Intoducing our baby girl

[sarah54]

I should have introduced myself a long time ago but here I am now. My name is Sarah I am 24 years old and my husband and I have been married for 3 years.
Our daughter Hannah was born at 37 weeks by emergency c-section after she was born she went to the NICU for a week due to breathing problems.
Ever since she came home from the hospital we have been seeing a physiotherapist due to her having tightness in her neck. After seeing the therapist for a few weeks she said she thought Hannah might have muscle problems because she couldnt hold her head up or pull her head up during tummy time, she also cannot hold her head up when we pick her up, it just flops back. She sent us to a pediatrician. The pediatrician is now saying that she thinks Hannah has brain damage and that is why she can't hold her head up for very long or hold her back straight when held in a seated position.

I was wondering what everyone elses premmies can do at this age (3 and a half months) and if you had/have any similar problems.

Thank you!

 

[cat81]

Congratulations on your baby girl. I don't really have any advice I'm afraid but I didn't want to read and run. I hope the doctors are wrong and that you get some answers soon. x

 

[25weeker]

Congratulations on your baby girl.

I think at 3 1/2 months corrected my lo could hold her head up but don't think she sat very straight. Are the doctors going to scan your daughters head to see if there is any damage?

You are in my thoughts as I know how hard the wait and see game is as my daughter had a grade IV ivh in the womb and we have spent the past 19 months waiting to see thE impact of it. To date it hasn't shown any but I know there is still some way to go.

 

[sarah54]

Thank you for replying.

Yes we are being sent for an MRI, however it won't be until december or January.

We are trying to stay optimistic it's hard though.

 

[lil-star]

Eli was born 10 weeks early & had a dreadful twist in his neck. He was due an MRI when he came home but they couldn't sedate him so he never had it. We did physio with him& preserved & it's kinda straightened itself out now but still holds it at an angle & turns it very slow. He can only just push himself up now but can't support himself for long on his tummy. The hardest thing is waiting and you can waste alot of precious time doing so. Enjoy your beautiful daughter and when or if the doctors say something you can deal with it then, it's the only advice I can give because I'm in the same boat x

 

[vermeil]

Hello and welcome Sarah! Congratulations on the birth of your beautiful little Eli! I know the waiting game is very hard - but you know what, these small creatures are amazing. Their brains are still developping and growing every day.

My own son had a really tough start - they had to ressuscitate him often. A few months after he was released from the hospital he was diagnosed with possible cerebral palsy - essentially brain damage, because his right side was a bit stiffer than the left. I was devastated. He had overcome soooooo much and was doing so well, it was a huge blow. We did physiotherapy for 7 months while on a waiting list for a centre specializing in such handicaps. When we finally met the team of specialists and they examined him, after an hour they said essentially 'what the heck are you doing here? he's perfectly normal'

The brain specialist said it was pretty common for preemies to have small signs of brain injuries, to have them disapear completely within a year. Their brains just adjust and develop in amazing ways. Your daughter wasn't a micro preemie so she has the added benefit of having developped in the womb, a more gentle, natural environment obviously than the harsh reality of the nicu.

Wishing you and Eli all the best

 

[BrandiCanucks]

Are you going to Sick Kids or Mac for the MRI? Mac has an extremely long wait list. We go to Mac for our neurologist, but all things genetic and all my daughter's MRI's are at Sick Kids. They are AMAZING there!!

My oldest has microcephaly, complex partial epilepsy, peripheral hypotonia, chromosome translocation, Pica, Global Developmental Delays, and much more. If you want to chat a little more, feel free to send me a message.

 

[sarah54]

Brandi - thank you for replying. We were sent to Mac so we have to wait until nov to meet with the anesthesiologist and then wait until they book the actual MRI after that.
I wish we new that sick kids was faster, I might call Hannahs pediatrician and ask why we weren't sent there.
It's just so hard waiting! We just want to know what is wrong with our little princess!

 

[BrandiCanucks]

Hun, nothing is WRONG, just unique, different, special, etc. It took me a LONG time to realize what people meant when they said that to me.

We were told up to a 2 year wait for Mac, so we pulled our referral out of Mac and put it in to Sick Kids. We waited 4-5 weeks for the MRI at Sick Kids.

Good luck with the MRI, and remember to send a message if you need to talk.

Mac is wonderful too and we go there for most of her conditions (she has 8 doctors in total, currently) but we LOVE Sick Kids. Perhaps you were referred to Mac because of a distance thing? We're in Brantford, which is why she sees most doctors in Hamilton.