So scared.

[sophxx]

So sorry about the awful time you had.
But so glad to see you got a cuddle with your lo. Hope she keeps improving. X

 

[sue_88]

What a great moment, so sweet and peaceful cuddled next to her Mama. You continue to be in my thoughts. X

 

[Kiwiberry]

So Phoebe has been breathing on her own for 14 hours now and tonight I got a cuddle

Thank you so much, everyone, for all the kind messages. It's appreciated a great deal.

What a precious photo! I remember the first time I got to hold my baby in the NICU (she is still there) and it was a magical moment .

 

[mummy3]

 

[lj2245]

She's pretty jaundiced and will be connected to her cfm monitor to read her brain waves for some time. The leads are glued to her scalp and the White hat she's wearing is a special one that holds it all together so I haven't seen her head yet.

She's still showing abnormalities in the cfm readings but because she's premature the doctors aren't 100% sure whether it's something to worry about or not. She isn't showing outwardly signs of seizures but her eyes seem to be permanently rolled back. Depending who her nurse is, this is either concerning or normal :/

She was weighed at midnight and has only lost 50g of her birth weight so is now 2400g or 5lb 5. She's the smallest baby I've ever held (my boys were 9lb 11 and 8lb 11) so it's pretty scary to me!

 

[lj2245]

So Phoebe has been breathing on her own for 14 hours now and tonight I got a cuddle

Thank you so much, everyone, for all the kind messages. It's appreciated a great deal.

What a precious photo! I remember the first time I got to hold my baby in the NICU (she is still there) and it was a magical moment .

How is she doing? I had to giggle when I saw your countdown to ttc. I mentioned yesterday while visiting Phoebe that I would love another and everyone was horrified that I'd even consider it while Phoebe isn't even home yet

 

[MrsRH]

 

[justplay91]

I'm so sorry this happened to you.
First off, congratulations on the birth of your beautiful baby girl. I'm glad to hear she's doing well.
Secondly, when my mom was 33 weeks pregnant with my younger brother, she went into preterm labor and her waters broke. At the hospital, it was discovered that, although he was only 33 weeks and still tiny, there was no way he would be able to be born vaginally, as he was completely sideways. But her TERRIBLE doctor wouldn't do a cesarean section, and just kept saying that he would be able to turn the baby eventually. While the doc was struggling to get him turned with suction and forceps, my brother's heart rate plummeted and stopped. After minutes, they were finally able to get him out. He wasn't breathing and was technically born dead. It took them another 5 or so minutes to resuscitate him, and I know when they finally were able to, he was on a ventilator for days. Long story short, he ended up being in the NICU for 4 weeks for various traumas, and being a preemie. He did go home on an apnea monitor, but he's almost 21 now, completely fine, and a borderline genius. He'll be graduating college in the spring. So while it can look really, really bad at first, babies are extremely resilient. I have a lot of hope for your little one. Good luck

 

[lj2245]

I'm so sorry this happened to you.
First off, congratulations on the birth of your beautiful baby girl. I'm glad to hear she's doing well.
Secondly, when my mom was 33 weeks pregnant with my younger brother, she went into preterm labor and her waters broke. At the hospital, it was discovered that, although he was only 33 weeks and still tiny, there was no way he would be able to be born vaginally, as he was completely sideways. But her TERRIBLE doctor wouldn't do a cesarean section, and just kept saying that he would be able to turn the baby eventually. While the doc was struggling to get him turned with suction and forceps, my brother's heart rate plummeted and stopped. After minutes, they were finally able to get him out. He wasn't breathing and was technically born dead. It took them another 5 or so minutes to resuscitate him, and I know when they finally were able to, he was on a ventilator for days. Long story short, he ended up being in the NICU for 4 weeks for various traumas, and being a preemie. He did go home on an apnea monitor, but he's almost 21 now, completely fine, and a borderline genius. He'll be graduating college in the spring. So while it can look really, really bad at first, babies are extremely resilient. I have a lot of hope for your little one. Good luck

Thank you I've honestly been amazed over the past week by what I've seen from my girl. Truly astonishing it's brilliant to hear stories like this because we are just beginning to hope...

 

[Kiwiberry]

So Phoebe has been breathing on her own for 14 hours now and tonight I got a cuddle

Thank you so much, everyone, for all the kind messages. It's appreciated a great deal.

What a precious photo! I remember the first time I got to hold my baby in the NICU (she is still there) and it was a magical moment .

How is she doing? I had to giggle when I saw your countdown to ttc. I mentioned yesterday while visiting Phoebe that I would love another and everyone was horrified that I'd even consider it while Phoebe isn't even home yet

She is doing great! Thanks so much for asking!

She is just now taking all her bottles on her own and waking up for her feeds. They won't tell me but, I think she might get to come home soon!

I try not to mention the TTC part to anyone in the hospital lol. I have heard comments from people and everyone is always saying we should wait at least a year before TTC for another baby. They sometimes even mention that out of the blue with no rhyme or reason lol. As if they can "sense" it on me or something. I just don't let it bother me and OH and I have already decided we don't care what other people think about if I get pregnant again.

 

[lj2245]

So Phoebe has been breathing on her own for 14 hours now and tonight I got a cuddle

Thank you so much, everyone, for all the kind messages. It's appreciated a great deal.

What a precious photo! I remember the first time I got to hold my baby in the NICU (she is still there) and it was a magical moment .

How is she doing? I had to giggle when I saw your countdown to ttc. I mentioned yesterday while visiting Phoebe that I would love another and everyone was horrified that I'd even consider it while Phoebe isn't even home yet

She is doing great! Thanks so much for asking!

She is just now taking all her bottles on her own and waking up for her feeds. They won't tell me but, I think she might get to come home soon!

I try not to mention the TTC part to anyone in the hospital lol. I have heard comments from people and everyone is always saying we should wait at least a year before TTC for another baby. They sometimes even mention that out of the blue with no rhyme or reason lol. As if they can "sense" it on me or something. I just don't let it bother me and OH and I have already decided we don't care what other people think about if I get pregnant again.

Oh it's brilliant that she's feeding Phoebe is being tube fed 32ml of milk every 2 hours and is far too happy with that set up. No effort required lol. She's not showing any interest at all in feeding herself so my plan is to get loads of skin to skin with her this week and see what happens.

My husband says no more babies but I reckon he will change his mind in time because he loves them just as much as I do. We have been lucky with our boys, they are so different but both amazing wee characters If I had enough room in my house Id keep on having babies as long as nature allowed me to!

I hope you have your girl home with you soon. Especially with Christmas coming up, what a gift

 

[lj2245]

It's been a bit of a rollercoaster for our girl. She is still charging on. Every time the doctors say she can't do something, she does it.

We had her MRI on Friday. We were told there would be a week wait for the results to reach Phoebe's consultant. Yesterday another consultant covering Phoebe's while he had a day off approached my husband and told him he'd had the verbal report and that it showed there was definite brain damage. He then said he couldn't elaborate further until the written report arrived. I feel it was really unfair of him to tell us that. We'd much rather have had all the information at once.

We were so down yesterday after hearing that. Then the CHarge Nurse from Neonatal phoned me about the possibility of me spending the night in the Mum and Baby room with Phoebe soon, as (in her words) "Phoebe is showing absolutely no signs of being interested in suck feeds at all". I knew this was untrue as I had seen her when her feed was an hour overdue because she'd pulled her tube out and she was rooting and sucking her hands and crying for her milk. I keep telling the nurses she's being kept too content with her 3 hourly 55ml tube feeds so has no reason to look for her milk elsewhere.

Anyway, after all these conversations we went in to see Phoebe for the nurse to tell us that she'd just wolfed down a bottle with 55ml of EBM in it. Her first suck feed. Proving them all wrong as usual 1 day later and she is on alternate tube/suck feeds.

It's very difficult to believe she could be brain damaged at all to look at her. SHe is amazing. The things she has done in the last 13 days have taken my breath away. I hope the report comes quickly so we can find out what it says and then let Phoebe prove them wrong again.

 

[Kiwiberry]

Your baby girl is so precious! I just want to snuggle her lol

It is great she is showing everyone she can do what they claim she can't. I know its so rough mama, hang in there though. It sounds like she is doing really well for her age. The only reason she is alternate feeding for her bottles is because she is tired right? That is so good if thats the case. She will build stamina in no time!

About the brain damage, that was really unfair of them to do that. I too would have wanted to know everything at once instead of being terrified for days before I got all the facts from them. I am so sorry mama . Preemies are so amazing, they surprise people just from being alive, such little miracles. Don't let anything you hear get you down. Your little Phoebe seems to be doing such a fantastic job. I look forward to reading her updates whenever you get the time to post them.

Riya is doing great too. She gets to come home on Tuesday and tomorrow through Tuesday morning I will get to room in with her!! She is only taking her bottles in full feeds but hopefully when she gets home we can work on breastfeeding again since she seems to prefer the bottle right now. Hopefully that will all change soon though! I started her out on breastfeeding but because of all the bottles she has taken things changed. Make sure if you plan to breastfeed that you work on it every day you can, don't take any days off. I made that mistake when arrived and regret it because I know thats the reason she is not wanting to breastfeed as much.

 

[lj2245]

Your baby girl is so precious! I just want to snuggle her lol

It is great she is showing everyone she can do what they claim she can't. I know its so rough mama, hang in there though. It sounds like she is doing really well for her age. The only reason she is alternate feeding for her bottles is because she is tired right? That is so good if thats the case. She will build stamina in no time!

About the brain damage, that was really unfair of them to do that. I too would have wanted to know everything at once instead of being terrified for days before I got all the facts from them. I am so sorry mama . Preemies are so amazing, they surprise people just from being alive, such little miracles. Don't let anything you hear get you down. Your little Phoebe seems to be doing such a fantastic job. I look forward to reading her updates whenever you get the time to post them.

Riya is doing great too. She gets to come home on Tuesday and tomorrow through Tuesday morning I will get to room in with her!! She is only taking her bottles in full feeds but hopefully when she gets home we can work on breastfeeding again since she seems to prefer the bottle right now. Hopefully that will all change soon though!

Oh wow, I was hoping she'd be home for Xmas so that is amazing news! You must be thrilled to bits

I was told that they usually start off with 1 bottle to every 3 tube feeds and then work from there but she has been fine with 1/1 from the start. I'm chuffed to bits. As soon as she has the energy to go to 2 bottes to 1 tube feed they will do that

She also no longer has any machines attached to her and is in a standard hospital cot Just need to sort the feeding and she can come home

 

[Kiwiberry]

That is so great!!! She is doing so well!! I just know she will be home in no time.

 

[Dinah93]

Thank you for your update. She really is the most stunning little girl.

The amazing thing about these tiny babies is their brain is still developing, and can often rewire itself to bypass the damage. I know of preemies who had grade 4 bleeds on both sides, families told they'd never hold up their head, let alone walk or talk, and at age 3 are living completely normal lives. Usually there is some delay in reaching gross motor skills, but baby brains can adapt in a way adult brains cannot.

 

[SoBlessedMama]

So pleased to hear another wonderful update!!!!! : ) She is completely gorgeous!

I would feel exactly the same way--it would have been so much better to have all the information at hand before hearing any news. But, as you said, Phoebe is already proving them wrong at every turn. I have every hope that the report and her prognosis will be far better than any of her doctors currently think! You're doing great, Mama--stay strong!

 

[lj2245]

So the MRI report came back today and, from what I understand Phoebe's brain has significant damage to the White matter in the part of her brain that controls movement, coordination and hearing and a large bleed at the back of her brain where the visual part is. It's not good news really and we are devastated. She is scheduled for another MRI at 4 months old and her doctor has already organised a team of physios and neurologists for her. We basically have to wait and see what happens now.

She's still doing well with her feeds. Tomorrow she's moving to 2 suck feeds to each tube feed and the doctors reckon she will be home by the end of next week or the start of the week after that. Basically, around her due date.

I wish I could cancel Xmas but I have 2 boys who need me to stick a brave face on and get on with it. Thank god for them or I would have fallen to pieces.

 

[Kirsty3051]

Beautiful little girl! I'm glad you finally found a name for her too.

I gave birth to my son at 35+2 and can't even imagine how you must be feeling. congratulations btw! X

 

[SoBlessedMama]

I am so sorry for the poor report. I'm praying for a miracle for sweet Phoebe. You've already seen so many amazing things from her, and I'm sure you will see many, many more. I can't imagine the pain you're feeling right now, and I'm so sorry for what you're going through. I hope you and your sweet family have a joy-filled Christmas in spite of the difficulties you're facing. Massive hugs and lots of love and prayers sent your way!!!