Tuesday, November 9, 2010

An Update and Thankyou

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.

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