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.
1 comment:
Karina you guys have been through so much and come so far!!! Your so much stronger than you realise and I'm in awe of your family and your little girl and you for keeping it all together.
As you know thinking of you all heaps and praying hard for you all!!
**hugs**
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