So scared.

I am so happy to see that things are going well for you! Congrats on the home arrival of your little miracle. I'm sure you will cherish those baby cuddles all the more :hugs:
 
I know it's late but happy new year hun anf so glad Phoebe is home with you now :hugs:.

I hope you share some at home pictures!
 
She's had a cold so it's been a rough few days. I've had to hold her upright all night as she's not been able to breathe well on her back. Starting to get better now though but I bet she's too used to being held now to want to go back in her crib.

She's a chunky 6lb 6oz now. Still following 25th centile line so happy with that :) can't believe its her due date on Friday. She'll be almost 5 weeks old by then. It's strange to think I should still be pregnant!

Here's a photo of Alex kissing Phoebe, which he does constantly. He also removes his trousers at every opportunity :)
 

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Awww! What a sweet big brother!! (Little boys DO love being pantsless lol.)

I hope P feels better soon, and adjusts well going back into her crib.
 
Phoebe is 4 months old now so thought I would update.

Overall she is doing well. She is 13lbs now :)

She is attending lots of different therapies, Physio, OT, Neurology, etc. We got a name for her condition, HIE and she is Grade 3 which is the most severe. Her initial MRI showed significant damage to the part of her brain that controls movement and co-ordination and hearing. She has also had a significant bleed at the back of her brain where sight is controlled. I'm pretty sure she can see ok but I'm also sure she has hearing loss.

Phoebe's HIE means she is likely to have some form of Cerebral Palsy. At present she is taking her milk herself, which is a bit or a miracle as most HIE III babies don't have a suck/swallow/gag reflex and rely on an NG tube. We tried to get her to breastfeed but it just got her agitated so I have been expressing every feed and giving it to her in bottles. It works well as she has reflux which is controlled brilliantly with Gaviscon alone.

She also has a social smile :) This is the first milestone her Neonatal Consultant was looking out for and she started smiling at 11w, 6w corrected. She has also started cooing a little.

The best bit is at 10w old, 5w corrected, she started rolling from front to back. The girl HATES tummy time :) She still hasn't rolled from back to front but is trying so hard to sit up.

It's going to be a long road and it's looking extremely likely she will be severely disabled but she is alive and I am so thankful for that :)
 

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Thank you for updating, I think of you and Phoebe often. That's a huge mix of news but I'm so glad that she is doing things that they thought she wouldn't and that she is here brightening the world with that beautiful smile <3
 
Thank you for updating, I think of you and Phoebe often. That's a huge mix of news but I'm so glad that she is doing things that they thought she wouldn't and that she is here brightening the world with that beautiful smile <3

Thank you :)

28 weeks now! Wow :) How are you feeling? Sick of people asking how you're feeling I bet :)
 
:haha: not at all. I'm okay mostly, my anxiety gets really bad at times though. How about you? Have you had someone to talk to?
 
Just friends, which I'm happy with. I'm definitely suffering from PTSD and most of my hair has fallen out :cry: but it's getting easier. Phoebe sleeps well but for a long time I couldn't sleep at all because when the house was quiet, I'd lie in my bed going over and over everything thinking about what I should have said and done differently. We have spoken to a lawyer though and starting that ball rolling has helped. I have also repeatedly told myself that I didn't have the benefit of hindsight but the guilt is still enormous. :wacko:

Are you being well looked after?
 
She is so, so gorgeous. Thank you for updating us--I think about you all often.
 
Thank you for updating Lj. She is beautiful, with a beautiful smile and very good on not having a ng tube. Little miracle. I hope the future is as smooth as it can be.

Glad to read you've spoken to a lawyer, I think it's natural to feeling guilt, maybe some counselling will help?

Take care x x
 
Oh Hun :hugs: I'm so sorry. The guilt is awful, rationally you know you couldn't know what was going to happen but when it comes to our babies, there's not much rational is there?

PTSD is something I've been diagnosed with and it's horrific. I really think it's worth asking for professional help especially since you're on the legal route, we did that with Honey and it was a very long process and you have to keep going over things again and again, stuff you try (unsuccessfully) to block out. I know it's hard to ask for help though.

I am, I get growth scans every two weeks and cervix scans regularly too. I'm going to ask to be seen in the weeks between scans as my anxiety gets bad.

I know we've been through very different things but if you ever need to talk to someone who has been through medical negligence/ptsd/legal case then please please message me. You're not alone :hugs:
 
Oooh thanks for the update! Glad to hear she is making progress. Go go Phoebe! :happydance:

I think of you often because my son has CP too, though mild. I remember the long hours of thinking what ifs. Very hard not to do! Did your nicu have a psychologist? Oursreally helped me and there's no shame at all in asking!
 
Oh Hun :hugs: I'm so sorry. The guilt is awful, rationally you know you couldn't know what was going to happen but when it comes to our babies, there's not much rational is there?

PTSD is something I've been diagnosed with and it's horrific. I really think it's worth asking for professional help especially since you're on the legal route, we did that with Honey and it was a very long process and you have to keep going over things again and again, stuff you try (unsuccessfully) to block out. I know it's hard to ask for help though.

I am, I get growth scans every two weeks and cervix scans regularly too. I'm going to ask to be seen in the weeks between scans as my anxiety gets bad.

I know we've been through very different things but if you ever need to talk to someone who has been through medical negligence/ptsd/legal case then please please message me. You're not alone :hugs:

Ahh I didn't get notification of these messages :( Just saw them when I came on to update again. I see you have had your darling baby so I won't trouble you just now while you'll be basking in your newborn but when you have time, I'd love to talk about all of those things! No hurry, they said it can take up to 15 years! Congratulations, I know you must be absolutely on cloud 9 :cloud9:

Phoebe is now 6 months old and her problems are starting to become apparent. She has problems with her mouth, she doesn't seem to open it in anticipation of food. I am still expressing breastmilk for her and she is taking it in a bottle with a hard teat so I can cram it in. I have started to wean her but she needs to have pureed stuff because of her oral problems. She holds things but is entirely missing the instinct to bring things to her mouth. She seems to have left sided problems and I'm pretty sure she's deaf on that side too. Most of her brain damage was to the right side of her brain so that makes sense. Her Physio has mentioned low trunk tone and she can't roll over yet but can sit unaided. :wacko:
 
Oooh thanks for the update! Glad to hear she is making progress. Go go Phoebe! :happydance:

I think of you often because my son has CP too, though mild. I remember the long hours of thinking what ifs. Very hard not to do! Did your nicu have a psychologist? Oursreally helped me and there's no shame at all in asking!

I'm so sorry, I just noticed this and didn't get a notification. There wasn't a psychologist but they did send along a grief councellor, which I thought was their way of telling me she was dying and I freaked out a little :wacko:
 
Thank you so much for updating us--I think of little Phoebe often.

Does she have an occupational therapist to help her with the nursing? My nephew has a very rare chromosomal disorder and was born with practically no muscle tone anywhere. This became very apparent with nursing, which he couldn't really do. After occupational therapy, he had absolutely no issue.

Do you have any recent pictures of the little beauty? :)
 
We have an OT and a speech and language therapist, amongst many others but unfortunately she's just missing the instincts. She doesn't root and doesn't open her mouth (in anticipation of food). She doesn't babble either. I don't think it's a tone thing because she can suck fine. We think it's a sensory issue. I'll find a photo and post it :)
 
Here she is :)
 

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Oh, she is just so beautiful! I'm so sorry for all you've been through. Please lean on us.:hugs:
 
Iv just read this whole thread pheobe is just gorgeous !! You have handled yourself with such grace through an ongoing ordeal. you are such a great lady I will continue to check in on your thread if you ever need an ear to bend please mail me. X
 

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