Just dropping in to let you know that your whole family has been in my thoughts, praying that Heidi has stabilised and that they can get control of the NEC
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
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
Registered User
Bookmarks