Born without a Pancreas - A journey with a Insulin Dependent Neonate

Facing fear for charity (Whittlesea Leader, 08 Feb 2011, Page 7)

2011-02-08T11:49:00.001+11:00

Facing fear for charity

Whittlesea Leader
08 Feb 2011

MILL Park mother of four Karina Caton is no fan of heights. But when it comes to her children, especially her two-year-old daughter Sarah, who was born without a pancreas, she is willing to drop from the sky at an altitude of 3000m. On March 3, Mrs...read more...

Conquering Fears One At A Time

2010-12-01T16:40:00.000+11:00

I sit here today looking back over the last 2 years. I know some people believe that dates dont mean anything but to me they mean alot. For me the symbolise fears and acheivements.

As I sit here right now and think were we were 2 years ago. I was sitting with Johm Mills being told my baby was very very sick. She was 3 days old already and I hadnt even held her, she was being kept alive by a breathing machine and her life held on by a thread.

I was able to place Michael's wedding ring over her tiny hands, her very first bangle. Stop for a moment and take a look at your husbands wedding band and then imagine placing it over the wrist of your newborn baby.

I look back to this day and part of me wants to go back, because while yes we had a premature baby and a very sick premature baby, we had a premature baby with all her organs, she would grow and she would fight and we would soon bring her home and life would go on.

But part of me wouldnt go back. I love Sarah with all my heart and have accepted her for who she is, a very special little girl who has touched the hearts of many.

I feel blessed to be the Mum of this little girl who has had to learn to live in our world and I have had to learn to live in her world, and its been a challange.

We had an issue with her Insulin pump yesterday in where it completly malfuctioned, Id been checking her blood sugars all day and they were fine, until the afternoon where they shot up and then I checked her ketones and they were 6.7, which is an incredibly dangerous level. She had been awefully grumpy and no wonder why, but I had no idea her pump had malfuctioned.

I froze. Id never seen Ketones so high. So I called the hospital and I gave her an injection of insulin. I sit here waiting for a replacement pump which should arrive tomorrow, and in the meantime we are giving insulin by injection every 4 hours.

One of the worst things about Sarah is the unknown and nightime is incredibly hard. We do not know why Sarah has seizures but they often come at night.

This morning when Sarah woke she was acting very funny. I immediate thoughts went to low BGL and as I checked that it was HI, so it wasnt a hypo, but just as quick as the episode happened it was over and it registers that it was a seizure.

None of the other children with Pancreatic Agenesis suffer from seizures so we are unsure why Sarah does, and we are very much struggling with our decision to start her on Anti-Seizure medication. We know by starting it we are protecting her brain, but in exchange for that we are sacrificing her Liver.

Last weekend saw Sarah reach her 2nd Bday, it was a quiet day with lots of reflection on how far she has come and this weekend her friends from NICU are joining her for a little party which we are very much looking forward to!

Alot to get off my Chest

2010-11-22T22:44:00.000+11:00

Yet again Ive been slack in updating.

Its been a pretty rough month on the health point for Sarah the last month, its like I dont even really know where to start.

This post might be abit back and forth but I shall try.

Firstly we feel incredibly lucky to have Sarah with us and we go through periods where its like she is like any other child and sometimes its like she doesnt have any health issues. All the suns line up, everything aligns and she is very easy to manage. She absorbs everything, her blood sugars have great control, she has no lingering infections and she is the most happiest, cheerful little girl that is developing her own personality. And I smile and I laugh and we do normal things and its like she isnt sick at all. I relish these moments because I know its not going to last long.

Then its like someone flicks the light switch on and turns on a fan and proverbial shit sprays all over her and she is sick and she never does anything in halves, so 9 times out of 10 she is really really sick.

For almost 2 years this has been our life. Living in and out of hospitals, Drs, appointment, early intervention and more recently making phone call after phone call trying to get some help.

I understand that there is only so much funding for respite services and disability services, I truly get it and there is someone worse off out there. I try to do it on my own and mostly I have.

But pretty much for the last 2 years, Ive not slept more than 3 hours at a time. Im tired and run down and I have health issues of my own.

I have an alarm on my phone. Every 3 hours it goes off. It reads check BSL. Feed. Solids. Its reminding me every 3 hours Sarah requires some food of some description.

We have tried many avenues for respite. Always the same response. We can provide respite, however die to her complex care we cannot enter anything into her pump. Which means basically we cannot leave a respite carer alone with Sarah.

We looked into overnight care. But even still it does not give us sleep. The respite carer would be able to check her blood sugar, but would then have to wake me to give her insulin. If I have to be woken to give her insulin, I may aswell just wake up to do the blood sugar itself.

Our very last option was a service called Very Special Kids, they have a house in Malvern where you can get occassional respite, its staffed with trained nurses who provide very specialised and complex care. Sarah was accepted onto the program in July 2009 - yes a whole 14 months ago. At the time I recieved a letter saying that Sarah had been accepted but was on a waiting list. So last week, feeling utterly exhausted I contacted them to be told that they had consulted 2 Drs and the decision was made that Sarah couldnt be accepted onto the program for 2 reasons.

1. Her condition was not life threatening enough
2. Her condition is to complex for the service

So this just infuriated me. The very last respite option is not even an option now. What about Sarah?

I am one person and I cannot function like this forever. Why cant I say "She is too complex", WTF will happen if my health issues escalate and I physically cant care for her.

So moving on from my vernal vomit about the total lack of respite services *sigh*

This time last year Sarah had just undergone Open Heart Surgery, and Im pretty sure all of you bar maybe one reading this will know how this unfolded (and that is only because this person had a child on the cardiac ward that night)

Sarah came out of her surgery better than expected and it was decided to fast track her to the ward, she was taken off the ventilator and after 2 hours in recovery she was deemed stable and moved to the ward. I remember following her from recovery to the ward that night. We arrived on 7West late it had to be almost 10pm I think. There were lots of Drs/Nurses around and they suggested I go downstairs for some fresh air while they settled her in.

I was sitting down talking to Michael on the phone, its 10pm so you can hear every conversation, every person talking by. Right then over the intercom you hear

"MET 7West bed X"

You hear these all day and it takes a moment for me to register that the MET call was for Sarah.

MET is for Medical Emergency Team.

I race back to the lifts and they take forever. I make my way down the corridor to Sarah's room, petrified of what Im going to walk into. There I met a room full of Drs and a lovely Mum whom I am now good friends with.

Sarah had stopped breathing. They had managed to bring her back but they had no idea why she went from stable to not breathing.

From that point on she made an incredible recovery from the surgery and we were home in 4 days. I was relieved. It was 1 week to her 1st bday.

However 3 days before her bday she feel very ill. Id paged her Paed and he told me to bring her in. So as I stood there yet again in front of the Traige nurse, Sarah suddenly went limp, her eyes rolling into the back of her head.

Traige quickly grabbed her from my arms and she was raced to Resus, she was having a seizure and not breathing.

We were able to stop the seizure and stayed for observation and our lovely paed ensured that Sarah would be home for her eagerly awaited bday.

We made the decision at the time not to put her on Anti-Seizure meds, but rather threat the seizures as they occured as the seizure meds effect Liver function and as she is already in Liver Failure we didnt want to add the stress of the meds on her liver.

But today we admitted defeat. Sarah had 12 seizures over the weekend and we can no longer treat them as they happen.

So now we are faced with the decision. Start the meds and protect her brain, but its highly likely they will place her Liver into free fall, or dont start the meds but she could be suffering irreversable brain damage.

I just keep saying to myself - We can replace her Liver but not her brain but still I feel torn.

Im tired, exhausted and sick of trying to make the right decision, but somehow I will and Ill live to fight another day

An Update and Thankyou

2010-11-09T12:40:00.000+11:00

Its been a while since I added an entry here.

The last month has seen Sarah face some challenges with her health, but she battles on, her smile and laughter has returned and for that I am very grateful.

This week marks an Anniversary of sorts, its not quite her 2nd bday yet, but this time 2 years ago, things were not looking good and there were alot of people worried about this baby that I was carrying. She wasnt growing, I had a hindwater leak, fluid levels were dropping and I was in premature labour. I remember this week clearly. There I sat in a delivery room, being pumped full of drugs to stop the contractions. The Nursery was on standby. The Aneathesist had come to see me at 10pm to go over what would happen if this baby was born tonight. Her estimated weight was 525 grams.

We made it through that night, I spent another 3 days in hospital and come home on Bedrest. I was worried, really worried.

Then she arrived. At the time all I could see was a beautiful little girl, I didnt see the breathing tubes, the translucent white skin, the multiple lines, the machines keeping her alive. Even when they told me her stomach was severly distended I couldnt see that either. I just saw my baby, a baby born before her time.

I see it better now. She was tiny. She was born without a heartbeat. She wasnt breathing. She was so anaemic she required a blood transfusion within an hour of her birth. She was critically ill.

It feels like so long ago that we had "that" meeting. The meeting when we were told she had Pancreatic Agenesis. I remeber sitting there saying. "So she will be a diabetic" I had no idea the pancreas was such an important organ.

I also dont think I realised how fragile her health would be that first year at home. Sarah caught everything.

When her Dr's told me that a simple cough or cold would present a major danger to her, I thought "pfft" its just a cold. But my god how wrong was I. A simple cold would send her blood sugars haywire, she would be in respitory distress within hours and in the emergency department Resus bay. At one stage the Drs were tossing up putting her on CPAP in ICU.

We made it through 19 seperate admissions that first year. Each time I held my breath hoping her body wouldnt give up. Sarah is tough, I know she is tough, she defyed the odds through her early start, but in the back of my mind there is always that niggling thought, she can have all the fighting spirit in the world, but what if her organs have just had enough, what if this is that one infection she cant fight.

Recently the Type 1 community lost one of its own. Succumb to the very disease that people see as ok as long as you take your insulin.

Many people see Insulin as a cure. It keeps out children alive, but its only a bandaid. It covers the wound but does not heal it.

Insulin is a very dangerous drug, to little and your in acidosis, to much and you can be in a coma. Its a fine balance. Its also one 2 years later that we for the majority of the time have not found.

Its not our fault, its not the Drs fault, we are doing everything by the book, its just that Sarah cant read yet, so she isnt following the book! She is travelling her own path.

For Sarah though, she is following the path of those "born without a pancreas". Its noted alot in literature that there BGL's are brittle and hard to control. There growth is delayed, they have issues with Multiple organs.

What is a comfort these days though is that through the www I have been able to locate other families. I am in close contact with 3 other families and its good to share similarities and challanges, share ideas and watch these little miracles grow.

I'll finish with this quote

"having a baby is difficult, having a child with diabetes is more difficult, but having a baby with a rare type of diabetes that few understand is extremely difficult and isolating"

I'd like to thank everyone for the support they have showed us, for educating there own circle of friends on Sarah's condition, it means alot that you take time out of your day to think of Sarah and her daily challanges.

Im No Artificial Pancreas

2010-10-05T23:58:00.000+11:00

Its been one of those weeks, you know when you just cant wait for a new week to start because you feel like grabbing Diabetes around the neck and strangling it to death.

It's so hard to find a nice balance with Sarah and when we do find it, something changes and what has just taken us 6 weeks to find a good balance is no longer working. Its hard to explain the frustration that this brings.

I feel like the weight of the world is on my shoulder at times and one tiny mistake and weeks of hard work goes out the window, and that people are standing by waiting for me to make a mistake and you know what Im human and sometimes humans make mistakes.

Last week I got up and went through the morning routine. Change and dress Sarah. Go and make school lunches, while making breakfast for the older kids and getting them out the door to school on time. Sarah is happy to play for an hour while I get the older kids all sorted which is great.

9am comes and I get Sarah's breakfast. Making sure that I have her cereal weighed to the nearest gram, then out comes the calculator to calculate the carbs.

I bolus for 26 grams. Thats for cereal and the milk used in the cereal and an additionals 80mls of milk in her sippy cup. I take her BSL and its 8.6. Perfect I say.

10am comes around and Sarah has finished her morning Physio session and is getting tired. Its time for morning tea and her sleep.

Out comes the BSL meter. BSL is 26.8, her ketones 1.7. Sarah is incredibly grumpy by now and very out of sorts for her. I wash her fingers and test again, but she is even higher.

I check her pump history and sure enough no Bolus was delivered at breakfast. I was sure I did it. I give her morning tea and 1.5 units to correct the High blood sugar.

I sit there and feel the absolute pangs of guilt. Its my fault that Sarah is feeling so crappy, that her BSL is so high that she doesnt have enough insulin circulating in her blood so her body is developing ketones.

Two hours pass by and I go and check on Sarah.

She is still sound asleep. I check her Blood Sugar and it is LO, so low the meter cannot register a reading. I try and wake her up but she is floppy and having what are called a Diabetic Seizure. There is no fitting, there blood sugar is just so low they are unable to respond to anything.

So out comes an injection of glucagon. This injects sugar immediatly and she comes too and proceeds to vomit, but she is awake and responsive again.

The guilt overcomes you again, because as much as you want to be, you are just not as good as a pancreas is.

You push through the day and another day dawns, but the guilt is forever there.

A Message From Sarah

2010-09-02T23:22:00.000+10:00

Hi Everyone.

Mum and I are participating in the Walk to Cure Diabetes, an event that raises money to fund vital research into finding a cure for type 1 diabetes.

As you know, our family has been directly affected by this chronic illness and it is still a constant struggle. Type 1 diabetes is an autoimmune disease that is not caused by diet or lifestyle or through any fault of the sufferer. It can strike at any age but often occurs in childhood. Every day, five more Australians are diagnosed with the disease.

Type 1 diabetes affects every aspect of a person’s life and has a huge impact on families such as mine. A diagnosis of type 1 diabetes means constant finger prick tests and insulin injections, up to six times a day. This happens seven days a week, 365 days of the year. There are no sleep-ins, no holidays and no
time off. Just today Mum had to check my blood sugars 12 times! Children don’t grow out of type 1 diabetes and the threat of dangerous blood sugar highs and lows is
always present.

Perhaps the hardest aspect of the disease for us to deal with is the potential of long-term health complications. Even with the best care and management, people with type 1 diabetes often face complications such as blindness, heart disease, stroke and kidney damage.

That is why I am asking for your support. The Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes raises money to fund the best and most
promising Australian research to find a cure for type 1 diabetes and help
families like mine.

Please give as much as you can – all donations, regardless of amount will bring us closer to a cure. To visit my personal fundraising web page click on the link below. When you donate a receipt will be automatically generated.

Thanks for listening to me, back to bed now, Mum is just about to come and take my BSL again!

http://walk.jdrf.org.au/teamParticipant.asp?participantID=571

The Artificial Pancreas

2010-08-26T18:22:00.000+10:00

Im very excited.

I had a meeting with Sarah's Endocronologist. Her nice, friendly supportive endo, (not her origional Dr McMoron )

We planned this meeting a month ago after I was contacted by a Dr in the US claiming to have made a breakthrough in Pancreatic Agenesis research.

Firstly we discussed the events of last week and the condition in that Sarah was in. She agreed that it was unacceptable and can understand my feelings in why I feel they failed in there Duty of Care to Sarah and what we can do to ensure it wont happen again in the future.

We then moved on to this US research group. They have come across a new gene mutation called RFX6 Gene.

They found this gene mutation in 6 of 7 patients with Neonatal Diabetes. The patients all had a pancreas but the pancreas was either Annular or Hypoplastic which means that only a tiny portion was developed in fetal life.

All patients had Neonatal Diabetes but more interestingly they all had Malroation of the bowels, Severe IUGR at birth and Bilary Atreasia's.

Sarah was IUGR, Hypoglycemia within hours, had Malrotation of the bowel and had a micro colon which is a Bilary Atreasia.

The research this far and this part of the research is only at the mice stage, but that Islets Call Trasplants have transitioned the mice of insulin and this is a major breakthrough. It appears the RFX6 gene mutation causes all patients to be born without the Islets of Langerhams which are the insulin producing cells of the pancreas. Of course Sarah being completly Pancreatic Agenic means that she has no insulin producing cells, but this research indictes that an Islet cell transplant would be succesful.

We are quite a few years away from ICT therapy being approved for humans, but it is a major breakthrough for the few kids with this conidtion.

Something else that is quite exciting for us is the first stage of the Artificial Pancreas.

The first stage is now available in Australia. However upgrading Sarah's current Insulin pump to the new one is complicated. As hers is still under warranty under "Governemt Guidelines" we are unable to for another 2.5 years.

Well we found out in the last few days that there is a loophole in the system. If a newer technology becomes available that is better able to manage the condition then your health fund at there discretion may pay the benefit.

The new System is in 2 parts. 1 is the insulin pump itself. The second is an additional cannula that reads the blood sugar every 5 mins and uses blue tooth technology to send the reading to the insulin pump. the insulin pump then alerts the user ie me to rapid changes in blood glucose. So if Sarah's blood sugar was rapidly falling it would sound an alarm to alert us. If we were unable to take action ie we are asleep and the blood sugar falls below 2 it Automatically suspends insulin delivery for 2 hours.

So a few calls later and we find out the criteria for applying for "special consideration"

The claimant needs to have

* Used glucagon in the last 3 months
* Frequent Hypoglycemia
* Had an episode of Unresponsivness/Diabetic Coma
* Hypo Unawareness

Sarah meets all of these which is bad she does but good for this purpose

Now there is the pump side of it that health funds cover, but the optional CGMS system is not covered and comes at a cost of about $1500 with the cannulas priced at $75.00 each and they last for only 6 days. So the ongoing monthly cost is about $300.00

So we placed a call to our health fund who advised that if it was explained by the endo on how the integrated CGMS would benifit sarah and assist us to manage her condition that they could use "special consideration" to also pay for the CGMS.

So its really been good news. Our Endo is writing us a letter of support but things are looking positive for it to be approved

Admission # 25

2010-08-22T22:38:00.000+10:00

So we have just come home from Admission # 25. An experience I never wish to happen again

Below is an email I have sent to the hospital administration

I have had a few days to reflect on an incident involving the medical care of my daughter.

She has a long and complex medical history at the hospital coming to the Neonatal Unit when she was 36 hours old. She has a precarious condition and was diagnosed with Pancreatic Agenesis (She was born without a Pancreas)

Last Thursday (19/08/2010) I bought her to the emergency department with a suspected Bowel Obstruction. Her care in emergency was not the concern, however late in the day it was decided that in order to wash her bowel out she would require an IV. 6 attempts were made at accessing her with no success. Her Gastro Consultant then made the decision that she would need to go to theatre for a washout and for a Central Line to be put in.

As she has Pancreatic Agenesis she is Obviously flagged as a Type 1 Diabetic and this would be the 5th time she would be going to theatre. We were admitted to the 5th Floor Medical unit. Shortly after arriving, the theatre nurse came to collect her.

Her BSL was checked prior to leaving the ward and her BSL meter handed to staff. I walked down to pre-op hold where I again checked her BSL and it was 9.6. Her Insulin Pump had been reduced to 50% of its normal rate as she was ion a fasting state and has a history of her BSL’s dropping under a GA.

She was returned to the ward 2 hours later. The recovery nurse said that she had woken up and had been kicking her legs around and all obs stable. She then left the ward

I touched Sarah’s hand for no reaction. I asked the nurse what her BSL was. There was nothing recordered on her theatre Observation chart.

I immediately took her BSL to find it was 1.4. Her nurse was checking her conscience state and she was unresponsive to Touch, Voice and painful stimulus.

There were no fluids running so the nursing staff administered 35mls of Dextrose into her central line and Sarah started coming out of the hypo

It was confirmed that no Monitoring of her Blood Glucose Levels had occurred in the time that Sarah was in the care of the Theatre Team.

As a parent of a child with a very complex and precarious medical condition, we place 100% faith in the medical staff. I can be in control of a lot, but in theatre I place my full trust in the medical staff

To witness what I witnessed was horrific, there is no other way to explain it. To watch your child completely lifeless with the only good thing being is she is still breathing is something that should never have occurred.

Sarah has had this condition since birth. Low bloods sugars are apart of daily life for us. In the 18 months since she first came home she has never fallen into an unresponsive state.

I guess I cannot understand why her blood sugar was not checked at any point while she was in there care. She is on an insulin pump which makes it fairly obvious that she is a Diabetic and I had a conversation with at least 3 theatre staff about the importance of monitoring her.

Being that Sarah has no Peripheral IV access left, we are left with the prospect of having to go to theatre for a central line should she become ill again. We have been very lucky this year and have been able to isolate her and she has avoided the nasty winter bugs, but it appears that she has picked up a bug on the ward this admission, so its likely that we may be facing the prospect within the week of having to bring her back in, if the infection gets into her chest as it has in the past, the only thing that has healed her has been IV Anti’s which puts us in the position of again placing her in the care of theatre staff and praying that they don’t repeat this mistake.

The consequences for Sarah could be devastating and its myself and my husband that are left to repair the damage. I do not like to or want to come across as a difficult parent, but Sarah cannot yet advocate for herself so it’s my job to do it, but I feel very strongly about this incident

Sarah sees multiple teams at the RCH (Neonatology, General Medicine, Endocrine,Gastro,Cardiac) and I have been so frightened by this that I am literally petrified of her needing admission to RCH again. I believe an incident report has been submitted and I am writing to inform you of my feelings as I would hate for this to be swept under the carpet and for it to occur again to either Sarah or another patient with devastating consequences.

Welcome to NICU

2010-08-16T21:40:00.000+10:00

I was reminded today that we are approaching our 2 year Diabetes "Anniversary" and its allowed me to do some reflections.

As I walked around cleaning the house today, the music on, Sarah plodding around the house getting into everything as I was putting it away. I stopped and just stared. My mind going back to those early day, the tears, the excitment, the nerves, the anticipation, the uncertain times, the sadness and the happy days.

In alot of ways when Sarah was born I was so overwhelmed by what was happening. I didnt even have time to absorb that fact that my Ob had just walked in the room and said "I need to get this baby out she is very sick", and that was it, people rushing everywhere.

Then I wake and am told I have a daughter, a very small daughter but she is alive and in NICU. I dont remember seeing her that night, I was wheeled through NICU on the way to the ward, but I was so drugged out all I could see was bubble wrap.

I do remember a few hours later when I was slightly more awake talking to a Dr from NICU. She explained that Sarah was doing as well as could be expected and she was on CPAP but coping extremely well given her tiny size. I also remember calling quite a few times overnight to check on her. I had quite a few friends and family that were calling me that night, probably trying to keep me pre-occupied and my mind off things and I will forever be grateful to those people.

The next day was Saturday. Michael bought the kids in. In the morning I begged the midwife to stop the Morphine drip and remove the Cathetor, I didnt care how much pain I was in I desperatly wanted to see my baby. What if things were worse than I was being told? I had to see her for myself. I didnt want anymore polariods, I wanted my baby. I HAD to lay my own eyes on her.

I did go and see her on the Saturday. I remember sitting there next to her, to scared to touch her but just staring. I had no idea how something so small could survive what she had, but what was breaking my heart was how was she going to keep fighting, she was so tiny. The photos really didnt do justice but I am not kidding when I say her fingers and toes where no bigger than grains of rice. Her skin was almost transparant. Her eyes still fused closed.

That day she was taken off CPAP and onto Low-Flow Nasal Prong oxygen, what I was to later learn is this is a massive step for a child her size and in her condition and there she was showing them all.

Again the Drs spoke to me. It was Dan Cazalaz, such a sweet caring Dr. They had concerns about her gut. Her abdo has become distended which is not uncommon on premature babies but its generally caused from feeding, so the treatment is to drop the volume of feeds down, only problem here was that they hadnt yet fed her. So they spoke about Anti-biotics and this was the first I heard mention of her having high blood sugars and requiring an insulin infusion.

The nexy day Sunday is where we see it all go wrong. Her abdo continued to swell and she went into respitory distress and they needed to ventilate her. I think that memory will stay with me forever. I had a friend come visit me in the hospital and I walked in on the Drs in the process of ventilating her. Drs everywhere, they were doing more xrays and this was the first time I cried since she was born. Only a few hours later Sarah would be on the way to the RCH for what was going to be a long road to home.

Arriving at the Childrens hospital was a surreal experience. Michael had gone with Sarah and the NETS team to the Childrens and I was left back at the Mercy really with no idea how Sarah was. She was assessed by the Neonatiologist John Mills upon arrival and he briefly spoke with Michael. Things didnt look to good and they would do everything they could. I discharged myself from the Mercy and arrived at the childrens at about 2 in the morning where I would stay for the next 7 days.

I met Dr Mills the following morning. We sat down with John and another Dr who would be her general surgeon. They told us that Sarah looked to have a condition called NEC which is a condition in which the wall of the bowel becomes infected and "dies" the treatment is surgery to remove the dead colon, it has a high mortality rate and not every baby with NEC survives.

I remember walking into the hospital that night thinking "hey once they fix her bowel, she just needs to grow and will be home before we know it", Id do anything to go back to that now.

Day 9 became the day she was operated on, it was the longest 5 hours of my life. To know that they are operating not only on your 9 day old baby, but a baby that should still be growing inside you and is so tiny you cant even understand how they are going to manage to find her "colon" is one of the most terrifying experiences. "Was she strong enough", would she make it through?

Sarah was actually operated on at the bedside in NICU, and I think thats when I relised for the first time that we had a very sick baby, to know that she was so unstable that she couldnt be moved to theatre for the operation and that theatre would be coming to her.

I had met 2 very lovely mums in NICU, 2 mums that to this day we are pretty much in daily contact. We all had a very long road home and all our children whilst all have different complication we very much travel this continued road together. We cry together, we laugh together and we even scream together. All 3 of our children have had multiple surgeries and to know that when we are travelling a hard road, either one of us can pick up the phone and know that they understand and they get it is comforting.

There were several times in the first few uncertain weeks were I am positive the Drs didnt know if she would be there tomorrow, the problem was they simply didnt know what was wrong with her and that was a massive hurdle. When that surgery was in progress I remember seeing the Neonatiologist being called into her room and looking back it was obvious why now. The problem with treating Sarah was they couldnt believe that they were seeing let alone determine how they were going to save her.

It was late December when I met with Dr Mills again and he explained that there early suspicion was that Sarah had Cystic Fibrosis but during the surgery they were unable to locate her Pancreas and Gallbladder. He continued on by saying "Ive been a Dr for over 30 years and not only have I never met a child born without a Pancreas Ive never ever heard of it happening. After her surgery he contacted his father in the UK who is also a retired Paediatrician who had never come accross it either. He thought the most probable diagnosis was going to be Neonatal Diabetes and he explained how hard it is to stabilise diabetes in babies, let alone babies that were born at half there expected size and 9 weeks early.

So we went into Christmas with the faith that she did have a Pancreas, it was just that it was underdeveloped. Over Christmas however Sarah started going downhill at a rapid rate and she had also developed Nec for real this time. Thankfully they were able to treat it medically and she didnt require the removal of more of her Colon.

We met with John again in the early January and this is when we got her offical Diagnosis of "Pancreatic Agenesis" . He explained that along with No Pancreas and No Gall Bladder she also had a heart defect and a Abnormality of her Bile Ducts and her tests were showing that her Liver was failing. God Bless this man because he was so upfront with us. He told us that day that he didnt think she would survive and it would be a miracle if she ever came home.

The next few months really were at a standstill for me. I was grieving alot, grieving for what should have been, what was to come, what wasnt to come, but I had to remain strong for Sarah. I was really optimistic even when her Drs wernt. I felt if I lost that optimism then I would crumble.

I think too I was grieving for others. The thing with the RCH NICU is it is so very different to the other lvl 4 NICU's. It became apparent very early that there was only 3 reasons your baby was tranferred here.

1. Your child needed Surgery

2. They didnt know what was wrong and things wernt looking good

3. Palliative Care

In Sarah's 14 weeks there we met and said goodbye to 12 little angels. One that deeply touched my heart was little Cleo, she was born the day before Sarah at full term and Sadly she passed away 4 weeks after we achieved our Miracle by bringing Sarah home. Cleo would never leave the 4 walls of NNU, she would never have sunshine on her face and that broke my heart as only weeks earlier Cleo was getting ready to be discharged home.

So I sat there today watching Sarah pulls toys out right after I packed them away, I picked her up and I just sat there looking into her eyes, and giving her a massive cuddle.

I havnt slept more than 5 hours in one stretch since she was born. Some night we dont sleep at all. Her diabetes is very hard to manage, as hard as we and her medical team try. We do what we can for her.

But by all accounts for me to be sitting here reflecting on this, talking about how Sarah was into lots of Mischief today is an absolute Miracle in itself. At the start of this journey I didnt know how she was going to be able to breath on her own, I think I can honestly say I dont think that paed John Mills did either, and without him I dont think I would have been writing this. He searched high and low, he worked around the clock, when he got over the shock of what they had discovered he knew he was racing the clock to save this baby and he not only saved her, she in her own way is thriving.

Everynight I say a prayer for all of Sarah's little friends and there parents and I send some angel dust up to her friends who wernt able to stay but know that they are now at peace and will likely live in Sarah's heart forever.

I recently put this slideshow of Sarah together, if you have time pop over and have a look.

http://www.onetruemedia.com/shared?p=b797a26d0fd238564a921d&skin_id=1901&utm_source=otm&utm_medium=text_url

Sarah's 18 Month Growth and Development Assessment

2010-08-11T15:48:00.000+10:00

Ive just received Sarah Growth and Assessment report in the mail and Im pleased as punch! It reads as Follows.

I reveiwed Sarah in my medical outpatient clinic today with her Mother Karina. Sarah is now aged 18 months and has had a relatively good period in recent times. She has had a couple of months without incident, but over the last month there have been a few annoying problems such as an episode of of gastroentroenteritis, followed by an episode of tonsilittis that seemed to roll on to some upper respitory infection with cervical lymphadenitis. This all settled down then came an episode of Apnea with associated peri oral mottling while she was asleep. She had episodes like this about 12 months which I believe were very similiar and probably the same mechanism.

Sarah has had some seizures in the past and has had a videa EEG which was normal. Karina does have Buccal Midazolam at home to be administered should she have a prolonged seizure lasting more than 5 minitues.

Developmentally Sarah is doing Brilliantly. Her communication system is evolving well, with 5-10 single words, a lot of babble and good verbal responsiveness to verbal commands emerging. She commando crawls for effectively now, and sits stably. She pulls to stand and is beginning to cruise the furniture. She eats everything and is sleeping quite well.

The Endocronologists of course, are monitoring her diabetes and her recent HbA1c in July was 9.6, and I understand that her basal rate has been increased to try and bring this down a little. She is having some hypo's but these havnt been terribly troublesome.

Sarah is about to commence childcare two days a week which I think will be excellent for her Social development. Karina is trying to access an aide and I have sent a letter of support.

Sarah looks excellent today. She was happy and interacting delightfully, and played at a developmentally appropriate level on the floor. Her weight was 7.5kgs which is an increase of 220 grams over the past week.

Sarah has developed acholic stools (known to have schleriosing cholangitis). She is anicteric and remains well. I have asked for urgent review by gastroenterologists.

t is wonderful to see how well Sarah is doing. I am on sabatical for a few months and I look forward to seeing her again when I return.

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The Dilemma of a Visit to the Emergency Room

2010-08-10T19:45:00.000+10:00

One of the hardest things of having a child with a Rare condition is what happens in an Emergency. In an emergency you dont have time to call your "medical" team and you face the prospect of arriving at the emergency department with your child needing urgent medical care and explaining that your child has a rare condition.

You quite often met with black stares and even with eyes rolling and you wish for just one moment that it was a dream. But its no dream and you are quickly snapped back out of it. You stick to basics to get the immediate problem sorted.

Take a moment and think back to times when you have had to take your child to an ER room, a GP, a dentist. Your Given forms to complete, there is always a section on previous medical condition. Diabetes is always listed there but we always have to tick "other" and list Neonatal Diabetes/Pancreatic Agenesis.

I always try and give a very brief explanation. I say "Sarah has Pancreatic Agenesis, so she has Neonatal Diabetes and complete Pancreatic Insufficiency, she is on an Insulin pump and Creon supplements" Then the Drs, Nurses, students come flying in with questions.

Its a very frustrating position to be put in, you know your childs condition inside back to front, but your in a critical situation most of the time and your in the ER because you can no longer deal with things at home. But yet you stand there in front of Drs and Nurses that not only have never met your child before but they have never heard of her condition. Yet you stand there knowing your childs life is in there hands. You are inredibly powerless in a way.

The point I am trying to make here I guess is about education. Every emergency visit for us is met with stares, we get glances from every direction. We get concerning glances from Drs, from nurses, from cleaners and yes even from other parents in the waiting room.

My child may look no more ill from yours, or she may be screaming at the top of her lungs and no I cant "Shut her up". We may bypass traige and be put to the front of the queue and taken through immediatly but that is because our childs condition can become critical in seconds. Its also because a simple cough or cold can be life threatening for Sarah.

You may be a person that works within the healthcare industry, ot studying in the field. I know sometimes we can come accross as being "difficult" parents, we dont get up each morning with the aim of making your day harder but as the parent of a child with a rare condition it is our job to make sure that our child's needs are met. We dont expect you to have a full understanding of there condition because lets face it, you are unlikely to come accross it again, but work with us. We live with it 24 hours a day 7 days a week. Talk to us, explain things to us. I am always happen to educate people on Sarah's condition, but understand when you show fear in your eyes, when you hesitate, when you become nervous you are making me even more nervous.

As a parent I will never growl under my breath whenever I see a child come to emergency not looking an worse than my own child who has been waiting for hours to be seen already go immediatly through for assessment.

Often the real dangers are hidden under the surface

Unchartered Territory

2010-08-01T20:27:00.000+10:00

Firstly I apologise to my blog followers for not updating in so long. As you can imagine from our Journey so far, life is shall I say interesting for us. There is barely a dull moment in this household!
I really havnt blogged much about my other children as I guess the purpose of this blog is to put down my rare feelings and emotions on life with Sarah, firstly it was a pregnancy journal and then well it turned into a place were I could blurt out my fears and then our journey in getting her home.
Our Eldest Child Kevin also has a Medical condition, a heart condition to be specific. It was never detected at birth and in fact wasnt diagnosed until he was 7. It was a very frustrating time. He had just been Diagnosed with ASD (Autism Spectrum Disorder) and his paed noticed he had a heart murmour, off we went for tests to learn that He had a Hole in his heard and the plumbing of his heart wasnt quite right. So he had a Atrial Septum Defect and PAPVD.
We then got a rude awakening to the health system in Australia and the Red Tape, I was tearing my hair out. There were waiting lists everywhere, infact the waiting list for a MRI was 5 months! It was ludicrious and I was furious.
It took us over 12 months to navigate the red tape and waiting lists and after 5 cancelled surgeries we finally had a date. Tuesday the 16th December 2008 he would have his surgery. It was going to fit in great, we could get him over his surgery by the time our baby arrived at the end of January.
Well as you know that didnt quite work out so well and with Sarah in NICU, we made the decision to cancel Kevins Surgery, somehow the idea of Sarah in NICU and Kevin in PICU wasnt so appealing.
So Kevin Finally underwent his surgery in Feb this year. It was a very stressful day, his surgery was expected to last 6-7 hours but instead it went into the early hours of the next day and it had taken them 12 hours. He however was a champion through the initial recovery and was discharged home after 5 days!
I tell you though watching 2 of your children undergo Open Heart Surgery within 3 months of each other was quite draining, as a parent its one of the hardest things you do. You hand your child over to a surgeon and until they surgeons emerge from theatre you have no idea what is going on. When Kevins surgery went so far over the expected time I become more and more anxious by the hour. I was relieved once I was able to get into PICU and see him. Although its so different seeing your baby on a Ventilator compared to seeing your 10 year old on a Ventilator.
It was also a time of stress because as you know Sarah's medical condition continues to be precarious and she can go downhill rapidly requiring admission to hospital. I had no idea how I would cope with both in hospital on Different wards and still 2 more at home to care for, thankfully it didnt happen and Sarah was farily stable at that time.
So onto Sarah. Im so happy to advise that we actually havnt had an admission for about 4 months now, we actually had a great run of 13 weeks where we didnt even have to take her to the emergency department!
Someone asked me recently is she more stable? I dont think she is, I think its more that we now know how to treat very complicated situations.We have dealt with almost every Diabetic complication there is, and its easier to treat her at home than in hospital.
In April Sarah Featured on the Good Friday Appeal as a follow-up story to the 2009 story. You can have a look at the link here Good Friday Appeal 2010 May and June were pretty uneventful and we just juggled the day to day complications at home, some days hairer than the day before, but we somehow managed and I can tell you it was such a relief to have some time alone, without the hospital admissions and the hospital appointments and this and that and this and that, I felt for probably the first time that I was able to be just a mother and not a Mother, Nurse, Carer.
July has been a very challnaging month. This month we have seen gastro, tonsillitis a viral ear/throat infection and Bronchiolitis, including our first experience with inserting an NG tube!
We seemed to be able to limp her through all that without an admission and I was very impressed with myself.
Then last Thursday Sarah had her Checkup with her Paed at the hospital. Now firstly her Paed is second to none. He isnt only her Dr either, he advocated for Sarah around the clock. He is very aware of our family unit and my desire to keep her home whenever possible.
So at the checkup he was very impressed, the last appointment was wasnt really sitting unassisted and this time she isnt just sitting on her own, she is now even crawling!!!!!!!!!!!!!
I'd discussed my concern with him about her Color, her skin has become very pale over the last 6 weeks and I was concerned that maybe her haemaglobin was dropping to low levels again.
He agreed that she did look pale but given her last FBC her levels were good at 126, he didnt want to have to draw blood if he didnt have to, so we decided to wait it out and see if her color got better over the next few weeks.
So as I was leaving, very happy that we got such a good report I asked one of those "by the way" questions.
I had noticed over the last week that her Stools have been very pale. Think the color of a Manila folder or the color of cream and yep thats the color Im talking about. Id only asked him as I had wanted to send off a sample to check her for Malabsorbtion.
Well he said can you go and change her and bring me a sample, but I hope its not as white as you are saying it is, if it is this could be serious.
So I bring the sample back, he takes one look and picks up the phone to page our Gastro Consultant.
So he explains to me that even by looking at the sample he can tell me its not malabsorbtion but what it is, is a problem with her Liver. There is no Bile in it and if there is no bile in it, the bile it pooling in her liver causing irreversable damage.
Many of you would remember that in Decmeber Sarah had an MRI which picked up a problem with her Liver. The condition is Primary Schloising Cholangitis. Its basically a condition where the bile ducts are malformed and the restrict the flow of bile. There is no cure for the condition, the only option is Liver Transplantation. However is mostly strikes people in their 30's-50's so there is very little data of Paediatric patients.
We were sent for Bloods on Friday which confirmed there appears to be some type of blockage in her bile ducts and the most likely explanation is that they have collapsed.
She is booked in for a Lover Ultrasound and Biopsy tomorrow morning, once that is done we will have a far clearer picture of whats going on, but her stools still remain white and she has now started itching all over, not a good sign. The most likely solution will be surgery this week to place stents in her Bile Ducts and start the process of Liver Transplantation.
And I guess that is what brings us into unchartered Territory, all the way through this journey Ive been able to have alook into a Crystal ball in a way. There is a little boy accross the tasmin that has the same condition and he is 6 months older than Sarah. But Finlay doesnt have ther Liver Condition and of the surviving children Sarah is the only one to survive with Liver problems, so we are on our own on this one.
So please say a prayer tonight for our little girl. I dont expect good news tomorrow, just have that feeling. But what I do know is we will fight this head on whatever the future holds for us.
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Our Recent Hospital experience and feeling disappointed

2010-02-22T16:03:00.000+11:00

I dont often blog about in the inside working of the hospital, as on the whole they have been terrific and without the Drs involved in Sarah's care she wouldnt be here today, so I always feel in two minds about our experience there.

But last weekend we experience a systematic failure, one that may have drastic conseqences for Sarah.

Last week Sarah had immunisations. I dont think Ive gone into detail about her needles before, but Sarah seems to have adverse reactions to most immunisations. But the consequences of her contracting the disease themself outweigh the reaction she seems to get.

So due to the reactions she has been on a catchup schedule. Last week she had 3 of the normal shots, plus her second dose of the swine flu vaccination.

She has also been battling a chest infection/Bronchiolitis but she wasnt too bad, so the decision was made to go ahead with the immunisations. That occured last week.

On Friday she seemed better from a chest point of view and we sighed relief that we had escaped a hospital admission.

A few weeks ago we got accepted onto a program called ACE. Its accelerated care through emergency. Basically if your child needs to come into the ED you call a mobile number and talk to one of the nurses, they inform emergency and when you arrive your child has already been traiged and there is a cubicle waiting for you. Your childs medical history is waiting, the medical team is informed and you are only seen by a Snr Dr who has a brief of your childs medical history and presenting problem.

So what infact happened on Saturday was.

I phoned ACE to say I was on my way in with Sarah. I thought that she may still be battling the end of the infection and needed a chest xray. When I phoned I was told that Sarah had been taken off the ACE program after discussions with the Diabetes Team, the Diabetes team had said they could provide the same service as the ACE program.

So I arrived in Emerg.. Sarah had not already been traiged, they didnt know of her impending arrival not her presenting symptoms.

I explain that she is very lethergic and had been asleep since 7pm the night before, it was now 1pm Saturday afternoon. The traige nurse came and picked her up. She briefly opened her eyes, eyes rolled to the back of her head and she closed them again. She was also hypersensitive and was only waking to painful stimulas.

We were told to go to the clerk and then have a seat and wait to be called.

We sat in the waiting room for 1 hour.

We got called through to the cubicle. We were being seen by a Jnr Registrar. We waste the next hour going through her medical history when she says something that sent my mind spinning

"Why do you check her blood sugars"

I hold my composure, thinking surely someone has informed our Medical Team we are in emergency

Dr says Im going to take some bloods and do a chest xray. Sarah is lethargic as Im sure she has a bacterial chest infection. Will check xray and give you some oral Anti's to go home with.

Its now 4pm and Sarah is still asleep, waking only to painful stimuli, hypersensitive and when you pick her up her limbs are rigid. The same as she had been since arriving at the traige desk.

At 5pm the Dr comes back, The nurse expresses concern that this is not a chest infection and the Dr says Ill just check something with the consultant.

The consultant comes and and has Sarah moved to Resus.

He quickly puts an IV in, while explaining that she is in a constant seizure state and administering Midazalam to interupt the seizure.

Now I sit here, my mind still reeling at this systematic failure.

1. Had we not been taken off the program, Sarah would have already been traiged, her medical team informed of our impending arrival, we would have been a Snr Dr immediately who highly likely would have picked up she was having a absent seizure straight away and treated her accordingly.

2. The Diabetes team are just that. They deal with Diabetes. Sarah clearly want going into emergency because of her Diabetes.

3. They didnt even bother to even inform emergency we were coming in. We sat in a waiting room for an hour, I then wasted another hour going through Sarah's history and answering questions like "why do we check her blood sugar"

So its now 2 days later and we are home, but Im utterly disappointed in how the health system totally failed my child. How one Dr who is no longer on her medical team managed to have her taken off a program critical to her care.

My mind is still reeling at how we managed to sit in the emergency department of one of the worlds leading childrens hospital for 6 hours before someone went to get more experienced help.

And the sad thing is, everyone would have gone home that day without another thought.

Sarah and our family dont have that luxury.

Inspiring Mums

2010-02-15T23:57:00.000+11:00

I have alot to update on, but its late so I shall come back and blog tomorrow But I just wanted to Share this message. Another D mum that I met through Essential Baby Website sent me this message tonight. She has entered a competition about Inspiring Mums.

My inspiring mum is a friend named Karina Caton. Karina gave birth to her 4th child Sarah on the 28.11.2008. Sarah was born 9 weeks early and weighing only 735g. We met through an online support forum for parents with diabetic children, but Little Sarah was different to the rest. She was actually born with no pancreas, among other health issues including needing both bowel and heart surgery.

Sarah is a fighter, in hospital numerous times and I dont belive she would be here if it wasnt for her wonderful mum (and of course dad) Sarah was given a very slim chance of living when she was born.

Karina is a fabulous support for all other mums of diabetic children, often giving us advice when it comes to issues we may face. But all along, she knows life with Sarah may be short. Sarah is the only child in Australia to be born with no pancreas.... See more

Just before Christmas the family were dealt a blow when their house was burgled whilst at the hospital with their eldest son, who was having tests for his own heart surgery. Karina went on National Television pleading for the return of her most precious item - pictures of Sarah from when she was born, the only thing that could not be replaced.

Plus then in late January, they dealt another blow finding out that little Sarah would need a liver transplant within 6mo to 5 years - depending on how quick the disease progresses.

I thought my life was hard being a single mum to a 4yo type 1 diabetic, but when I reflect on my own life and Karina's, I realise I am not so bad. Not saying that Karina's life is bad, but as the parent of another diabetic child, I wouldnt wish this on anyone, let alone all the other health complications little Sarah has.

I have never met Karina as we live in totally different states, but I really do believe she is such an inspiration to mums out there. We have formed a close bond and I am glad to have met Karina, although I wish it was in better circumstances.

I have met alot of inspiring mums in the last 12+ months, so many have given me strenth, inspiration, courage, support and kindness. The friends have I have met especially through the essential baby website and also through a Diabetic Mummies Morning Tea group that I am part of are truly inspirational. They give me so much support, I have no idea where Id be today without each and everyone of them.

So do you have a inspirational Mum story to share, if so Id love to her them. If its ok with you I will post them here on this blog.

A Long Week

2010-01-21T14:38:00.000+11:00

What a long week its been, am incredibly happy that its almost at an end.

We had the meeting with our Gastro on Monday to discuss the results of Sarah's MRI. She has a condition called Scleroising Cholangitis, I had already read her MRI report and spoken to her General Paediatrician and we were hoping that she had Primary Scleroising Cholangitis but she however has Secondary Scleroising Cholangitis

Secondary sclerosing cholangitis (SSC) is a chronic cholestatic biliary disease, characterized by inflammation, obliterative fibrosis of the bile ducts, stricture formation and progressive destruction of the biliary tree that leads to biliary cirrhosis. SSC is thought to develop as a consequence of known injuries or secondary to pathological processes of the biliary tree. The most frequently described causes of SSC are longstanding biliary obstruction, surgical trauma to the bile duct and ischemic injury to the biliary tree in liver allografts. SSC may also follow intra-arterial chemotherapy. Sclerosing cholangitis in critically ill patients is a largely unrecognized new form of SSC, and is associated with rapid progression to liver cirrhosis.

Aside from transplantation, there are no effective treatment options for SC; the median survival of patients with SC who do not undergo liver transplantation is only about 13 months.

We talked about a new medication we can try to slow down the progression of the condition and I asked the dreaded question of how long would her liver hold out before a transplant would be needed. He couldnt give us a answer but we will repeat the MRI in 6 months to see how quickly or slowly it is progressing, but he said it could be 6 months or it could take 5 years, so for now we place our heads back in the sand and he will let me know when to pull it out again.

We headed away last weekend back to my home town for the BILS 30th Bday, it was a great night (we were all in Fancy Dress!), however on Sunday Sarah spiked a raging fever and was starting to become irritable. I put it down to teething, we went to visit a few friends and headed some Sunday afternoon.

Monday morning she still had the fever, so gave her some panadol just to help bring the fever down, she was very happy in herself just had this fever that started out of nowhere, by about 10am she started getting a wheeze and at about Lunchtime she started grunting with each breath in and out. I called her Paeds know already knowing Id be making a trip through the ED. I said I had the appt with Gastro but then Id bring her to Emergency.

I could tell her Gastro Specialist was getting nervous with the grunting so we wrapped up the appointment and he came down to emergency with us.

Straight from Triage into resus, where she had the Drs abit stumped, she had a fever of over 40, grunting, resp distress but her oxygen sats were 99%, they put a IV in, got bloods and ordered a xray. Her paed team had now arrived and were sure that Sarah had Pneumonia, they wrote her up for IV anti's and said they would see us on the ward.

Well the Chest Xray come back and there was no change from her December Xray, so back to the drawing board, where was this fever and resp distress coming from?

They then though that maybe she had an ascending cholangitis infection which is a infection inside the bile ducts, but then her bloods came back and infection markers wernt indicative of that either.

So it left one thing to check and that was her urine, the hospital always do a SPA as its a sterile collection in babies, so it involves sticking a needle through the abdo and into the bladder and drawing out a sample of urine, she has had them in the past and hasnt had any issues, well this time they missed so they decided to use a cathetor.

One of the worst experiences to date, the Dr tried unsucessfully 3 times to insert the cathetor all the time Sarah was just screaming, the resus nurse had a try and thankfully she was able to get it in.

The sample looked clean, so they were again scratching there heads, her bloods were back and her White cell count was down, so they were thinking it was a viral illness, so the plan was admit for 24 hours and if fever went up again, start Anti's just incase.

By tuesday morning the grunting was gone, her blood pressure had returned to normal as it was 138/77 which is high for an adult let alone a child and her heartrate had also come back to normal range. So her Dr said we will just observe overnight again and if all is good will go home tomorrow.

So to my surprise on Wednesday they got the culture back on her urine and it had returned 2 bugs so Anti's it was to be, she was given one dose IV then switched to Oral Anti's.

Her Paed then came in to see me, we had a outpatients appt for today, but since we were in he came to our room to do it to save me coming back in tomorrow.

He started off with the chest xray. Remember how the xray had no change? Then it dawned on me. Her last xray was when she collapsed her lung after the MRI. Then he handed me the xray report

"Persistant Perobronchial thickening are present. Atelectasis bilaterally with further change at the upper right and left mid zones appears unchanged from Previousily. Appeareances are inline with Chronic Lung Disease"

So we are home.

We now add Liver Disease and Chronic Lung Disease to the list.

We are feeling very mixed emotions. The CLD is more than likely caused by the recurrent bronchiolitis, which she continued to pick up in the hospital. She will grow out of it and her lungs will get stronger again, but in the meantime she is more suspectable to respitory infections, which then triggers off her diabetes, which triggers off her Malabsorbtion and the vicous cycle continues.

I want to cry, scream, vent, and hide away.

But I dont, instead I smile and laugh because if I didnt, I would do the sentence above.

A Nervous Wait Yet Again

2010-01-12T13:49:00.000+11:00

Its times like these that I am forever thankful for this blog, its a place I can come to put all my irrational fears down, a place just for me where I dont have to hide my feelings and my fears.

In early december Sarah underwent an MRI on her brain and abdo, primarily it was to have a look at her brain. As she was born so tiny she suffered an Brain bleed which is very common in micopremmies, scans at the time showed the bleed but only time would tell if it had caused any damage. Then after her cardiac surgery she started having absent seizures so they wanted to do a MRI to rule out any brain damage and CP. The good new was that there is no damage at all, a massive sigh of relief.

Since she waws undergoing the MRI under a general they decided they would also scan her abdo to check and see if she had any remaining pancreatic tissue and to detail her Anatomy.

There has been some long standing concern about her Bilary System. Of the documented cases of Pancreatic Agenesis 50% has malformations of there Bilary System and 30% had heart abnormalities. Being that Sarah didnt have any heart abnormalities ( the heart condition she had was related to prematurity - PDA ducts are very common among premmature babies), there was a high probablility that she was going to have some issue with her Bile Ducts.

I remember clearly my very first meeting with Sarah's Genetics Dr. Sarah was in NICU and a few weeks old, it was not long after John had told us that she had this rare condition and it was unlikely that she would survive as her Liver appeared to be failing rather quickly. The genecist came with these case studies and said it looked like Sarah had a problem with her bile ducts, especially given her early gut problems.

One way we would know for sure was for Sarah to have a HIDA scan and then came the bad news "She is just to unstable and small right now for it" She needed to be able to cope with a GA and she needed to be about 2 kgs.

You might all remember my countdown to 2kgs and the excitment that bought when she reached it. The 2 kg club was to be a massive milestone for Sarah. Firstly that was the magic mark in which she could have the surgery to reconnect her bowel and reverse her illeostomy and it also meant she could have the HIDA scan.

Well the surgery was booked and when she finally passed a bowel motion is was elation! Then the worse fear happened and she became septic and ill once again, she pulled through and the race was on to finally get her home. We decided together (John, myself, care manager) that since she was passing bowel motions and her LFT's were coming down we would postpone the HIDA scan.

So when the MRI results came in I had her General Medical Team come to give me the great new that her Brain results are absolutely fine.

Her endocronologist was on holidays and returned last week and she emailed us with the results.

In a nutshell, her MRI brain was normal which is great; her MRI abdomen showed no pancreas or gallbladder. We essentially knew about the absent pancreas from her ultrasound and surgical findings as a neonate, but I think it was worthwhile documenting that there was absolutely no visible pancreatic tissue given her recent swings in BGL. The absent gallbladder is not surprising as it originates from the same developmental tissue as the pancreas in the fetus. She also has some abnormalities of her bile ducts in her liver.

Her geneticist then called to say that she too had looked at her MRI and noted the Abnormalities of the Bile Ducts and explained it was called "primary sclerosing cholangitis" or PSC. It has been encouraging to know that her Enzyme counts are still just above normal and she hasnt got any real noticable Jaundice at this stage. The MRI shows that she already has beading of the Bile Ducts and the geneticist was going on a search to see if any of the other PA children had survived the Neonatal Period with PSC. She explained that there is no treatment and no cure, but a bandaid solution is a Liver Transplant, but Sarah wouldnt need one for probably another 2 years.

I have tried to be fairly optimistic and the past week Ive had numerous phone calls from RCH about these MRI results. Have you been told of the results? Have you been in contact with Gastro? Do you have any questions? Has Sarah been itching? Is Sarah well at the moment?

Well by Sunday night it was doing my head in. Why all the phone calls and email? What is the urgency? Surely if there was a serious problem her Gastro Specialist would have called, since this is his area of speciality?

So I emailed him.

My only other concern is her recent MRI results. Ive had emails and phone calls from her endocrinologist and her genetics Dr in the past week to discuss the results, but I figure that you are the expert in this area, so you would be the one to discuss the results with. We have an appt with you early March, can we discuss the results then?

From speaking with genetics I understand that it was going to be highly probable that there was going to be a issue with her bile ducts being that it comes with the syndrome, but the abnormility that was picked up on the MRI is it likely that it wont be progressive? in that its just part of the syndrome and its likely that its always been this way and its not progressive?

I guess what I wanted to hear was. "Yes Ive had a look at the MRI and we will discuss at our next appointment.

We are scheduled to see him in 6 weeks, I figured its not that far away. Sarah is currently in amazing health.

So yesterday I trotted off early in the morning to the health nurse for Sarah to be weighed, then I had another appointment and I hadnt even given my email to Tony a second thought.

When I got home yesterday our Social Worker had called asking me to call her back. So called her back we discussed a few issues at hand and then she said well Ill see you on Monday.

Monday? Whats on Monday? You must be mistaken. I have an appt with John on Wednesday and with Daryl on Thursday. Then she said did you not get Tony's message.

My heart sank. I froze for a moment, then pulled myself together and said hang on Ill check my emails.

And there is was

Dear Karina and Michael,

We certainly need to meet to discuss the MRCP results - I do have a clinic next Monday 18th Jan - would that be convenient? We could meet at 3:20 in the afternoon.

Our Social worker has said that he asked her if she can attend the appointment :( Going on previous experience there is only one reason a Social Worker is requested to attend a meeting.

So while part of me is optimistic that its simply that he has had a cancellation, I just know deep in my heart thats not the case, and what is so imprtant that it cant wait just 6 weeks until our next scheduled appointment.

So now I need to try and distract my mind for another 6 days thinking of all the possibilities of what is going to be told to us, why he has requested Social Work support at the meeting and what this all means for Sarah.

I guess its just so hard to have fought and fought and battled and battled to get Sarah to where she is today and I dont know whether deep down, I, Michael and Sarah has the strength for another battle, things have been going along so well in the last month, I just dont wont to hear any bad news right now.

2010 was meant to be the year of happiness and health and well its not looking to positive

Anyway I am signing off here, sorry for such a negative posting. I am just drained and needed to get that out somewhere

2009 - A year in review

2009-12-31T23:20:00.000+11:00

Dear Sarah,

Well its been a long 12 months, so I thought Id write this note to you so when you are older you know just how far you came in the first 12 months.

12 months ago today we arrived at the hospital to be introduced to "Ruby", you now sleep with Ruby every single night and Ruby is the bear with Diabetes so she is just like you. As you get older ruby will help you with your Diabetes, one injection for you, one for Ruby.

Arriving at the hospital that day we knew deep in our hearts they were going to tell us you had Neonatal Diabetes, we just had no idea it was because you didnt have a Pancreas, at the time to us all it meant was you would need insulin for the rest of your life, oh how we wish it was that simple!

You were laying there in your humidicrib and had just received your 5th blood tranfusion, not bad for a 5 week old! You weighed a massive 1016 grams!

You achieved so much over the next 3 months, we were told that you have a very slim chance of survival and that we should think about making arrangements for you.

Every step of the way though you showed everyone that you had the strength to fight this. You battled NEC twice, you battled bleeding in the brain, you battled the continous fluctuation in blood sugars, malabsorbtion, lung infections the list goes on.

We were over the moon to bring you home after 16 weeks, it was the absolute highlight of 2009, you defied the odds and the Drs and you never gave up.

The next 3 months saw you settling into life at home, we had many Drs appointments and we still struggled to control your diabetes, but 3 months after being at home you had grown from 2500grams to 3700 grams - not bad considering all you deal with.

Between months 7-10 it was tough - you got sick in July and the Drs had no idea what was going on, you battled a bad reaction to your immunisations which landed you in hospital for 11 days with a stay in PICU just for good measure! You battled chest infectioons and Pneumonia numerous time, you ruptured your ear drum and went into Diabetic Ketoacidosis, but you battled through it all and continued to grow and amaze us.

Months 10-12 were an amazing time. We learnt alot in these months. You went into cardiac Failure and had open heart surgery, you scared us after the surgery with another emergency call but you bounced back and came home 5 days before your birthday.

Your Bday was amazing, I was so elelated that we made it, it was such a fantastic day and you looked so so healthy and happy. Your nanna and pa even came from interstate to help you celebrate.

The week after your bday you had to have a MRI. You had another reaction to the Anaesetic and took 12 hours to wake up. You then collapsed a lung and got Pneumonia again. It was a nervous wait for your results. Finally the results came in and we breathed a sigh of relief that your seizures hadnt caused any brain damage.

We found out that you have a condition with your bile ducts. There is no treatment and no cure, only baindaid solutions. We just know with the strength that you have had over the last 12 months that you will give it everything you have though.

You have taught us so many lessons over the last 12 months, you have introduced us to people we would have never known. You have shown us strength that we didnt know we had. We are so very thankfiul for that.

My precious girl - We made it. Im declaring a new year! You were never expected to see 2009, so to be here with you seeing in 2010 makes me incredibly proud. Here is to a year of happiness, tears, joy and healthy times ahead.

Happy 1st Bday to our Princess

2009-11-30T10:38:00.000+11:00

Happy 1st Bday Sarah

We actually made it!!!!!

Its been about a month since Ive updated, so I promise to update alittle more often, time just flies by so quickly and I need more hours in the day.

We have had a massive month - As normal its been a month of highs and lows but its great that we have more high's than lows and talking about in general here, will get to Blood Sugars further down the page!

First event of the month was Sarah perforating her eardrum earning herself a 2 day stay in hospital, for a ear infection of all things

We then took Sarah on a plane trip to meet Michaels side of the family early November, it was great to get away for a few days and Kevin, Jess and Cooper got to spend a few days with Nanny Caton. It was a little quiet though with only Sarah with us, Here Sarah is with her Great Nanna, a photo to treasure

We came home and prepared for Sarah to have another Surgery! the day before we left Lismore to come home Sarah started sounding congested and I was optimistic that it was "just a cold" and would pass quickly. However we arrived home and the next day Sarah had an appointment with her Endocronologist, she was sounding quite congested and off her feeds a little but she wasnt that bad I didnt think. We see her Dr and straight away she said to me " She looks and sounds like she has Bronchiolitis, you are going to have to take her to emergency to have her Sats checked and have her checked over by the Gen Med team. Her sats were fine but her feeding was well down so they kept her in for a few days.

This helping in the anticipation leading up to her Heart Surgery. I was far more "relaxed" about it then her other surgeries and infact was more stressed about her Diabetes Management than the surgery itsself!

The Surgery went off without a hitch and after a long day waiting she entered theatre at 230pm, it was expected that the surgery would take about 2 hours. At 430 there was no word but history told me that were always optimistic with Surgery times and had ran overtme on the prevous occassions so we wernt too worried. Finally at 530 we got the call from her surgeon to say all had gone well and she should be in recovery in the next 15-30 mins. So I walked DH to the car as he had to get home to the other kids and came back to the waiting room. However at 630 I still hadnt been called through to recovery so started to worry, I went and rang the intercom and was told they had a few complications getting the breathing tube out and it would be about another hour. I paced up and down that waiting room just taking depth breaths and driving Michael mad with phone calls to try and pass the time.

Finally I got called through about 745pm and the relief was amazing, Sarah was still rather drowsy but she did open her eyes just to let me know she was ok.

The Anesthetist came to talk to me about a few problems they had collapsing her lungs and getting the breathing tube out and to check her stats. She was going well, was on a little bit of oxygen, but her heart rate and resp rate were great. The surgeon had used a local anesthetic at the wound site and he explained that it would soon wear off so they would start a Morphine infusion. An xray man came to check the central line was in the right place and then we headed up to the high dependency ward.

Once up there the cardiac resident and the 2 nurses that were going to be looking after Sarah were getting a handover from the recovery nurse and they suggested I go and get a coffee while they settled her in.

I went downstairs to call Michael and as I was talking to him on the phone I heard what no mother wants to hear. "MET 7West Rm 3" A MET is Medical Emergency Team or commonly known as a Code Black. I raced up to the ward and the hospital were calling michael to let him know what had happened. When I got up there, Drs were everywhere. Her heart rate dropped into the 60's and her Sats into the 80's. She scared the living daylights out of me. They turned the Morphine off for a few hours then turned it back on at a much lower rate. One lesson learnt is that Sarah is extremely sensitive to Morphine.

We came home after 5 days, Sarah is just such a little trooper,

So we thought we were in the clear for her birthday when last week I woke Sarah in the morning for her feed and she was a little out of sorts, she had her feed and brightened up a little. I had an appt that day with her Cardiologist and he had one look at her and sent her around to emergency. I was standing at the Triage desk and she went all limp and floppy and the nurse grabbed her from me and said she is having a seizure. After being assessed they decided she would need to come in for some tests to see if it was seizure activity. She had a EEG done and was booked for an MRI. The EEG didnt show any activity and we ended up coming home the next day without the MRI as there was a 2 week wait on the inpatient list, so we are on the outpatients waiting list. Due to her coding after each surgery they are booking her a bed just in case as it will need to be done under a General.

So the 28th of November finally arrived and what a wonderful day it was. Sitting here now on Monday morning and I can reflect back on the last 12 months, it has certainly been the most challanging 12 months of mine and Michaels life, its been filled with so many different emotions and Ive learnt so much about myself and about the world and how cruel life can be, but Ive also had so many happy memories, Ive seen absolute miracles happen right before my eyes.

I was going to update on how Sarah is going but Ill leave you with a photo of Birth and yesterday and come back later with an update on Sarah herself.

Such sweet natured Children

2009-09-29T22:56:00.000+10:00

Today I was out with Sarah at yet another appointment and as I returned home I was greeted at my front door my my 10 year old son Kevin.

I know this Blog is about our Journey with Sarah and living through Neonatal diabeties and a big part of that is how we function as a family.

Without a doubt its family that got us through in those very early and uncertain times.

At night when I blew Sarah a kiss goodnight through her isolette and with every bone in my body wanting to just pop her in my handbag and run I had something that alot of other of my fellow NICU mums didnt.

I took the 1 hour drive home each night and was able to tuck my other kids in bed, I was able to get their uniforms ready for the next day at school, I could kiss them goodnight, read them a story and give them a hug and try and reassure them that all would be ok and their sister would be home before they knew it.

It kept me going, it kept Michael going.

Why?

Because we had to. No matter what had happened that day, no matter what news we received that day or how good or not so good Sarah was going we had to keep putting one foot in front of the other and we had to survive. We had 3 children who needed us. We just had to function.

Did we function as normal?

Not at all, but we tried our best. Sure we didnt do walks to the park. They missed playdates with their friends. Christmas wasnt as festive as other years. The Christmas tree never made it up, but we survived.

So Id like to write a little on each of the kids.

Kevin - Kevin is about to turn 10. My baby I cant believe he is almost in double figures, where oh where does 10 years go! Kevin is one of a kind.
A few years ago I took my eldest to a Paediatricain for a developmental checkup, only a few months prior we learnt that Kevin had Asperghers Syndrome, it didnt come as a shock as I had known for quite sometime that he likely was on the Autism Spectrum somewhere. But what I was to learn from that appointment had us in a state of shock. After the Dr had noticed a heart murmour, something that had never been noticed before we set off for further tests. Over the next few weeks we learnt that Kevin had been living with a heart condition right from birth. He had a hole in his heart (ASD) and also a partial heart block.

We set off to a heart surgeon and the next 12 months was filled with waiting lists, more tests, surgery cancellations and finally he had his first catheter surgery in October 2008. He was booked for his open heart surgery on the 28th December 2008. It was cancelled at our request due to Sarah's birth and is now scheduled again for Early January 2010!.

Kevin is just so incredible with Sarah, he has a heart of gold.

Jessica - Jess is my my eldest daughter. Im very proud of the little girl she has turned into. She started school last year and it really has bought out the best in her. She is a very popular little girl, my social little butterfly. To watch her with Sarah is just amazing. She is so gentle and affectionate and it just melts my heart to see her interacting with Sarah. She helps alot with Sarah, always wants to cuddle her and help feed and change her and if she is crying will run from the other end of the house to make sure she is alright. I will never forget standing in the kitchen crying on the night that we were told that Sarah would quite likely pass away within a few weeks and Jess saying "Mummy is Sarah going to heaven". She was never scared to look or touch Sarah and the first time she held her it was just amazing.

Now onto my baby (because you know all about Sarah!)

Cooper - Coopman is almost 5, again the time has flown by! He is the opposite to Kevin. He is very outgoing which has been a good thing as it has bought out the "boy" in Kevin. Cooper is always into something or always hurting himself in his attempt to be a super hero! But he is the most sweet natured child, he gives me lots of kisses and cuddles and just adores Sarah like no tomorrow and is almighty protective over her! Its great being home now and being able to spend some good mummy and cooper time with him.

Inspiration of Hope, Love and Life

2009-09-21T01:13:00.000+10:00

Well I attended a first bday party of a little boy dear to my heart today.

His mum wont mind me sharing his name, so it was the first birthday of dear little Henry.

Id like to share a little of how we come to know Henry and his Parents Loren and Joe.

I remember it like it was only yesterday.

Sarah had been transferred to the RCH, she wasnt well. She had a ventilator breathing for her as her tiny body was beginning the fight to live. There she was all 700 odd grams of her fighting with every ounce of energy she had.

I was sitting in the parents retreat, a place where parents could sit down, sip a cup of coffee and take a break from all the monitors, tubes, Doctors and nurses, all the tests that were being done on our tiny babies and the general busyness of the ward.

So on the 1st of December here I was sitting on the couch, holding a pink teddy bear. I was sore, it was excruitiating to get up and down, to walk around and my heart was aching for my baby, for my babies at home, for Michael.

In walked this Mum, she looked alot more emotionally stronger than I did. One look at her and I could tell she had been here for a while.

Then she introduced herself. She said Hi Im Loren and we got talking. Relief came over me. I knew someone now. Someone to share this journey with. Our children were very similiar in ways. Henry was a little 28 weeker, he weighed just 740 grams at birth only 5 grams more than Sarah and he was due the 28th November - the day of Sarah's birth!

over the next few days we laughed, we cried, we shared our journeys and I learnt so much from Loren and Henry.

Hope - People often have said "you are so strong", "how do you keep going day after day" In one word it was hope and a lot of that hope came from Henry. Henry had came to the Childrens NICU at 7 weeks old, he had major lung problems. The team of miracle workers there operated at his bedside and they removed part of his lung in an operation which Loren was to learn after had never been preformed on a child before EVER. Not just in this hospital but it was the first operation on a child in the world. Here was her 1kg baby not even meant to be born yet making medical history. Henry had made it through his operation, Hope takes us such a long way.

Love - The love we have for our sick premmie babies is so hard to describe. We love them to the ends of this world but at the same time we are scared, we are scared of loving them too much incase we are going to loose them, we put up a brick wall and while every inch of our body wants to smash that wall down, part of us cant. The love Loren and Joe had for henry was just amazing.

Life - After 3 months on a ventilator I will never forget the look on Lorens face as she told me that henry was off the ventilator and onto CPAP. Henry was defying the odds, he was showing us all the definition of Life.

I think we all look to others for these quality's Hope, Love and Life. We look to others that have been there just before us, in an NICU environment its something that keeps us going, we look for the inspiration.

We had many a days were hope was gone, but Love and life was always there. Whether it was getting home to listen to messages from friends and family or it was sharing tears and happiness with my NICU angels, a card saying "congratulation on the arrival of your baby", or kissing my children goodnight and tucking them into bed each night. Life kept us going. We had others relying on us to love them and to keep life going on for them.

So Ill finish off by Saying

Happy Birthday little henry. In 12 months you have grown from 740 grams to becoming a member of the 7kg club, little mate that is 100 times your birth weight! You are a champ. Your mummy and daddy are two very special people to us. They are my inspiration. The hope that you all gave us cannot be expressed in words but know that you will always hold a special place in our hearts.

Henry you are a true Aussie Battler. In three words you are Hope, Love and Life!

May your second year of life be far less challenging, with no detours and roadblocks and full of sweet and happy memories.

PSTD

2009-09-05T02:52:00.002+10:00

Wow thats the first time Ive written that word.

Where did it start? How did this happen? How did I not know?

My story starts some 12 months ago.

I was 25 weeks pregnant and my OB had referred me to a fetel medicine specialist to perform an indepth scan of our precious baby.

She scanned and scanned and scanned, she asked questions over and over again. How many children have I had? Where they early? How big were they at birth? Are they healthy?

Then at the end she said "Im afraid there is something wrong with your baby. She has severe IUGR. You are 25 weeks pregnant and your baby is measuring 21 weeks. I cant find anything specific but I recommend you have Amnio ASAP.

I was admitted to rehydrate as Id been sick for a week with vomiting.

My OB came, talked about Amnio. I wasnt comfortable with it, I was 25 weeks, a positive result wasnt going to change anything at this point in time. So I declined an amnio, I didnt want to take the risk.

After many "discussions" about my decision I was getting tired, tired of justifying my decision. At 28 weeks I got a call early in the morning, apparently I had missed an appointment.

I get there 20 mins later and they were all set up, I had no emotional strength so I relunctily agreed to the Amnio.

That night I felt a gush of fluid. I was only 28 weeks. Contractions started soon after. Luckily at 3am the drugs kicked in and they managed to stop things.

another week in hospital and I could home on bedrest.

Then again at 30 weeks, more fluid, more contractions and more drugs to stop the labour.

I was now on daily monitoring, daily CTG's and secod daily scans. My baby wasnt growing.

Then one friday I went for my daily CTG, they count find the heartbeat. Taken for scan and relief as the heartbeat was found, albiet is was very low, there was no bloodflow from the cord to my precious baby.

My OB rushes in and says this baby needs to come out. Im only 31 weeks and my babys estimated weight is 736 grams, about the size of a 25 weeker.

30 mins later my baby is Born. Welcome to the world Sarah Claire - weight estimate was spot on, she weighed 735grams, 37cms long and HC of 24cms, so tiny.

We spend 118 days in the Neonatal Unit of the childrens hospital, the NICU where the sickest baby are sent, its the last stop for these babys, if the Dr's here cant treat them its the end of the road. Sadly not many baby's leave the ward to go home.

We made it out the Doors, not without alot of heartache, alot of emotional and physical trauma.

My baby made it though. She has no Pancreas, No Gallbladder and a heart defect.

She is an insulin dependent Diabetic, she has trouble absorbing the nutrients she needs to survive, she has a problem with her heart.

Then yesterday after cancelling 4 appointments I go and see a councillor.

She was the Social worker at the Neonatal Unit, but now has set up her own business.

She saw us through NICU, she was there when they told us she wouldnt live. She was there when I said I told you she would make it, she was there when I would just breakdown in tears, and when I would laugh at the smallest milestone.

And yesterday she said Karina - I saw what you went through, it was incredibly traumatic where you went from mentally planning a funeral to taking your child home with a lifelong illness.

So Post Traumatic Stress Disorder.

I dont know how to react. I dont know how to explain it to people.

I want to return to normal but I dont think I ever can. My life has changed, I think for the better. I see things more clearly now, the things that matter.

Ah its good to get that out.

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What is Pancreatic Agenesis

2009-08-01T16:53:00.003+10:00

Here I am again, my second entry for the day, I am on a roll.

I have been asked quite often "What is pancreatic Agenesis" and the easiest explanation is that "The pancreas is absent", well that is the easy explanation but below gives a good description.

Pancreatic agenesis is a rare cause of neonatal diabetes mellitus and the knowledge about the clinical features is sparse. A patient with pancreatic agenesis and double outlet right ventricle is reported. This association has not previously been reported. In addition a synopsis of the patients (n = 14) with pancreatic agenesis who have hitherto been described is given. METHOD: We studied one patient and obtained information on 13 additional patients with pancreatic agenesis by reviewing literature. RESULTS: Literature review: In one patient the pregnancy was terminated at 19 weeks. 31 % (4/13) of the infants died in the first week and 69 % (9/13) in the first six weeks of live, 17 % (2/12) were born preterm and 83 % (10/12) at term, 93 % (13/14) had severe intrauterine growth restriction, onset of diabetes was in 6 out of 10 infants during the first two days of live, ketonuria is rare and has been reported only once. 64 % (9/14) of the infants with pancreatic agenesis had additional malformations mainly of the biliary system (50 %) and/or the heart (36 %). 31 % (4/13) of the infants survived the neonatal period and developed normally. Failure to thrive was compensated by catch-up growth after replacement of pancreatic enzymes and surgical correction of the cardiac malformation. CONCLUSIONS: Pancreatic agenesis is a clinical entity characterized by severe intrauterine growth retardation, early onset of permanent neonatal diabetes mellitus without ketoacidosis, failure to thrive due to pancreatic exocrine dysfunction and associated malformations mainly of the biliary system or of the heart. Because of the high neonatal mortality, awareness of pancreatic agenesis as a possible cause of severe intrauterine growth restriction is important for the optimal treatment of diabetes mellitus, exocrine pancreatic insufficiency and the associated malformations.

I know its a bit in depth but that is one of the best explantions Ive come across, the girl in which this paper was written on is a German Girl and its so eerily similiar to Sarah, there has actually been no further mention of this girl since this paper so its not known if she is still alive.

Onto Sarah its beena hell of a Month with being admitted to hospital 3 times! First time was for 8 days after a reaction to her immunisations which she actually didnt receive them all! We were home for a week before she came down with Bronchiolitis and back in for 3 days needing extra oxygen support, then home for only 2 days before we were back in again with high sugars and high ketones. She has now developed a nasty chest infection but for the moment we are at home!!!

We saw her Neonatiologist 2 weeks ago and he is exremely happy with her and her progress, we continue to make changes to her management plan and her Paed is keeping a very close eye on her.

Ill sign off with an article that was in the paper a few weeks ago

http://www.news.com.au/heraldsun/story/0,21985,25806098-661,00.html

Firsts

2009-08-01T12:28:00.002+10:00

Well as we know we all keep a list of first's to look back over, normally they would be smiling laughing, sitting, crawling, teeth, standing, walking on furniture, rolling.

I thought I would share some of our firsts that have meant alot to us.

First time I saw Sarah
Sarah was 24 hours old and I was finally able to walk down to NICU to see her, she was so so so small, must smaller than she looked in the photo they had given me in recovery. She also looked alot pinker than she was in the photo

Our First Hold How I had been hanging out for this day. Finally after 11 days we were able to have our very first hold. Both Michael and myself were at the hospital. She was so so tiny and she was on CPAP, you could barely feel her weight! Light as a feather took on a whole new meaning. We would have to wait another 2 weeks before we could hold her again, so we savoured the moment.

First Nappy Change I remember the very first nappy I changed, as a mum of 4 you would think I would have had some idea, but changing a 1kg baby is so different from a 3kg baby! Her legs were like matchsticks and it felt like they would snap in half. So after 3 weeks I changed my first nappy

First time on the scales - 806grams is what she weighed in at. She was weighed at birth and this was 3 weeks later, it was after her first surgery and she was finally stable enough to be handled and placed on the scales.

First Bangle - When Sarah was 10 days old Michael decided to see just how small her hands where and he slipped his wedding ring over her hand, so so so small

First operation - Not one you want in a list of firsts. But her first operation occured on Day 6 of life, it went for 3.5 hours and was done at the bedside as she was too unstable to be moved to theatre.

First smile - how special was this moment and it was captured on Camera by her nurse. I had her out for a hold, she was 8 weeks old and she looked up at me and smiled, such a special moment, absolutely melted my heart

First Christmas - We had grand plans for Christmas last year. I should have been pregnant, we had planned to have it at home just the 5 of us for the first time, something low key an relaxed while we awaiting the arrival of our bundle. Sarah had taken quite a large step backwards on Christmas Eve and on Christmas day was receiving another transfusion so we didnt get to hold her, but they did dress her in a nice Christmas dress and we snapped lots of photos and Santa didnt miss her!

First time in open air - I arrived at the hospital on Black Saturday to see Sarah laying in a pram - the first time she was out of her incubator for anything other than a 30 minute hold! and she was laying there in just a nappy! The hospital had lost power and were running on generator power but had no Airconditioning and it was hotter in her isolette than it was in room air so out she came! She only lasted about 2 hours after the aircon came back on as she temp was dropping but it was a big step.

First time she fed from a bottle - What a day it was. After 10 weeks we had finally got her off continous nasal gastric feeding and were offering her a bottle feed, all 14 mls of it!

First breastfeed - It came not that long after her first bottle feed at 12 weeks and she took to it like a champ!

First time leaving the 4 walls of NICU - I came in late one night after going home for dinner and her nurse was walking around the room with her. OMG she no longer had any "long lines" she had started her journey with one in each arm and each leg so this was real progress, I could finally dress her in "normal" clothes. The nurse then said " Did you want to take her over to the parents retreat" I was jumping for joy!

First playdate - Ok so not in the most traditional of places for a playdate but her first was with some friends that were due the same time as I was. Sarah was still so tiny, just shy of 2kgs but for 2 hours it was like I was just being a mum sitting down chatting with other mums and babies, it was bliss

I think I might leave this here, as it getting long and continue the rest of her firsts on another day.

The memories are coming back, how very far we have come from the days where things were so uncertain as to whether Sarah would make it home.

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85 Days such a Milestone moment

2009-06-18T19:43:00.003+10:00

Its been a while since I added an entry.

Ive journalled each day of Sarah's hospital stay in the good old ways of Pen and Paper, must remember to add an entry in here a little more often.

Today marks 85 days since we bought Sarah home.

Sarah has far surpassed anyone's expectations including our own. As I was being rushed to theatre and DH got the call he was told "its not looking good", She wasnt expected to make it through the night on that day she was transferred to the RCH. Then we were told that the surgery would be dicey.

Then at 4 weeks of age we were told to start making memories as she didnt have long left, they thought only a few weeks. She passed that goal and when we met with her Dr again he said enjoy her as much as you can, I think 3 month is the limit.

So she made it to Day 85 - the lead up to that week was filled with alot of emotions, she actually went downhill quite quickly in that week and we thought she was slipping away, but she again pulled through and it was a turning point moment.

The next 4 weeks went so quickly, she was quickly heading towards 2kgs which meant she could have the operation to close her Stoma and come home at long last. It has been such a harrowing journey filled with so many ups and downs. Its been filled with sadness and anxiety but also with absolute joy. Each milestone that Sarah reached were so happy moments. I remember in the early days of the joys of even holding her in my arms, they were limited to about 30 mins and I just loved having that close contact with her, I didn't want to put her back in her "hot house" as it would be several days before we were able to hold her again, or if it would be the last time I held her as a living child.

In the 4 weeks between day 85 and day 112 when she came home, that I really bonded with her. She had come out of the humidicrib into a open cot and was in the SCU rooms and not the NICU rooms. I was able to pick her up when I wanted, I could change her nappy, it was in this week that she had her very first breastfeed and I was able to take her off the busyness of the ward and into the parents retreat, there we sat for 2 hours and I just started at her in amazement. There were no nurses, there were not monitors, it was just Sarah and I and another one of the NICU parents.

The day before her final surgery I was able to bring her home for the day. I got not a wink of sleep the night before! I was so excited. It had been 94 days of sitting beside her hoping and praying that this day would come. I was jut elated.

The day went quickly and before I knew it we had to head back in. I sat there just holding her that night, telling her that after tomorrow another hurdle will be crossed and we could really start planning her homecoming.

Her surgery was expected to be straight forward. She was first on the list. I arrived at 7am to sign the consent forms and have a final word with her surgeon. It was expected that it would take about an hour.

An hour passed and there was no word, I was getting quite nervous by the 1.5 hour mark, then finally after 2 hours her surgeon came into see me in the waiting room. Her surgery had gone fine, there was a complication but nothing they were not prepared for. I walked behind her as they took her back to NICU.

Seeing her back on life support was really hard, harder than I had imagined, for some reason it looked far worse than it did the first time she was on the ventilator. The next day they had tried to take her off but she had forgotten how to breathe and was still fairly heavily sedated. Finally after 2 days they did manage to get her breathing on her own again and I sighed a massive sigh of relief, another hurdle had been crossed.

late on day 2 she became quite bloated and by day 3 her stomach was becoming distended. This so most nerve wrecking because the reason Sarah originally had the bowel surgery was because she had never passed any bowel motions and part of her condition of no pancreas was most of the others had no Bile ducts and was the reason that they didn't survive, so when the distension started again before we had started feeds there was talk that Sarah was indeed missing her bile ducts and if that was the case, the only treatment we could offer was Palliative.

The surgeons were called in again at midnight day 3 post surgery and after looking at her bloodwork and xrays they came with the news I so didn't want to hear. Sarah had again got NEC, I couldn't believe it, not only had she fought it off and won the battle once, she now had to do it all over again!!!!!! I told the man upstairs to just move right along from Sarah, she had been through enough and so had we and could he please cut her some slack.

So she was started on Anti-biotics to review in 48 hours, she became sicker over the next 24 hours and kept the Dr's on their toes but she then started picking up.

Finally 10 days post surgery, the distention was gone and feeds were started. This was our start to the road to home, finally the light had been turned on.

So here is a photo of Sarah now 85 days after coming home, she truly is my living miracle. We treasure each and every day as if it is the last and now that what ever happens we have been shown a new view of the world and of life and we forever treasure those lessons and adventures that we are on.

Almost 6 months down the track

2009-05-23T04:18:00.002+10:00

Wow - I cant believe that Sarah is soon to be 6 months Actual age.

What a 6 months it has been and how far we have come from that day back in November.

That day changed my life, it changed everything I stood for, it allowed me to grow, it allowed Michael to grow.

NICU can be the most daunting place on earth, it can put so much pressure on your outside life and I think for alot of people it can either make you or break you and you deal with the effects for months after you come home.

I kinda like to think of it as a holiday, probably not the best example and there probably is a better word but its 430am and its the best my brain can do!

When I fell pregnant it was like we were taking a holiday to Paris! paris is great, its the city of love, its prestine, its where we were going.

So I boarded the plane and our vacation was to begin.

Only we touched day well before it was meant to and we heard "Welcome to Thailand"

Thailand I say, we are meant to be in Paris and we are not meant to be there yet.

So we accept that we are on a detour and we embrace Thailand, we start to explore out new destination, but I still dont want to be here, I want to go home and wait until we are meant to leave for Paris.

As time goes by we get use to Thailand, we start seeing things differently, ok so its not what we had planned but we have to do the best with what we have.

4 months later and we love Thailand, we cant even imagine wanting Paris anymore, this place has grown on us, it has its challanges but when we face them head on together they dont seem so bad after all. Thailand has become such a special place for us and a place we will never forget.

But its time to go home, we have learnt so much here, and we have met so many people from all walks of life and they have taught us some very precious lessons.

So the burning question is " How is Sarah doing"

The answer is "better than expected" she continues to amaze us day in and day out. She smiles all the time now, even smiles at strangers and not just us, she would look and play with her hands all day long! Tonight I thought she was going to chew her arm off!!!

We have had a few follow-up appointments with Neonates this week, overall they are extremely happy with her, she has her issues but on the grand scheme of things she has far surpassed there expectations. Her Dr said on Wednesday that it really makes his job worthwhile when babies such as Sarah beat the odds, he doesnt actually take on alot of longterm patients anymore, much prefers the "fatfarm babies" that are in and out in a few weeks, but I am glad he took Sarah on because he kept on digging until he found an answer, he got all the right people involved in her care and his quick diagnosis and treatment quite likely is what enabled her to beat the odds.

What is the longterm outcome for Sarah?

Unfortunately we have no idea, Sarah could slip away at anytime, she could also go on to live a happy, healthy long life. What is known is currently the oldest survivor is 6 years old, that is the known survivor there could well be others out there that are not documented. Pancreatic Agenesis is so rare that there in no name for the Syndrome, it depends what you read on the net as well, alot of sites say that the condition is "incompatible with life" well there 3 out there proving them wrong!

One of the big concerns with this condition is Liver Damage, Sarah is showing signs that slowly the condition of her liver is getting worse, but its slowly degrading and the Liver does regenerate itself.

Is Transplant an option

The quick answer is Maybe. Liver transplants are well advanced and the success rate is great, it can also be a live donation, so I could donate to Sarah, the Liver is one organ that does regenerate so I could donate a portion of my liver to Sarah. Pancreas transplant is another matter though, pancreas alone transplants are not as advanced as Liver's and certainly not in a child. I am not aware of the RCH transplant team performing one on a baby before, not a Pancreas alone. The issue is as she doesnt have a pancreas does she have the other structures surrounding the pancreas for a donor pancreas to take, this is the big unknown and maybe the only way of knowing if to try it, or for one of the 3 children to try it.

There really is no easy solution, however with Stem Cell research being opened up in the USA a better way t manage these kids will be just around the corner.

Managing a baby with Diabetes - how do we cope?

I wont lie, its hard, its really really hard. Some days we are chasing low sugars all day long, the next we are chasing high's and just when we think we are seeing a pattern things change and it just confuses us even more, the joys of Diabetes.

I would say on average we hit out target Blood Glucose levels about 70% of the time. the other 30% we are chasing either high' or lows. High's dont actually bother me too much, sarah rarely develops the dangerous Ketones, the lows however are concerning. A low is considered anything under 4.0 quite often Sarah drops down to between 1-2, ive become so immune to it though it just forms part of our day and we just get that Sucrose out and sarah sucks it down like a lolly pop!

Anyway its now 5am and its feedtime again, so I shall sign off her.

I promise to come and update abit more tomorrow.

Kat

2009-05-09T17:12:00.001+10:00

Reflections Part One

2009-05-08T23:49:00.003+10:00

Well its been a little while since I last added an entry. Life has been quite busy since we came home with our Miracle, Im not even sure where to start.

Well we were discharged after 112 days, it was such a long time filled with such mixed emotions, looking back I really have no idea how I held it together.

I met such mixed familys while in NICU, alot of them where there with their first child and somedays I would find myself saying if this is going to happen then you want it to happen with your first. You can spent as many hours as possible at your baby's bedside without the worry about other children, in so many ways it was more desirable. But then at night I would return home and even if it was midnight, I would pop into the kids rooms and kiss them on the cheeks and know how lucky I was, they were one thing that kept me going, I had to keep going because not only did my tiny tiny daughter that was laying there in hospital putting up the biggest fight for her life, but I had 3 other children at home that needed me to be strong for them and tell them that everything was going to be ok.

I remember that meeting with Sarah's Consultant like it was yesterday. He broke the news of her diagnosis to us and told us to prepare to say goodbye and to make as many memories as we could in the time we had left. That day I was driving home, the tears were streaming down my face and had no idea what to do, where to turn or why all of this was happening. I was meant to be pregnant still, why wasnt I pregnant still, why had I been thrust into this experience, why was Sarah bought into a world she was not ready for and why on earth would I be given such a precious gift only to loose it with the blink of an eye.

I got home and DH was already home and we cryed some more. Our darling 6 year old knew something was wrong. She must have overheard Michael and I talking and she said "Mummy is Sarah going to die" I froze on the spot, what am I meant to say, how do I possibly explain this to a 6 year old, does she even know what Die means. I simply told her that Sarah was realy sick and she was in the best place to get better, I couldnt break her heart and that was the only answer I could come up with on the spot.

That night we sat in bed and we both discussed things that we needed to organise, it felt like we had admitted defeat, we were going to loose our little girl, the Dr's believed we had done everything for her, but sadly there was just not enough known about Pancreastic Agenesis hence why the survival rate was so low. We made a list, have Sarah Baptised, get video camera, call Inlaws and tell them not to put off coming to meet their newest granddaughter and the final thing on that list we could not bear to write, couldnt bear to even think about it.

The next morning I woke up and I was not going to admit defeat, Sarah needed us to be strong for her and that is what we were going to be. I could not think about "making memories" and "preparing to say goodbye", all I could think about was getting this tiny precious little bundle home to her cradle, to her brothers and sister, home to grow into a outgoing, formidle little girl.

As the days and the weeks creeped by I got a little more hope, she was so tiny and there were days where we thought she is giving up, but we never gave up hope. There were hundreds of people following her journey, reading this blog and following her journey on Essential Baby - this was such a lifeline for me, more than people probably realised because when I was falling down they were there to pick me up. To come home after a long day at the hospital and to just read the words "Kat - just checking in to see how you are Sarah are doing today", see I had to keep going and knowing that so many people were hoping and praying for Sarah, for me, for our family was a lifeline. Same with the sms's, the emails, the phone calls, the visits from friends. Even though I had been thrown on this rollercoaster to know that people were going out of their way to visit really was special to me.

NICU can be such a frightening place, especially if you have not ever come accross one before. For people to visit would have been very confronting, they didnt have to but they put there own fears aside for Sarah and it was good to let them into my life for those few hours they were there.

I have so many thoughts running around my head, so my apologies if this entry is alittle scrambled, I promise that Im not doing a Quinten Tarantino on you!

Ive had alot of people say you are such an inspiration, you are so strong to be dealing with this and I really think it came down to the fact that I thought if I broke down who would be there for Sarah. I did however have what I later called "mini-meltdowns" where the emotions all became too much, something would happen to trigger it and I would just cry, cry until there were no more tears to cry. I wanted off this rollercoaster but I couldnt, it just wouldnt stop. There were times where I though "Are we doing the best thing by Sarah, or are we delaying the inevitable" I really had no idea.

Christmas day was the ost Bitter sweet day Ive had in a long time, looking back I could have done better, but at that stage we had no idea what was wrong with Sarah and was very much a hour by hour thing. No Christmas tree went up, there were no flashing lights on our house and Christmas presents wernt even wrapped until Christmas Eve. I had no excitement on Christmas day, I got up and went through the emotions and as I sat on the lounge that morning watching the kids excitement as they opened there presents, I looked around the room and sadness overcome me, Christmas is about coming together as a family and we were far from that, our family wasnt together, At this stage I didnt believe it ever would be on Christmas day.

We had lunch together and the kids seemed to be enjoying the day, I was just staring into space, after lunch we headed into the hospital, as I was driving you could see kids out the front of houses, you could hear the laughter coming from inside, the cars all linning the street as family's and friends celebrated together and here we were driving to the hospital.

I hadnt had a hold of Sarah for about a week by this stage, my arms were aching to hold her in my arms, she had been pretty unstable and on Christmas Eve required another blood transfusion, her 5 in her short life this far. We get to the hospital and the nurse had said she had a fairly rough night but she had given her a sponge bath that morning and put her little Christmas Dress on her that Mihael had bought for her the day she was born, but that was the most handling she could deal with today, so we wernt able to have her out for a hold, my heart was breaking piece by piece.

I think I am going to sign off here for now, but I shall come back tomorrow and write a few more thoughts down.

Sarah Claire - A montage of her Journey from 735grams to 2560grams and home where she belongs

2009-04-05T16:41:00.001+10:00

Make a Smilebox slideshow

112 days, 16 weeks later and Sarah makes it home!!!!

2009-04-05T11:58:00.002+10:00

Well finally after 16 weeks we made it out the door. It was the happiest day, I really couldnt believe that the day had come!

I cant believe where this journey has taken us, its seen good days and bad days, emotional turmoil, joys, hope, tears and tantrums and huge signs of relief. Its seen so many tears - Tears of hope and joy and tears of sadness.

On the 28th November 2008 I went to the hospital for a routine CTG less than 30mins later I was being knocked out and Sarah was going to begin her fight for life, and my god fight she did.

Everytime a Doctor said "its not looking good" she heard them and proved them wrong, she wasn't going to give in that easily.

First it was the first 72 hours are critical - then 48 hours after birth, her Dr came to my room, her face full of fear as she delivered the news that my girl was critically sick and a specialist team had been called to come and retrieve her, she needed specialist care above what they could give her.

Then we meet with the Dr's at the RCH and they had that same look. Don't get our hopes up you say, well Miss Sarah heard you and she has proven you wrong.

At just 735grams you operated on her, found the issue with her bowels "Malrotation of the bowel" Ive learnt a lot of medical terminology on this journey and I hope never ever to hear it again.

At 2 weeks of age I meet with her consultant - she was recovering from surgery but she was "failing to thrive" , why they didn't know they were running every test under the sun to get an answer.

A nutrition drip was keeping you alive, you were only getting 0.6ml per hour of Mummy's milk, how does one even measure that out!

You developed an infection called NEC, while most recover not all do and we again held our breath not knowing what the next hour would bring. You feeds were stopped and you were on an array of antibiotics.

Ive sat by and watched a ventilator breath for you, Ive seen you so still due to morphine, Ive seen you graduate to CPAP and then finally to completely breathing on your own.

I waited 11 long days just to hold you in my arms, the longest 11 days of mine and Daddy's lives, I waited 21 days to change a nappy and 25 days to put clothes on you for the first time.

Your first bath was in a steel bowl inside your isolette at 8 weeks old. The following week I bathed you for the very first time in a baby bath and I was crying tears of joy, there were days when I didn't think Id ever get to bath you as a living child.

You spent your first Christmas and New years in hospital, while I should have still had you in the safety of my womb. You made it through to 2009 and this gave us hope, such small things bought us hope.

You reached the 1kg club on the 27th of December, must have been the Christmas Feast original.

At 6 weeks we were finally told of your diagnosis. "Born without a Pancreas and Neonatal Diabetes", your prognosis was not good. It was advised that we go home and get a video camera and make as many memories as possible. There were only 13 other children in the world like you and the survival rate was only 31%. We started making memories, everyday I woke up and asked myself would this be the last day. I didn't want you to be in pain so I was forever checking to see if you were in pain. They expected that you would pass away within a few weeks.

I searched the net for story's of success I desperately needed some hope. I managed to find another family in NZ who's son was born with the same condition with the same prognosis and he was now 11 months old and that gave me hope, then I would read of the 11 that didn't make it and again I held my breath.

I sat beside you for 16 long weeks, Ive watched your struggle, Ive watched you so still but as the weeks passed I just fell more in love you as the days went on. I begged God not to send you to me only to take you away again, as you approached 8 weeks your vital signs were improving, we were closely watching you for liver failure as we knew that would be the start of the finish for you, but as the days went on and the weeks passed it looked like your Liver had been spared any serious damage.

We have watched you being poked and prodded day in and day out.

Finally at 10 weeks it looked like you had turned a corner and you have flourished, you jumped every hurdle, road block, detour and speed hump.

You came out of the isolette the week after your Due date, finally after 11 weeks!, you lost all your drips, tubes and monitors - Well all except one.

At 12 weeks of age we put you on a insulin pump and you are thriving my girl, your diabetes has the best control it ever has.

Your daddy loves you to the moon and back, he sits in with you at night and just looks at you in awe

We started breastfeeding at 12 weeks as well and it was great to reach that milestone, its one I wasnt sure we would ever reach with you.

I think you have surprised a lot of the Dr's and Nurses, you have taught me some of the greatest lessons in life and I'm glad I have been able to travel this road with you, our family has been through so many emotions and somehow we have managed to hold it together for the most part.

Ive met some truly inspirational people on this journey, Ive formed close bonds with people I would never have met otherwise.

You have so many "Auntys" out there that too have ridden this roller coaster with us, they have picked us up when I thought all hope was lost, they are my NICU angels. They have hoped and prayed and urged the higher being not to take you back and it worked.

At 13 weeks you were to undergo another surgery, this time it was to reconnect your bowel, you are yet to have a "dirty nappy" so I was dancing with joy after your surgery when you did your first poo. You only needed to be ventilated for 2 days after your surgery and you seemed to be making a good recovery, however late on day 2 after your operation you started developing Stomach distention, the Dr's were not too concerned at that point. That night it got alot worse and you had alot of gas buildup, you had xray after xray and the next morning the Drs called us in to tell us that you had NEC, I couldnt believe it, you had got NEC a second time!!!

The battle was on again, but you battled through and finally after 7 days of Antibiotics you were ready to start feeds again, it was a slow process starting off at 3ml/s every 2 hours, but after 5 days you were back up to full feeds

A few days after your operation, mummy arrived in the morning to see you and you were surrounded by Cardiologists and cardiac surgeons and an Echo had revealed that you still had a large PDA and they were worried it was causing your heartrate to be low, but due to your tiny size the only way to repair it was via open heart surgery. You had just been under a general and you were currently battling another NEC infection so it was decided to watch it and repair at a later date, hopefully when you are bigger and stronger and it can be done in a less invasive and risky way.

So after 16 weeks, 112 days we got to walk out of the hospital with you in our arms, it was the longest 16 weeks of my life that saw us all go through many many emotions, we have met some absolutely inspiring people along the way

Sarah - You are my miracle, my darling angel how you came through I have no idea, but we have now had you home for 2 weeks, finally we can stop holding our breath and jumping when the phone rings in the middle of the night.

Next Sunday on Easter day you are being Baptised, so are your 2 cousins who were born on the 27th Jan, you are 2 months older than them and although still so small you are definetly a little miracle, it will be a very special day indeed and one we never thought would come.

Love you my "sarebear" to the end of the world and back again

Love Mummy

We should be home but the rollercoaster continues

2009-03-14T15:55:00.003+11:00

Well last Update we were home and hosed, infact we did have Sarah home, all for one day.

We then returned to hospital for a Simple Surgery, well I guess with Sarah you can never really say anything has been simple thus far.

This time Sarah actually went down to theatre and atleast wasnt operated on at the bedside, watching her go through the doors to theatre and being left holding her bunny rug was really hard, through this whole journey Ive been able to hold her hand so that she knows mummy is right here, but this time I couldn't and my child's life was literally in someone else's hands, reminded me of the day she was born, it was totally out of my control and up to the surgeons and Sarah herself.

So Surgery started at 830am and I was told it would take 1.5-2 hours, 930 came and went, so did 10am and then 10.30am. I was expecting to see the surgeon any minute, but then it was 11am and no news. Finally at 11.30 I got the news that all went well and she was on her way back to NICU.

I followed her up there and once back on NICU, a wave of emotion hit me, it didn't even look like Sarah, I had left her all wide eyed and now she was ventilated and sedated on painkillers. It was a pretty emotional day all round but she had made it through yet another surgery and her little body was getting some well deserved rest.

A friend at the hospital who's little boy is also in NICU kept me company most of the day, she came in to see Sarah later that night and commented on how "good" she looked, so I took that as a good sign as she herself has seen her little boy through a few surgeries.

Wednesday and Thursday were probably the toughest days - the tried quiet a few times throughout the day to take her off the ventilator but she wasnt able to breath on her own, so I continued just sitting there and watching. On Thursday they started turning down her Morphine infusion and she started waking a little, it was so good to see her eyes open again!

Friday morning I called early to see how she had gone overnight and was relieved when they said they had extubated (taken her off the ventilator) at 6am, I was so relieved - she was breathing all on her own again!!!

I spent the day with her not leaving her side much that day. Michael stays at the hospital on weekends to give me a break and so I can spend a few days with the other kids at home, and I was emotionally drained, in a week Id gone from having her home to seeing her back on a ventilator and a machine breathing for her.

When I left on Friday night I had spoken to the consultant on the ward. We were heading for home and Sarah had been waiting for about 2 weeks for a repeat echo, a previous echo had shown that her PDA in her heart was still open and I didnt want that causing any delays in getting home. The consultant assured me that while yes her PDA is still open it is not causing her any issues and was "insignificant and not an issue"

She also passed a bowel motion on Friday afternoon and I was so excited, after 98 days I had finally changed her very first dirty nappy.

Overnight Friday night and Saturday morning her tummy began to distend, this was our one fear, she had xray after xray and alot of bloods taken. Friday night when the distention was not looking good they started treating her for NEC and I was thinking "here we go again", she was started on 3 Anti-biotics and they were aspirating her stomach contents every hour, this was helping, along with her Antibiotics to bring down the distention. The surgeons were called to review her and were not convinced that she did indeed have NEC but the consultant were not convinced she didnt have NEC so she was to remain Nil By Mouth for another 7 days and Anti-biotics to continue.

By Saturday night she was quite unsettled and very very hungry and the nurse gave her a dose of Morphine and she slept the whole night.

The next week was to go so slowly, sitting there watching her suck the life off that dummy and by Wednesday she had almost given up ever getting fed and it was again an emotional week to go through.

On the Tuesday however I arrived at the hospital around 8am to find her surrounded by heart surgeons, she had some episodes of Bradycardia - the same as she did following her first surgery. The consultant that had come on Tuesday was of the opinion that the PDA was the cause and called the cardiologists in view of doing surgery. I spoke with the cardiac team and they advised that due to her size the PDA could not be done as closed heart surgery.

Everything had happened too quickly, Friday night her PDA was "insignificant and not an issue" and almost overnight without her "clinical state" deteriorating we were talking about open heart surgery. To say the least my head was spinning. While all this was happening the surgeons had come in to say yes lets start feeds, only for the Neonates consultant come in saying - No feeds, Sarah has NEC.

I was so confused with different Dr's saying different things and bu 1030am that day I was a ball of tears.

Already having one child with a heart condition I guess I know more than the average bear, if Sarah's PDA was an issue she would be having regular desats, she would be lethargic and having probs with weight gain, but she had none of these signs, infact she was sating at 99% most of the weekend. Sarah has had that PDA since she was born, there had been plenty of opportunity to act on it.

So I asked to speak with the care manager, I felt as if everyone was being reactive instead of proactive and I was not prepared for Sarah to undergo another surgery so soon, certainly not a surgery that is no medically indicated and a life or death situation. So I said well you can send the heart surgeons down here all you like but I will not be signing any consent forms.

I had a chat with the social worker and then finally at 630 that night the Neonates consultant came to speak with me. After an hours of discussion it was agreed that the PDA closer was not something that needed to be done urgently and we would re-assess in 3 months, if it is still open then I will consider the operation, but she will be bigger and stronger and able to have it done as closed heart surgery.

I was eager for Friday's ward round, Friday was scheduled feed day!!!!! There was also change of consultant so I wanted to make sure I was there and there was no more change of plans. I was so relieved when he said lets start back on EBM with creon and start as 2 hourly feeds. They were to start at such a small rate - only 3ml/2 hourly, but it was a start, or so I thought so.

Dietican then came and said Sarah cant have EBM she cant digest it, I explained that for the last 15 weeks she has been having EBM with creon supplements to aid digestion and she has thrived, I mean obviousiy she has grown from 735 grams. She said she would talk to her boss and get back to us. Well at 430 she still hadnt come back to us. The afternoon ward round was on by this stage and the consultant said lets just do what they want over the weekend, we were then told we couldnt get the formula until monday, I was furious - how could this be happening, Sarah has been on no feeds for 10 days, surely this could have been sorted in that time so when the go ahead to feed was given she could start feeding immediately. The consultant then said I dont care where you get it from just get it and get it now!

So Last night I came home for the weekend and Michael has gone in. What a week it has been.

Feeds are going well. She is now on 9mls every 2 hours and hopefully once she shows she is tolerating they will increase the feeds at a much quicker rate than 3mls every 12 hours.

We are aiming for home next weekend, what a day that will be.

I am meeting with her consultant on Tuesday and will be making it clear that I would like her home next weekend and hopfully he will work with me to ensure that happens.

Well I shall sign off here, I really should update this more often so its not so long to read in one hit!

Karina and Family

Sarah's Final Surgery and Discharge Home

2009-02-24T21:44:00.000+11:00

Well finally after almost 13 weeks we are on the way out the door.

I cant believe where this journey has taken us, its seen good days and bad days, emotional turmoil, joys, hope, tears and tantrums and huge signs of relief. Its seen so many tears - Tears of hope and joy and tears of sadness.

13 Weeks ago I went to the hospital for a routine CTG less than 30mins later I was being knocked out and Sarah was going to begin her fight for life, and my god fight she did.

Everytime a Doctor said "its not looking good" she heard them and proved them wrong, she wasn't going to give in that easily.

First it was the first 72 hours are critical - then 48 hours after birth, her Dr came to my room, her face full of fear as she delivered the news that my girl was critically sick and a specialist team had been called to come and retrieve her, she needed specialist care above what they could give her.

Then we meet with the Dr's at the RCH and they had that same look. Don't get our hopes up you say, well Miss Sarah heard you and she has proven you wrong.

At just 735grams you operated on her, found the issue with her bowels "Malrotation of the bowel" Ive learnt a lot of medical terminology on this journey and I hope never ever to hear it again.

At 2 weeks of age I meet with her consultant - she was recovering from surgery but she was "failing to thrive" , why they didn't know they were running every test under the sun to get an answer.

A nutrition drip was keeping you alive, you were only getting 0.6ml per hour of Mummy's milk, how does one even measure that out!

You developed an infection called NEC, while most recover not all do and we again held our breath not knowing what the next hour would bring. You feeds were stopped and you were on an array of antibiotics.

Ive sat by and watched a ventilator breath for you, Ive seen you so still due to morphine, Ive seen you graduate to CPAP and then finally to completely breathing on your own.

I waited 11 long days just to hold you in my arms, the longest 11 days of mine and Daddy's lives, I waited 21 days to change a nappy and 25 days to put clothes on you for the first time.

Your first bath was in a steel bowl inside your isolette at 8 weeks old. The following week I bathed you for the very first time in a baby bath and I was crying tears of joy, there were days when I didn't think Id ever get to bath you as a living child.

You spent your first Christmas and New years in hospital, while I should have still had you in the safety of my womb. You made it through to 2009 and this gave us hope, such small things bought us hope.

You reached the 1kg club on the 27th of December, must have been the Christmas Feast original.gif

At 6 weeks we were finally told of your diagnosis. "Born without a Pancreas and Neonatal Diabetes", your prognosis was not good. It was advised that we go home and get a video camera and make as many memories as possible. There were only 13 other children in the world like you and the survival rate was only 31%. We started making memories, everyday I woke up and asked myself would this be the last day. I didn't want you to be in pain so I was forever checking to see if you were in pain. They expected that you would pass away within a few weeks.

I searched the net for story's of success I desperately needed some hope. I managed to find another family in NZ who's son was born with the same condition with the same prognosis and he was now 11 months old and that gave me hope, then I would read of the 11 that didn't make it and again I held my breath.

Ive sat beside you for 13 weeks, Ive watched your struggle, Ive watched you so still but as the weeks passed I just fell more in love you as the days went on. I begged God not to send you to me only to take you away again, as you approached 8 weeks your vital signs were improving, we were closely watching you for liver failure as we knew that would be the start of the finish for you, but as the days went on and the weeks passed it looked like your Liver had been spared any serious damage.

We have watched you being poked and prodded day in and day out.

Finally at 10 weeks it looked like you had turned a corner and in the last 2.5 weeks you have flourished, you jumped every hurdle, road block, detour and speed hump.

You came out of the isolette the week after your Due date, finally after 11 weeks!, you lost all your drips, tubes and monitors - Well all except one.

A week ago we put you on a insulin pump and you are thriving my girl, your diabetes has the best control it ever has.

Your daddy loves you to the moon and back, he sits in with you at night and just looks at you in awe

Over the weekend I was able to start breastfeeding you and it is the most wonderful feeling, I didn't know if I would ever been able to do that for you.

I think you have surprised a lot of the Dr's and Nurses, you have taught me some of the greatest lessons in life and I'm glad I have been able to travel this road with you, our family has been through so many emotions and somehow we have managed to hold it together for the most part.

Ive met some truly inspirational people on this journey, Ive formed close bonds with people I would never have met otherwise.

You have so many "Auntys" out there that too have ridden this roller coaster with us, they have picked us up when I thought all hope was lost, they are my NICU angels. They have hoped and prayed and urged the higher being not to take you back and it worked.

Tomorrow you are going for a CT Contrast study just to check that your bowel is all good to be reconnected, they are 99% sure it will be.

On Friday you return to surgery. This time you are going to go to theater!, last time you were so small, fragile and sick that theater came to you and they operated at the bedside!

Once your surgery is over with you are going to bolt for the door! Today they organised Hospital in the home, they contacted our GP and MCHN to say you should be going home by next Friday.

Sarah - You are my miracle, my darling angel how you came through I have no idea, but within 2 weeks you are going to be at home, finally we are going to bring you home and we can stop holding our breath and jumping when the phone rings in the middle of the night.

Love you my "sarebear" to the end of the world and back again

Love Mummy

12 weeks old

2009-02-21T23:03:00.002+11:00

I dont know where the last 12 weeks has gone.

My daughter continues to amaze me day in and day out. Ive just done a montage of her journey.

It dawned on me today that Im going to bring my daughter home in a car seat, I am going to walk out of the neonatal unit with my precious girl in a pram and drive her home and put her in her cradle that has been set up since October.

Here is the montage.

From the bottom of my heart I thank everyone for your support, you all picked me up when I had no hope left, as I sat there watching my child slip away, but she was determined to stay here for the time being and for that I am eternally grateful

Make a Smilebox slideshow

Almost 12 weeks old and Insulin Pump fitted

2009-02-18T08:26:00.000+11:00

I was talking to a friend last night, she also had a little premmie, her DD was born at just 26 weeks and weighed a tiny 568grams.

We were thinking back to when our angels were only hours old and how very fragile they were, how absolutely tiny there where.

I was initially disappointed that I had to be knocked out for the C-section, it wasnt what I had planned and I really wanted to see Sarah being born, I was going to get the screen lowered as she was pulled out, I was going to get photos of her being born.

I dont think that I have written this detail before but I am now glad that I wasnt awake for the c-section. Once sarah was pulled out she needed to be "bagged" for 3 mins, it doesnt seem like long but had I had an epidural 3 mins watching them trying to get my daughter to breath would have felt like a eternity and it would have broken my heart. Now I know that Dr's have a duty of care but I do wonder at what point do they stop and say this is not working? Do they look at each baby and say yep this one will make it? or this one just isnt strong enough. I dont wish any mother to ever witness the OB's and Paed bagging or doing resus on there newborn, tiny incy wincy child.

Sarah is almost 12 weeks old, its unbelievable how far she has come and the hurdles that she just kept jumping and jumping, its like she has been on a obstacle course jumping this and weaving this!

On Monday morning they installed her Insulin pump after some teething problems the first day we seem to have it working. Her levels were down between 5-7 last night for about 8 hours but climbed back up to 20 about 4am this morning, so they have made an adjustment to her insulin base rate for the next four hours and we will see if that helps her.

The surgeons have been around as her Stoma has prolapsed which means that more of the bowel has come out so surgery has been booked for ASAP possibly Friday or Monday next week.

I cant wait to change a dirty nappy! Now that is something that I thought Id never say, but Im excited. Sarah has never had a dirty nappy in her life so far, and its amazing what things you get excited over on this journey through NICU. I remember changing her nappy for the first time when she was about a week old, something so simple yet to me was such an exciting thing, just one of those things that you take for granted with a full term baby.

She is also taking oral feeds really well, last night had 5 oral feeds in a row, which is quite alot for a baby her size and she is on 2 hourly feeds so does tire more quickly. Hopefully today we are going to 3 hourly feeds which will be better for Sarah!

Well am signing off for now, am staying at Ronald MCDonald house this week, which is great to only be across the road from my girl!

Becoming a parent in the NICU

2009-02-02T16:02:00.002+11:00

Becoming a parent to a baby in NICU is so very different to becoming a parent in the comfort and privacy of my own home, I find it difficult to act and feel like a parent when so much seperates me from my newborn.

From the very start I wanted to touch her, to stroke her face and her skin, but I was afraid of pulling something out, I felt like I had to wait for instructions from the curses. I so desperatly want to be involved. I pumped milk from day 1, have seen her every day, touched her and held her, Ive read stories and sang lullaby's, but still there is that empty feeling when every night I go home to a babyless house, there are flowers and balloons and cards and gifts from friends and family but no baby to wake up several times a night, the only thing I awake to is a breastpump..

Suddenly I was no longer pregnant and yet I am far from being a mummy again, where did all of this fit into the glowing dream of motherhood, where did I fit into it? What can I do for my baby but look at her tiny body, covered in wires and tubes and tell her I love her and Im sorry I couldnt bake her longer.

Sarah is doing remarkably well, yet day in day out I watch over this child, always frightened, always waiting for something to go wrong, wondering what the next day will bring, always just one step ahead of exhaustion, hoping today will be the day where I feel like her mother, wanting to be able to do more for Sarah, wanting to feel like I am worth more in her life than a couple of bottles of breastmilk.

At night I go to sleep and dream I am pregnant and wake up full of hope - and then remember I am not, I lay in bed at night wondering if she is settled and peaceful, is she calm or is she agitated, does she need her mummy or daddy and instead of peeping in her cradle which is all set up next to my bed, I have to call a nurse and ask.

Each evening I blow my child a kiss through her plastic house and walk away, every nerve in my body is screaming at me that this is wrong, this isnt what it should be like, every fibre in my body wants to hold my child and never let go, and yet night after night I leave.

I just look to the light and hope that one day that I do get you pick you up and never let go comes around soon.

My baby has lost weight

2009-02-01T21:09:00.002+11:00

Well last Thursday we made some progress in getting Sarah of her TPN an Lipid infusions, was a big step as until now these had prevented sarah from suffering from Malnutrition.

She is weighed every 2 days.

Monday she weighed in at 1900 grams, we thought we were only about 2 days off the magical 2kg mark

Wednesday she had a loss and dropped to 1844grams

Friday she only had gained 4 grams taking her to 1848

Today was weigh day and I was really hoping for a big gain. However its another loss, so she is now only 1832grams

The cant fortify her milk due to her Stomas, all they can do is up her feeds to be 200mls per kilo, so about 15mls per hour. Currently she is on 12mls per hour

Her sugars are still fairly erratic, they are better than what they were though so that is a positive.

When will the journey end

2009-02-01T01:00:00.002+11:00

Well here goes, I need to write down my feelings somewhere.

I am tired, exhausted, anxious, emotional, teary, angry all in one day.

I cant sleep, its 1am in the morning and I cant sleep, it will probably be 3am before I nod off and then Ill be up at 7am. Thats 4 hours sleep, how does one survive on 4 hours sleep day in day out.

I know that Sarah is in the best place right now, but my heart is aching, its aching to be a family under the one roof. Some weeks things seem to be the same in regards to her progress, weeks go by and it appears that she is no worse, but no closer to coming home. I need her home.

The hospital is depressing, its full of sick children, every corner I turn lately I see a parent crying or a child suffering and I know that what to expect in a hospital but after weeks seeing it, its really beginning to effect me.

Birth is not meant to be like this, you are meant to fall pregnant, sail through pregnancy, have that glowing look, wear maternity clothes, have people guess how far you are along by the size of your belly, feel your baby doing somersaults inside you. You are meant to feel the agony of contractions and your baby being born into this world, you then are meant to rest in hospital for a few days, feeding your baby and getting to know them before coming home. That is how pregnancy and birth should be and its not how it was for me at all.

I feel as if none of that happened to me, I barely felt any movememnts, not like with the other kids, I was barely wearing maternity clothes, I just looked like I had put on some weight, not that I was cooking a precous baby in my tummy. The end of my pregnancy was full of stress and tests, tests and more tests, what ever happened to enjoying pregnancy.

I knew I was going to have a c-section delivery and I was fine with that, but I didnt even get the chance to discuss my birth plan with my OB, I thought I had plenty of time. I really wanted the screen lowered so that I could have seen my child being born, I missed that the last 2 times and it was something I really wanted to happen, instead I was knocked out not knowing what I was going to awake to, I woke in agony, the pain was indescribable, worse than I had ever felt in my life.

I dont feel like Im a strong person, I feel like I am crumbling, inside I feel like crawling into a hole and not coming out till this journey is over, realistically I know I cant do that but boy do I want to.

So when will this end, or will this ever end, when I think I can see some light at the end, that light gets dimmer and dimmer.

I want my own health back, I imagine because I am barely sleeping that my own energy stocks are depleted, so I seem to forever have a cough, or a rattly chest, or a sore throat, its always something!

Today I was cleaning the bedroom, I twisted the wrong way and felt a tear in my abdo, now I have this stabbing pain right behind my scar. Normally Id be back to playing netabll and physically feeling fantastic, right now I feel really fragile.

Anyway thats enough babble for tonight, might sign off and try and get some sleep

Dear Sarah

2009-01-30T21:33:00.002+11:00

Dear Sarah,

Today you are 9 weeks old, that is 63 days in hospital.

When I think how much you have endured it breaks my heart, why oh why did this have to happen to you, I have asked this question over and over and over and I still don't have an answer I'm afraid.

Shit when I look back over the last 9 weeks lets see what you have faced

* You entered the world at just 735grams
* Day 2 you were ventilated, placed on Morphene and transferred to the Childrens Hospital
* Day 6 - Your bowel was malrotated and you were operated on
* week 3 you got NEC and your feeds were stopped
* You spent your first Christmas in hospital
* At 6 weeks old you were diagnosed with "No Pancreas" and "Neonatal Diabetes"
* We were told that your prognosis wasnt good and to prepare to say goodbye over the coming weeks
* You were not ready to give up so you proved them wrong and kept on going and going

Now you are 9 weeks old, you now weigh 1848 grams and anyday now will come out of your humidicrib, you are also about to have another operation to put your bowel back into one peice.

You are one amazing little girl, through everything you have held on, some days its been touch and go and we have been prepared to say goodbye. You are definetly a gift sent from heaven and there is som gaurdian angel up there watching over you, I dont know who it is but they are one special person for letting you stay with us

Love you to the moon and back again

6 weeks and counting

2009-01-12T12:58:00.002+11:00

Sorry its been a few days between updates.

The Diagnosis almost a week ago really hit us for six as a family. I remember driving home from the hospital that day, the thought of loosing my daughter had me in tears the whole way home. I called my Mum and tried not to cry but I simply couldnt stop the tears from flowing.

I knew it was bad news as soon as we got to the hospital and we were directed to the "quiet room", I didnt cry in the meeting, but as soon as the Dr and nurse left the room I just broke down, and as always Michael was there to tell me that somehow we will get through this together as a family.

The future for Sarah is so unclear, I wish to wake up tomorrow and this has all been a dream, but I know that isn't going to happen. Some days are easier than others, some days I am just an emotional wreck that just keeps on putting on foot in front of another just to get through the day.

I saw my OB today for my 6 week postpartum check, it was such a sad day for me, usually I am attending this appointment with a baby in tow, sitting in the waiting room with my baby and so it was fairly emotional, then came the news that as my bleeding still hasnt stopped that I need to go back to theatre for a curette to clean out my uterus, good thing is he can put a mirena in at the same time. So its booked for Friday, I am sure that he thought I was abit crazy when I said I cant possibly go back to the Mercy on Friday to have it done, I just cant go back there right now, its where life threw me on this road and I just cant go there, not yet. Quite possibly a very irrational thought, and its something I will work through with time, but right now I just cant.

Had my mum and sister down on the weekend and that was great and they were able to hold Sarah for the first time so that was pretty special.

Ive had alot of people ask how is Sarah going and the short answer is she s hanging in there, there really is no change in her conidton, she is still only on minimal feeds, still on TPN and they continue to chase her sugar levels.

Medically speaking they are doing everything they can for Sarah, they will manage her symptoms and keep as as comfortable as possible, right now she is not showing any tell tale signs of Liver damage and her LFT's are still within a normal range, she was looking slightly yellow yesterday and this is being monitored, it cant be too bad though as she is not under lights yet.

Jessica must have overheard Michael and I talking though cause she came into my room on Thursday night and said "Mummy is Sarah going to die" I didnt know what to say so I just said Im not sure, I just dont know how much to tell the kids and even how to tell them so for now I am avoiding the subject.

Its a hard road thats for sure, its a road that I wish we were never on and a road I wouldnt wish on anyone at all.

Sarah darling - Mummy and Daddy love you very much and hope and pray that you prove everyone wrong and go on to live a happy and healthy life with us

The Diagnosis

2009-01-07T09:53:00.002+11:00

Well where do I start.

Its been a very emotional day for all of us.

As you know this pregnancy and birth has been a rollercoaster ride and a half!

We spoke with her consultant in length today.

They have confirmed that Sarah has no pancreas and she also has Neonatal Diabetes.

There is only a handful of people that have this condition, Sarah is as far as they are aware the 9th person to be born, only 3 are still living.

The issue for Sarah lies in a few places the main one being with her liver. Of the existing Children know to have this condition the 6 children that had liver damage all passed away within the first few months and the neonatalogist has suggested this will be the likely outcome for Sarah and for us to prepare for that.

As you can imagine this is all still sinking in and we are yet to talk to the other children about it as we are just not sure how and when to discuss.

For the moment we are thankful for the almost 6 weeks we have had with Sarah and will treasure what time she has left however long that may be.

I have managed to contact one of the other living Children, a little boy that lives in New Zealand. Drs had the same concern for this little boy with his Liver, thankfully his liver turned out not to be damaged and he is now 9 months old and thriving.

As you can imagine its all still sinking in, I am meeting with the Endo Team today to discuss things in more detail.

Reflections

2009-01-03T23:45:00.003+11:00

Rule One - Never read back over your own blog entries, its plain scary!

This is the first time I have ever written a blog, and its mostly my random thoughts, how I am feeling in the moment that I write.

During this journey, so many people have said how strong we are as a family, but I can tell you behind the words I have struggled at times.

The last 4 weeks of my pregnancy I was an emotional mess, my poor husband he must have thought what happened to my happy go lucky, go with the flow wife. My dear friend in Sydney, not sure how she heard my though the snuffles some days.

I worked up until 3 weeks before Sarah arrived, the day of my Amnio test was the last day I was there, I had work that was unfinished and I was still in the middle of training my Mat Leave replacement - poor girl

Then the day of the 27th of November I actually wrote an entry in here that I had a feeling of dread, I have no idea really what is was but it had me upset and emotional and searching for answers, it was like I could feel my child slipping away, there were no physical signs, it was just a "feeling" Mothers intuition maybe.

I spoke indepth that night to a few friends online, told them that I had this utter feeling of dread, was I going crazy, the reassured me I wasnt.

The next day I woke early still with that uneasy feeling, my child was slipping away from me, I spoke to a few people that morning and that feeling of dread got less and less.

I think up until this point I was in denial to a point, maybe I didnt comprehend just how small and sick this baby was, Id had a small baby before, my 3rd child was just on 2kgs at birth and he was fine, so was telling myself it will just be like last time, Drs/OB's always prepare you for the worst. This baby would have a growth spurt and everything would be fine, id make it to term you wait and see.

That feeling that something was wrong was gone, like a weight lifted from my shoulders, I casually said to my friend well I better run, might go to the hospital for the CTG early today, its Friday and its always a madhouse up there on Fridays.

What was to unfold I never expected, it came out of left field and hit me for 6! You would think by reading my blog, surely you could see it coming but I couldn't. Had it happened a week earlier, or 3 weeks earlier when I had that gush of fluid I could have seen it coming.

I had been taking belly shots the whole way through this pregnancy, had I known I would have taken a final one that morning, hence the last one was taken 2 weeks prior to Sarah's arrival.

I was even relaxed when I got to the hospital, there was a midwife there that use to see me all the time for my CTG's, her name was Renee and she was so lovely, She would call Sarah the pesky baby!, as she was so small it was hard to get a decent trace, she would keep on moving the bugger! Only Renee didnt work on Fridays, pity about that as we had some weird conversations as she sat there and traced buggalugs.

I loved hearing my babys heart beat away it was so soothing. As the midife was trying to pick it up on that day I wasnt even that concerned when she was having trouble, then she left and came back with another midwife, she asked me again where do we normally pick it up? She had a feel around to see if she could see what position bubs was in, she had a go and no luck either, she did pick it up briefly but I think she picked the placenta up and not the baby. She too left the room not saying much, at this stage I became worried and that feeling of dread from the night before returned. I reached for my phone and sent my dear friend in Sydney a SMS "at hospital having trace done, they cant pick up the heart". Even though I had that feeling of holy shit what is happening, if only Renee was here, I as still calm expecting another midife to come and pick it up. Instead they came back and said you are due for a bio-physical scan today so we will do that first and check where bub is laying.

I was taken into a ultrasound room with a Dr, why wernt the midwives doing like they normally did, this thought didnt actually cross my mind at the time, I just hopped up and went along with it. I could hear them whispering, it was kinda like I as watching a movie, it wasnt me actually laying there, surely this was all a dream. Then the questions "When was the last time you felt baby moving" I had to think, I didnt really know, kicks had just become part of daily life, crap need to think "Yes Im sure I felt movement this morning, maybe last night though.

I should have grabbed for my phone and sent DH a message telling him to hurry and get to the hospital but I thought oh its all ok, they are just going to monitor things for abit longer today.

More whispering, more questions. Then she tells me can I move on my side abit, she is pointing at the heart beat on the screen and saying oh its coming up abit now. Then she tries paging my OB, she wasnt really talking to me, it was more conversation between her and the midwife. Finally she comes and says that your baby isnt doing to well, her heart rate is awefully slow and we cant detect any flo to your baby. I as shitting myself, oh God please dont take this child, not now, Ive come to far, I was trying so hard not to cry, I dont know why Im sure any normal person would have. Alex isnt answering the page, they are not taking the probe of my stomach they are watching the heart rate go down, then it comes up then drops down again. Finally the Dr says I know he is in the hospital I saw him only about an hour ago. She tells the midwife to make sure that heartbeat doesnt get much lower and tells me to lay on my side and not to move. I want to reach for my phone but Im too scared to move. Se leaves the room and returns after a few minutes, behind her is Alex, finally they have found my OB, he will tell them that is all ok, mayb want to admit me for observation.

Alex and the other Dr talked for a few seconds, he then took over the ultrasound. I could see by the look on his face that he wasnt going to say its all ok. He just said very calmly "Your baby isnt doing so well, her heartrate is very low and there is no blood flow to her. We need to deliver this baby now. I could feel the tears welling up. The only thing I managed to say was can I call my husband first, but the reply that came back I wasnt expecting, Im sorry there is no time. He then turned to the other Dr and said we need to call a "Code" "call it as a green".

Ive never been in such an emergency situation - my DD was born by "emergency c-section" but certainly not the emergency this had turned out to be.

On the outside I was trying to be strong, dont cry Karina, if you start you wont be able to stop, but on the inside I was shaking, I didnt want to do this alone. Here I was surrounded by people they were getting IV lines into me, getting my into a gown, asking me if my baby would have a religion, asking me to verify my name, my allergies, what medications Im on, what time did I last eat. I didnt know, oh shit people I had my clexane injection at 11am, now I am going to have to have a general. I didnt want these people around me, rushing around. My OB had disappeared, presumably to getting ready to deliver this baby. Here I as about to have this baby and noone close to me knew of my situation, noone was aware that this baby was to born into a world she was simply not ready for.

As I was being wheeled out I somehow managed to get DH's mobile number to the midwife and she promised she would call for me, how I hoped he was just around the corner and could get there pronto. As it happened he was on the other side of Melbourne and he said it was teh first time in his life that he was scared to walk into a hospital, all he was told was that I had been rushed to theatre and that the babys heartrate was extremely low.

I get into theatre where they confirm due to my injection of clexane they are unable to do a epidural/spinal and it would have to be a general. At this point I was crying, Alex was trying to reassure me but here I as about to have the mask put over my face and I didnt know what I was going to be facing when I woke up, was my baby going to be with us still or was I going to get the "Im sorry we did every thing we could" Would Michael be there, could they contact him.

So off to sleep I went. this must have been about 140pm by now.

I woke at 3pm and OMG the pain was worst than I had remembered from previous c-sections. I as no longer pregnant just in intense pain, they came over and said press this for pain relief, I was pressing for dear life. Then they said you have a stunning baby daughter 735 grams, she is doing well, your husband is with her did you want him, "oh yes I did, the tears were coming again, I think tears of Joy - my baby had held on to meet her mummy.

That night as the longest night so far. I as hooked up to a PCA with a cathetor in and clearly not able to just jump up and go and see my child. I have never prayed so much in my life for her to hold on, please bubby girl hold on till mummy can come and meet you.

She did, she listened to me and she fought through the night. the first time I saw her I was shocked alittle, she was so tiny but she as alive, somehow she managed to just hold on.

How she did Ill never know, She definetly has a guardian angel looking over her, she had so many people praying for her, praying for her to hold on.

5 weeks old

2009-01-02T17:35:00.003+11:00

Dear Sarah,

You are 5 weeks old today.

Each day seems to go so slowly, the day drags on while I sit beside you in your incubator, I just sit there and watch you, I listen to all the machines, I watch the monitor, I stare at you and every day that passes I fall more in love with you each and every day, you are amazing and your strength is also amazing.

You had some visitors today, your Aunty Glenda came to see you. She saw you when you were 2 days old, you were fairly sick, infact she came to the Mercy on the Sunday, your stomach was distended and you were in pain and had been placed on Morphene and ventilated, you wernt moving or responding to touch, you were there resting and gathering all your strength to fight the battle ahead. Today you were so much better, you were opening your eyes, you even turn your head towards me when I talk to you, its a feeling I cant describe to know that you know I am your Mummy and that you are getting to know my voice.

In the last week you have had a few up and down days. You had trouble tolerating your feeds and you had really high fluid losses over 2 days, unfortently all that weight you had put on to get to 1190grams you lost over a 24 hour period, so it dropped you back to 1040grams.

On New years eve you needed another blood transfusion, but boy did it help you, I went to see you on New Years Day and you were so much more alert and so much more pinker!

You get weighed tomorrow again, it will be interesting to see how you go. I can tell you have grown, you are still a tiny little dot but you are starting to fill out. You are taking shape and really starting to look like a "baby"

Some good news came today. Last night your lood sugar levels went up to 21, normally they would increase the amount of insulin they are giving you, but they decided to try something different. You are receiving nutrition through a drip until you are on "full feeds" the nutrition drip has 15% sugar in it, so they have reduced the rate at which you are getting this and your sugar levels have come down to between 5-8 and they have been stable all day, the nurse seemed to think that you were getting too much sugar and that your pancreas may be starting to work and maybe now that you are over a kilo its deeloping abit more.

Well baby girl I am heading off now, Im about to come back in and see you an deliver some more milk!

Love Mummy and Daddy!

Oh I forgot, I am going to add some photos from birth to today so people can see you are growing!

4 Weeks old and now a member of the 1KG Club

2008-12-28T19:38:00.004+11:00

Sorry I havnt updated here in so long.

Wow though what a roller coaster this ride has been.

My last update I think she was about 11 days old. On day 11 we got to hold our miracle of a daughter for the very first time, it was such a special moment for Michael and I. Its hard to comprehend until you have been there, watching your child through a plastic house that is basically keeping them alive, hearing them cry is just aweful and heartbreaking as my motherly instinct is to pick them up and comfort them but I wasnt able to, I wasnt able to comfort my childs cries and that was really hard.

Here is a pic of our first hold of our miracle daughter.

I think it was day 14 in which they started her on feeds, finally she was able to have some EBM, what a relief for me, it was progress and we hadn't had much of that up until now. She started on 0.6ml per hour, not a lot but it was something, then she went to 1ml, then 1.5ml, then 2ml and finally 2.5ml.

On Sunday the 14th December at 16 days old we received a phone call, Sarah wasn't doing to well, her stomach distended, her breathing erratic, temp up. They had stopped her feeds and suspected she had a NEC infection. They did a lumbar puncture on her tiny body and were awaiting the results, in the meantime feeds would be stopped for 10 days and she would need antibiotics and possibly surgery if it got any worse.

By Thursday she had made some improvement so it was decided that she would be able to restart on some feeds. She restarted at 1ml per hour.

By day 21 they decided that besides her sugar levels she was stable and would move to a Special care nursery room of the neonatal ward, well done my girl another step forward, I was getting positive that one day I will be able to bring you home.

Unfortunately the move was short lived and she was moved back into a NICU room about 20 hours later, this happened on Christmas Eve.

Christmas was so hard, everyone around us is celebrating and quite simply its a hard time for us to be happy. We did the best we could to give the older kids the best Christmas but there isn't much for us to celebrate at the moment, this year the Christmas spirit is on hold.

Everyday I feel like I am holding my breath, every hour, every day, every week in NICU I am holding my breath. Each time the phone rings at night I jump and hope its not the hospital asking us to hurry back in.

Sarah has a definete problem with her Pancreas. They have done a scan and it was not seen, our Pancreas has 2 fuctions one that breaks down the fats etc in our food so that our intestines can digest the food, the other as most people knows is responsible for creating Insulin. Presently Sarah's pancreas is not doing either of these fuctions so she is on oral enzymes that breaks down her food so she can digest it and she is also on a Insulin infusion to regulate her blood sugars. The oral enzymes are not a problem, however being dependent on insulin is quite a problem for discharge planning.

Weigh gain is slowly getting there, she now weighs 1044grams, so up 309 grams on her birth weight.

Sarah has had a few visitors which she loves! She had her Aunty Jac yesterday and what good timing as we had her out for a cuddle yesterday so she also got a special hold of the princess. Today another friend came to visit, last time she saw Sarah she was surrounded by Doctors at the Mercy and was in the process of being ventilated so she was looking alot better this time and it was alot less dramatic

I am going to sign off here as this is probably a lot to digest, I thankyou for reading and will update more frequently as I know that there are a few people/family following her progress and thinking of us all.

The First 10 Days

2008-12-09T09:57:00.000+11:00

It all started 10 days ago and wow what a journey so far

I guess it all started at 30 weeks.Bub had been measuring small since 24 weeks so I was on fortnightly growth scans. first it was 3 weeks behind, then 4 weeks, then 6 weeks. So at 30 weeks it was recommended that I have an amnio done. That night I had a gush of fluid and contractions a few hours later, they managed to stop them with nifedipine. Then 2 weeks later sitting at home and again the contractions start, back to hospital start nifidipine again and labour is stalled once again. Have a groeth scan and we are at 728 grams at 32.6 weeks. Discharged from hospital on the Friday night my the OB covering for my OB. See my OB on the Monday, feeling great again. He puts me on daily CTG's and twice dialy Bio-Physical profiles.

Tuesday CTG is great, Wednesday CTG and Scan are perfect, Thursday CTG is again great, Friday is where it all unravelled.

Go for CTG midwife tries for 30 mins to pick up the heartbeat to no avail, suggests that bubs may have moved position and we shoul do the scan first. Taken round to the Peri-Natal Dr to perform the scan, measures AFI and S/D Flows, then starts prodding my tummy trying to get the baby to move, I could see the heart beating so was not at all worried. She then tells the midwife to get my OB on the phone and quickly. She tells me that my baby isnt doing to well and she is going to find my OB as she had seen him in the hospital earlier and to lay on my side and not to move, the midwife then holds the probe on me and watches bubs heartbeat.

OB walks in the room they look at a few things and then he says Im sorry but we have to deliver now, the bloodflow to your baby is absent and she is in distress.

he calls a code green and people coming running in, I want to call my husband but they tell me there is no time and they will call for me.

At 1.15pm I was having a scan, at 1.54pm my tiny daughter is born by c-section.

Welcome to the world Sarah Claire, you weight just 735g, 37cms long and HC 24cms.

You are breathing, you are on CPAP whisked straight up to NICU. You are enjoying you little nest in your incubator.

After a day they change you to low flow oxygen, you are doing fantastic or so I think. The Drs then tell me that your adbo is distended and they are starting you on anti-biotics.

On day 2 mummys dear friend comes to meet you. We go downstairs for a coffee then I take her up to meet you. As I walk over to your corner, there are doctors everywhere, they come over and say we are putting her on the ventilator and morphine, her stomach isnt getting any better and she is starting to feel some pain from it.

later that day they come and see me on the post natal ward, its not good news I can tell. You stomach is becoming more distended and they are worried that you have a bowel obstruction. They tell me they have called the NETS team and they are coming to get you and taking you to the Royal Childrens Hospital. I call your Daddy, tell him to come quickly so he can go with you.

You get settled in, after 4 days they decide they cant wait any longer, your not getting better so they are going to operate.

They operate and find that your first poos are blocking your bowel its very thick and sticky so they clean you out and due to your size they cant re-attach your bowel so you have a stoma, when you reach 2kgs they will be able to reattach it.

You are now 10 days old, you are off your ventilator and back on CPAP and your bowel is now working.

Tonight you are having your very first milk feed and that is very exciting for your mum, you are taking baby steps, small steps to the path to home where you belong.

The Rapid Arrival of Sarah Claire

2008-12-04T23:23:00.001+11:00

When we got our BFP and learnt that we would be adding our 4th and final child we were both very excited. The first trimester travelled along fairly well, i did have some bleeding and morning sickness was really bad between weeks 8-12. I went for my 12 NT scan and the results were excellent. I started feeling fantastic at this stage and loved watching my tunny grow.

At my 19 week scan, I was showing as only 17 weeks, so was told to come back in 2 weeks.

I was put on 2 weekly scans as OB was concerned that this baby was developing growth restriction. By 29 weeks it was oficially diagnosed as IUGR (Inter uterine growth restriction)

I had an amnio done at 30 weeks to rule out infection and chromosomal abnormalities, the results came back all clear. The night of the amnio I had a gush of fluid and starting having contractions a few hours later. Was admitted to hospital where they managed to stop my labour.

2 weeks later started contracting again, so another visit to hospital and luckily they managed to stop things again.

By this stage I was put on daily monitoring having a CTG done every day and a bio-physical profile done every second day.

On Friday the 28th November at 33.6 weeks I went in as per usual for my CTG and bio-bysical profile. I sit on the bed and get ready to hear by baby's heart beating away. After 30 mins the midwife still could not pick up the heartbeat. I was starting to worry at this stage so they said we will go and do the bio-physical profile first ad see what position bubs is in. Normally the midwives do the scan check for a few things to indicate that bubs is still happy.

On this day they took me into the room next to the one I usually go into, there they introduced me to a perinatal Doctor and said she was going to assist with the scan.

I was so happy when I saw my babys heart beating away, but she wasnt moving around, maybe she was just sleeping I thought. The Doctor wasnt saying much, but I could see my baby and see her heart beating away so I figured she would tell me at the end that all was ok. She then said to the midwife we need to get Alex on the phone now (Alex was my OB), she then told me that there was a problem with my baby and had I noticed that she hadnt been moving much. She had been a little quiet in the last day, but I also have an anterior placenta so dont feel all the movements. DH had actually asked me that morning if I wanted him to come for the scan, but I said no its only ever very quick so dont stress and I will ger a pic printed out. Had I knew what was going to unfold I would have told him Id love him to come.

They were still trying to get Alex on the phone, the Dr then told the midwife to hold the probe and make sure that the heartrate stays relatively stable, and she told me to lay on my side and try not to move. A few minitues later she returned with Alex, he was actually in the fete monitoring unit checking up on another patient. He came in and said "Your baby isnt doing to well today and we need to deliver this baby as soon as possible, her heart was bradycardic and she had not moved at all during the scan despite them trying to get her to move. He then explained that there was no flow at all through the Umbilical cord so there was no choice but to deliver now.

I asked if I could call DH, but he said there was no time, but would get one of the midwives to call him for me. They then pressed a emergency button and called a Code Green, people came running in the room and I was quickly changed into a gown and rushed downstairs to theatre.

It all happened so quickly. At 1.15 pm I was having an ultrasound thinking look all is good, the heart is beating away.

At 1.54pm on the 28th November my daughter was born by emergency c-section. She weighed just 735g, length 37cms, HC 24cms.

I woke up in recovery at about 3pm, they went and got DH and they bought me in a photo, she was so so tiny, she was in NICU and they said she was doing well. I kept asking DH are you sure she is ok, have you seen her?

It was then time to go up to the post natal ward, they took me past NICU on the way. I was so grogy and my vision was really blurry and they said can you see her, I said yes but I couldnt, all I could see was bubblewrap, apparetly she was under all the bubble wrap to keep her warm.

It was 18 hours before I was able to see her again, she was in a incubator by now and on CPAP. She seemed to be doing well. On the Sunday she wasnt doing so well so NETS team was called and she was transferred to the neo natal unit at the RCH.

Sarah is 6 days old today, she has already overcome a few obstalces but has been taken off her ventilator and put back on CPAP and seems to be gaining some strength.

Welcome to the world to my wee little daughter Sarah Claire.

A Stressful Day

2008-11-27T18:47:00.004+11:00

What a day, I dont know where to start.

I have the feeling of utter dread, never have I felt this way before.

I went to FMU for a ctg this morning, they were flat chat, a line up out the door. Waiting about 45 mins then got called in. Normally they leave me on for about 40 mins, today they nly had me on for 10 mins, then the midwife came in said yeah looks ok, you can come off now.

Then I called OB to see if he still wanted to see me, nope see you on Monday. I already had an appointment for 920 Monday morning, then this arvo I get a call to say that he has to cancel his mornings appointment so can I come at 12.30 instead, no problems I say.

When I saw him yesterday bubs had only grown 7 grams, yes 7 miserable grams, in a week!!! My baby is starving to death, I know every day counts, but what happens if I go tomorrow and bubs is gone, that is my greatest fear and its taking its toll.

Everyone I speak to keeps asking why have they not got that baby out yet, I have even packed away the cradle, carseat and the clothes that Ive collected already. I know I need to be positive but right now Im just not.

My baby weights only 735 grams and should be nearing 2kgs, Ive been on bedrest for 3 weeks, bed rest is not working!!!!! Ive relaxed, Ive finished up work, DH is doing the cooking and the cleaning, the growth is not going anywhere, infact 3 weeks ago weight was 660g, its now 735 so not even 100g in 3 weeks!!!!!!

I am stressed, worried, emotional and I am trying my hardest to hold it together.

Ok I better sign off, might go and have a nice caling cup of tea, I bet my BP is climbing just through stress

Kat and Buggalugs

Not a good day

2008-11-26T10:40:00.001+11:00

Not a good day

9:42pm November 12th, 2008

I wish I could say that I had a good day, but its just been one of those days.

This pregnancy is taking its toll on me and the family. Im highly emotional. Ive always had the personality of taking on too much and never saying no, I never go against the grain and I hate confrontations.

The day started ok, got kidlets off to school then potted around for abit, about 10am thought Id better get cooper to daycare and go and have some more blood tests done.

Had my Gestational Diabetes test and got tested for my blood clotting times.

Ive been on clexane since the start of this pregnancy, well since 7 weeks. Thats 168 times ive had to inject the clexane, why oh why after 168 would I suddenly have a reaction to it. The Dr ceased it while I was in hospital last week, then I started again and the next day I came up in 4 massive bruises on my forearms. Yesterday another 3 appeared and today another 2 appeared. OB is testing my INR levels to see where they are at so for the time being I am not having the injections. The clexane is meant to be assisting my placenta so hopefully I would have a baby at full term of normal size, well clearly its not working.

What is in store when this precious bundle arrives is anyones guess, right now buggalugs doesnt weight a lot only 660grams. I have a growth scan next Wednesday to see how we are tracking since last scan a fortnight ago, if there isn't much of a gain then OB is talking about immediate delivery.

I feel that this whole birth experience is rapidly becoming out of my control, my body is letting me baby down and there is nothing I can do about it but “rest” and trust me I am praying.

When I fell pregnant with this bub I wanted to enjoy the pregnancy being my last one ever, I havnt enjoyed it much at all, its become very clinical, almost too clinical.

I am going in for fetel monitoring in the morning, will see how that goes. But I will pop in and update tomorrow night

31 weeks and been diagnosed with IUGR

2008-11-26T10:34:00.002+11:00

31 weeks and been diagnosed with IUGR

I had OB appointment tonight. I do have a UTI , so am on Anti-biotics, they should start working in about 24 hours or so.

he measured the fluid and it is still on the 5th cetile which was good news. He did some measurement and growth is fallen a little further down the current growth curve and bubs has put on 28 grams so I was happy to hear that buggalugs is still growing alias at a small rate. I need to go have have a “rescue” shot of the steriods this friday and that will get me through to 33 weeks. They dont normally give the steriods once you have made it to 32 weeks but he might given bubs small size.

I asked about if by some miracle I prove him wrong and manage to carry to 38 weeks if I could deliver at Northpark Private as its definetly my hospital of choice over the Mercy but he said even if I did manage to carry that long that bubs would need a high level of care in a humidicrib for quite a few weeks, he said should I make it through to 34 weeks Im looking at about 6 weeks in hospital and that is even with steriods on board, so I am very glad that I have had the steriods should bubs decide to try and make a unexpected arrival again.

I have to have fetel monitoring tomorrow and thursday at the mercy, then again tues and thurs next week and they will also check fluid levels and doppler flows through the placenta then will see him in two weeks for review.

Am having next growth scan next Wednesday with Michael Bethune at Box Hill and he is actually an OB so he will be able to go through how growth is etc with me during the scan rather than waiting for a report to come through.

As for all the bruises, have to have a blood test tomorrow to check my coagulation levels, he said I might be now having a reaction to the clexane injections

Anyway sorry about the me me me post, I did actually come away from appointment feeling more positive than I have in the last 2 weeks of actually being able to carry this bub to 36-38 weeks

33 Weeks and Counting

2008-11-23T14:17:00.001+11:00

Sorry I havnt been in, have been resting up!

I was discharged from Hospital on Thursday night, I just really wanted to get home to my own bed.

DH had Friday off so that was nice as we had a few things we had to discuss.

I had the scan on Thursday with the specialist, apparently I am a mystery with the fetel medicine people, well at least this baby is!

Results were not as we had hoped and growth has dropped further back. They have been doing a series of scans 2 weeks apart over the last 6 weeks. Weight gain should be 200g a week. Between scan one and two it was 210g, between 2-3 it was 170g and between 3-4 (which was done on thursday) it had dropped off to only 62grams.

My OB has been away this week, so I had another OB covering for him, he suggested that over the weekend that we think about pulling out/delivery on Monday :( Whilst I am sad that the pregnancy is coming to and end and that my body has not done what its naturally meant to do, DH and I have decided that if OB and Paed are of the same opinion on Monday then delivery it shall be.

Weight has been estimated at about 728 grams so not overly great for the gestation, but I have got to a good gestation as far as lung/organ development and that will most definetly play a part on bubs survival.

I have appt with OB at 12.30 tomorrow, at this stage Im not sure what to expect in terms of will bubs require ventilation or CPAP or will lungs hopefully be mature enough given that I have the steriods on board and they have had longer than the 24 hours to take effect.

I should be fine to undergo a spinal for the delivery but if its too risky then I am happy to have a GA, I had a GA with DD and DH went straight with her to SCU so he would do the same thing this time around.

Kat

Welcome

2008-11-23T13:56:00.000+11:00

Welcome to my Blog

Ive decided to use this to have somewhere to put down the journey we are about to embark on.

That journey is adding a 4th Child to our family.

Family means alot to us. We currently have 3 children. I might start by adding a bit about each of them.

Kevin - Kevin was born in Darwin in 1999. He was named after both his Grandfathers. Kevin being my fathers first name who sadly passed away in 1987, and Gary being Michael's Fathers first name. Kevin has been such a delight of a first child, he has thrown many hurdles for us to jump and jump them we have! In June 07 at a routine Drs checkup we discovered that he had a heart condition that until that time had gone undetected, so started the millions of appointments and tests to determine what exactly was wrong and what treatment he needs. After months of waiting lists and red tape it was discovered that he has a ASD and PAPVD and he is currently on the waiting list for open heart surgery to close the hole and correct the drainage problems

Jessica - Jess was born in Brisbane in 2002 and what a delight she is, after her early arrival she has just blossomed. She is a dead ringer of her mum and just as stubborn as me as well! She also has a family name, being named after her Great Grandmother on my dads side. She started primary school this year and is the real social little butterfly!

Cooper - Cooper was born in Melbourne in 2005. About to celebrate his 4th Birthday he really is becoming his own little man. The complete opposite to Kevin, he is the real dare devil! If there is trouble, you will find right in the middle of it!

Then there is myself and Michael, we have just celebrated our 8th wedding anniversary and life is plodding along. After being a defence family for the most part, we are enjoying life as a civilian family these days and life is alot less stressful when your husband is home for the most part of the year!

I shall leave it at that for now, I did have a windows Live Blog, but it seems that is crashing all the time. I have an update to post on this pregnancy today, but when I can will come and copy and paste my other entries, so it might confuse you abit as it will be a tad out of order but will give you abit of a leadup to todays entry