Congratulations on a beautiful 100 day milestone and celebration... together as a family! How perfect. I can imagine maintainingyour steam is very hard now when you must just want to bundle your darling daughter up and take her home
Things have been so busy for us I haven't had a chance to jump on & post. Finally made myself stay at home tonight to have a bit of a rest.
DD is still going well. She was officially full-term in corrected age on Sunday (her day 101) so that was a day of very mixed feelings for me. Passing her 'should-have-been' EDD was always going to be tough. The main issue now is her growth. She has plateaued and they're still troubleshooting to try & pin-point why. It could be related to a lot of things most likely a lot of factors mixed in together. Some of it relates to the ileostomy (which kind of short circuits their digestive systems), partially its related to gut sensitivity and trauma from the infection & surgery and malabsorption issues. Also its related to her liver function which is getting much better now. Still trial & error with milks too which is getting eternally frustrating. Today they've asked me to cut out breastfeeds for 3 days to see if it makes any difference to the composition of her output. I dunno. I'm happy to try it but truly don't think one breastfeed a day would be contributing that much. So we'll see. The thing is that until they get her growing consistently there won't be any talk of home.
So still plodding along really - I had hoped to have her home for my birthday which is at the end of this month, but DP & I were talking tonight that I don't think we'll get that gift. Doesn't really matter though, she'll be home when she's ready.
Sorry I missed this update the other day! It must have been hard passing her EDD, what a mix of emotions that must have created for you.
Infinity I have absolutely everything crossed for you that she continues to improve, that her growth starts on the up and up again, and most of all that you get a very special birthday present and get to take your tiny princess home to be with your family at last.
I hope that the Dr's have found a feeding regieme that is suiting Miss H and that you can start BF'ing again very soon, I understand how important that connection you gain through BF'ing really is, and how with a prem and in your case a very early premits significance is heightened.
I will still hold out hope for you that you are able to have her home for your birthday.
Sending lots of chubby vibes your little girls way
Take care and you have done such an amazing job for the last 108 days xxoo
Evening all, thank you all for checking in on us. We've had a good few days and have a bit more certainty to a degree now which is great.
We are back to breastfeeding now which is fabulous. The docs didn't seem to think that cutting out the little bit of breastmilk made much difference at all to her output so they're happy for us to have one breastfeed a day right now which I'm happy with. They said breastmilk alone will speed things up for her in itself - its so easily digestible its just running through very quickly hence it will make her output more watery - but as the head of the unit said to me yesterday, its a nuisance but its not doing her any harm and its more important for my supply and her suck practice to put her on the boob every day. So YAY for boobies! Double YAY for boobies! She got on and sucked away with gusto! Normally we will top her up with a gavage feed of 30-40ml after a b/f just to make sure she's getting enough. After her breastfeed at 2pm this arvo she was bombed so I wrapped her up and we decided not to top her up and just see how long before she demanded again. She didn't wake until her next feed which was 4 hours later so I'm reasonably confident that my supply is good enough and she's feeding efficiently enough to get her fill. Although she was tired too after a bath and her dressing changes too so that may have konked her out too. But its a great feeling knowing she was satisfied for that long.
The little chubba is up to 2650grams and looks so healthy. Its lovely (and somewhat bizarre in many ways) to see her looking so big and getting chubby arms, cheeks & chin. She still has chicken legs LOL!
The big news is that she will be in surgery again next Wednesday (the 20th) when they will reverse the ileostomy and reconnect her bowel. The surgeon & doctors have concluded that her bowel problems were a result of the NEC and her prematurity and that she's had sufficient time to grow and rest her gut, so she will be all back in one piece next week. TBH when the surgeon told me that was her plan I was floored. I was truly expecting to take her home with the stomas, managing it at home for a few months yet, but not so. So, the surgery means another little trip to Intensive Care. She'll be intubated for a few days and need pain relief and lots of TLC. They'll rest her tummy and she wont have milk feeds for up to 5 days. Not sure how to deal with placating a hungry full-term baby who doesn't know why they're not getting any mik but I'm sure the nurses will help us through it. '
It means she won't be home for my birthday (which is the 30th Oct). But knowing that she'll have the surgery next week means she'll probably be home sometime in November. Once she's recovered from the op and goes back to SCN, its really just a matter of getting her suck feeds sorted and confident that she's gaining well and they'll let me take my baby girl home. And that light gets brighter everyday now. Its still going to be a long few weeks but we can do it. I know we can do it. I know she can do it.
Thanks again my friends, you're all absolutely beautiful xox
What a clever, chubby little Heidi!
All good news for the boobie feeds & reversing the stoma, she is absolutely on the path home. As always, you are all in our thoughts.... especially next Wednesday
What a clever, chubby little Heidi!
All good news for the boobie feeds & reversing the stoma, she is absolutely on the path home. As always, you are all in our thoughts.... especially next Wednesday
I haven't posted in this thread yet Infinity, but I have been reading it whenever you post and I just wanted to say how amazing I think she is - she is doing so well and I'm sure she will breeze through this next round of surgery and be home with you all very soon
Yay for boobies.... Hopefully she will continue to chub up with the feeds
It's great news about the surgery - it means she is strong enough for it which is a testament to her. Hopefully the recovery will go quickly and she won't be intubated for too long and back on the liquid gold
Have you been keeping a journal of this experience, apart from what's on here, and plenty of photographs? I apologise if you have mentioned it in here, but a friend of mine was hospitalised a lot as a child and the MIL disapproved of the mother taking photographs as it was no way to remember a child, but it is what makes them who they are... and no doubt Miss H deserves to know one day the emotions etc that were felt (I hope all that makes sense, i'm tired)
xx
for boobies!!!! I am so so happy for you that you are able to put her back to the breast again
I hope that everything goes smoothly with the stoma surgery next week, it will be wonderful to be able to take her home and not have to worry about the extra care required for the stoma site.
2650 grams is an amazing weight!! I can't believe she has nearly put on 2kg!!! She must look huge to you all now
I had been thinking over the last week or so how her weight was going and looking at DD2, and I amazed that they are both about the same size, DD2 was 2520grams last Thursday and she's a chicken legs as well, but she hasn't travelled such a long and difficult journey that Miss Heidi has.
I hope that you are still able to make your birthday special even if it is with an extra BF or extra lovely cuddles
Take care xxoo
Registered User
xxoo
which was 4 hours later
for boobies!!!! I am so so happy for you that you are able to put her back to the breast again
that everything goes smoothly with the stoma surgery next week, it will be wonderful to be able to take her home and not have to worry about the extra care required for the stoma site.
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