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.
I just wanna say i think you as a person are one of the most admirable people i can think of and also a super tremendous mum... i just finished reading your posts and i think your lil girl would be sooooo proud of her mummy and daddy with everything you are enduring with her and for her.. your son is also a very lucky lil man to have a mum with what she is going through still holding it together for him as well..
My friend went through a very similar situation at 25 weeks also and it was very very very upsetting too experience and i was only a bystander and a shoulder too cry on but i felt like he was my own... his now a gorgeous 18 month old and although still is facing many obstacles he is a true inspiration as im almost certain your daughter is and still is going too become..
I wish nothing but good thoughts and good vibes your and your whole families way you are most deserving of it..
And as for lil heidi i wish the biggest and foremost healthiest vibe for her.... she is amazing and very very strong she is truely a lesson in love and life..
Goodluck with the fututre and your precious gift .....
What a little fighter your precious Heidi is!! I had tears rolling down my cheeks reading about Heidi opening her eyes to daddy's voice and grasping his fingers, just amazing!!!
Keep growing stronger and stronger precious Heidi. Keeping you all in our thoughts and prayers.
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