Monday, August 16, 2010
Welcome to NICU
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.