Hi everyone, so sorry that its taken me a few days to come back in & update. Thank you all for your thoughts & prayers, it looks like having so many people behind her is helping.
Sal - thank you for sharing with me your friends little boy who also had NEC. Positive stories like that really give us hope. And big woohoo to you guys for taking your little guy Archer home! So amazing.
After a terrible day on Wednesday with Heidi going back on the ventilator etc. she seems to have stabilised which is a really good sign. She is still very unwell but the positive thing is that her condition hasn't worsened and all her xrays have come back clear which means the condition hasn't perforarted her bowel. The doctors seem to think that she may well be out of the really dangerous zone which is encouraging but I am by no means counting my chickens yet. She is still ventilated and on morphine which is keeping her comfortable and of course on some very strong antibiotics to stop the infection progressing. Her little tummy is still quite sore and red, but isn't quite so large as compared to the first few days. Its pretty clear that she's still in some pain, I can see it in her precious face and she's still very guarded when the doctors examine her. She is retaining quite a bit of fluid too which is a normal response to treatment so she's all puffy and stiff. I can't even begin to explain how hard it is to see my baby girl so sick like this, it is just eating away at me every moment. But we have to remain positive and hopeful. It will be another 10-14 days before we know whether she is starting to truly recover and think about any further implications for her. Her treatment will remain the same over the weekend and they'll re-assess early next week to decide what to do about the ventilator & pain relief etc. The NICU doctors are watching her so closely and the paed surgeon has been in to visit her each day just to keep a steady eye on things, so we know she's got everything possible helping her to get better.
She won't recommence feeds until they are satisfied that her gut has recovered - even then it will be done VERY conservatively. Just before she got sick the milk room asked me not to bring anymore EBM in for a while as they had so much there already to use - and now she won't feed for another 2 weeks at least. I'm freezing about 600ml of milk everyday so she had better pull her socks up and get her appetite back.
I'm still unwell and have gone downhill again after everything this week. I got my voice back and thought I was getting better but not so - and to top it all off DS has conjunctivitis and I've woken up with it this morning too. So we've just come back from a trip to the GP to get that all sorted out. I'm banning myself from the hosp for a few days (as much as it breaks me) I need to fully recover, and I'm also contagious right now so I just can't go. The more I run myself into the ground, the less time I get with my baby girl. DP doesn't need to work again until Tues so he is going to be at the hosp with Heidi to help her through this.
Keep sending your thoughts & get well soon vibes Heidi's way - she needs every bit of strength right now. I will keep you posted, I'll have a bit more time at home over the next few days on my self-imposed rest.
You are so strong Infinity - you are such an inspiration hun.
As hard as it is to not go to the hospital to see your princess you know you can always call and ask about her progress, no where near the same as being there in person I understand - but better than nothing. She'll still be on your mind and in your heart hun.
I'm sending all the strength Heidi's way - and tonight I'll light a candle for her too. What a little fighter you've got on your hands ;-)
Oh Infinity! I'm SO glad to hear she has riden the worst of the storm and I have everything crossed for her to continue to get well. I'm thinking of you all a lot
Thanks for the update Infinity - I have been worried about her and you. Hope you are all well again soon and you can spend some more precious time with your little girl.
Aww Hun your an inspiration to me i'm in awe of your strength!, you have beautiful little fighter there beautiful and i know exactly where she gets that from i've been thinking of you and your precious little girl and will keep her in my prayers. Rest up Hun and take care of yourself
Its so lovely coming back in here to such kind-hearted people cheering Heidi on. Thank you all from the bottom of my heart.
DP has been with her each day, morning and going back down at night. Being such the sweetie that he is, he took our video cam down and has filmed her for me to watch. Its not the same as being with her, but makes a big difference. She is improving slowly, bit by bit each time he visits. The doctors are happy with her, she just needs some more time and hopefully we'll be on more solid ground. Even on the morphine she's starting to get a bit more active which is a great sign.
DS & I are getting much better which is good. I'm still banning myself until Tuesday, I'm so paranoid about being infectious and stopping at home for a few days has forced me to rest up a bit instead of running around like a mad woman. I still need to keep busy though...I'm going nuts being away from her.
I forgot to add that the day everything went pear-shaped, we received the professional photos of Heidi that were arranged through the ACOCP. They are just beautiful. I sat and bawled my eyes out looking through them - it was such a tough day and to have those beautiful pics of Heidi when she was well really gave me a lot to stay focussed on.
I have a follow up appt with the Obstetric team at the hospital tomorrow morning - I'm guessing its all going to be routine stuff for me post-natally. We may or may not have any more info as to why Heidi decided to arrive so early - I suspect its going to stay her little secret. Precious little girl.
Glad Heidi is doing better and so sad that this is a bad week for you. It's always harder when you aren't there with them, as it feels like something you CAN do for them in the hospital to try to make up for feeling like you've failed them by not keeping them safe. It's a terrible, irrational guilt that I know Sal carries with her for not keeping our boys in her belly longer. It's not your fault, you body did the best thing for her and got her out so she wouldn't get sick from the infection. It's a crazy, hard thing you are being asked to do, you miss out on so much, the big round belly and all the attention that comes with being that pregnant. You have a new baby, yet when you go out, she's not with you. It's a terribly hard thing to deal with, give yourself time to grieve the lost weeks of your pregnancy, it is a loss even though Heidi is still with you, you have had so much taken away that so many people can't imagine.
You are doing the best job as her Mum as you can do, staying away at the moment is protecting her and just keep remembering that you will take her home and she will be your little baby girl at home with you making up your family of four where she belongs. I am amazed at your strength at every post, Heidi is such a lucky little girl to have two parents who love her as much as you do. Keep going Mum, you can do this!
This is great to hear, little Heidi has been in my thoughts all day so wonderful to hear she is looking at Daddy. Hopefully she is well and truly on the mend now. Infinity how beautiful that you have some lovely photos and video of her... hope that they help you get through until you can see her again.
Been thinking of you and little Miss Heidi as usual
I am glad to hear of some very special little steps forward, opening her eyes awwwwww, we like the small one's, they make a big difference.
It is wonderful to hear that you have received the photos and that they have turned out beautifully, and their timing was impecible.
Sending you some strong get well vibes as well, but it is definitely worth the wait until you are much better before popping in, and the videos must have helped a little bit, it has brough back memories for me that when DD was born and taken to NICU, DH went down with the video and digital camers and bought them both back to me to watch, and it really does make a difference when you can't be there with them.
Take care and sending strength, courage and a bucket load of love to your and your family xxoo
Thinking of you & Heidi. Praying she's stabilised.
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