when she is born...

[lolathechecker]

whats going to happen? will i be able to hold her right away, or will they whisk her away to some operating table? and will i be able to try to nurse her? whats going to happen? im more worried about her stay in the hospital than anything. i want them to do what they have to then let me take her home so i can start being a mom. how long do they normally have to stay in icu? i dont want to leave her there. its gonna kill me.:( can some of you guys share your experiences with me?

[kali]

dont be so worried everything will be ok! I guess it depends on where you live! for me , I was able to hold my child, directly after delivery, then they took him away, about an hour later I was asked to try and breast feed him because he was hungry. They kept him under watch for 24 hours then I was told to take him home. we made arrangement for his operations out side the country. all in all with both operations we were gone about a month, then we were able to settle down. It was a very emotional time, but today, my son means so much to me, he is a blessing!
huggsss kali

[Barb]

We didnt know he had SB. So, as soon as he was born they wisked him away and I didnt hold him until two days later. I did pump for him and was able to touch him through those little incubator holes. That is not really common I dont think when the hospital is prepared for an sb baby coming.

[Dodger67]

History lesson - it was 1967.
My SB was a total surprise - there were no prenatal diagnostics those days.
I was born in a tiny village hospital - the kind of village that has only 2 GP's, no specialists of any kind at all. When I showed no sign of weakening after 3 days I was flown over 400miles in one of GP's own airplane to an academic hospital where my lesion was closed. My parents had to return home to the farm and my elder siblings after a few days. I stayed behind in the city hospital for 6 weeks - during that time my clubbed feet were also fixed.

[Barb]

I had 6 'normal' ultrasounds and a negative AFP test so no one was expecting anything out of the ordinary. Although, I always told them that something felt weird with this baby. He didn't kick, but rather 'swooped' from side to side. Even with all of the advances they have made, nothing is perfect. You are so far ahead of the game then most parents are. You will be just fine!

[lolathechecker]

ive always had a strange feeling about this pregnancy. i think its just mom intuition. i never had those "pregnancy worries" with my first one. but the wierd thing is; i freaked out about her diagnosis for a whole day and cried and cried because my husband and i thought about terminating. but everytime she kicked i kept telling him "i cant hurt this baby" so, we decided to keep her and im no longer freaked out about it at all. the only thing i worry about is how long we're going to be separated in the hospital. i dont want to leave her there. i want to take her home after a few days. and i dont want to have a c-section, the doctor says its my choice on that one, but advised a c-section. he's worried about the pressure on her head and the membranes rupturing. i guess they might not, but i dont know if i want to take any chances. does anyone have any coping tips for the hospital trip?

[kali]

I think some babies already have signs of pressure on their heads while in still in the womb, but some dont. my son didnt have any signs until after the closure of the back. my son was delivered by natural birth. everything went fine , no rupture, etc.

[Barb]

Well, first off, I would not leave her at the hospital. Make sure a family member is AWAYS with her. The NICU staff may not like it and they may tell you that you can't sleep there but guess what, you are the legal guardian so you have every right to be there. I cannot tell you how many things I have seen happen when parents leave their kids at night. Since we were told years ago (before most of the hospitals started creating private PICU) was that we could stay as long as we were awake in a chair by the bedside. It was very hard but we switched off every few hours and had family help out. Some of the nurses would let you sleep but some were just plain nasty!

I think that having a c-section is good advice. The exposed membraines go through less trauma that way. But again, you have to do what feels right for you!

Hospital essentials for us:

Portable DVD player with lots of movies you want to catch up on. There is a LOT of down time and watching the clock is agonizing. (Or just use your laptop run the DVD software prior to, I made that mistake once)

Ipod (or laptop) and a very good set of earphones that plug out the hospital noise. Bose headsets were one of my best investments.

Cell phone with everyone of your doctors numbers, insurance contacts, and support network numbers.

Stupid gossip magazines (always a nice break from reality)

$1 bills and change

Laptop (ask prior to about how much wireless access is available). You will be overwhelmed with info and a laptop is so essential for googling everything you don't understand. Plus, you can send out emails with updates to family that will keep the calls to a minimum. We do not like people visiting when C is in the hospital or calling because it is always at the wrong time.

Keep a notebook with you so you can write down everyones name and questions that you have.

If you are in a teaching hospital be prepared to say the whole story everyone time some ding dong walks in the room. They send everyone in a white coat in to get a history that they can find, I swear. Now that I am a much more confident "hospital mom" I keep his history with me from a word doc and just hand it to them. When they ask me something, I tell them to read it first. I just have no patience for that. I am tired enough and don't need to repeat myself.

Question EVERYTHING! Docs come in during the night and change orders all the time without communicating this to parents. Know what meds your child needs and what time they are given. Start pacing in the halls 10 minutes before meds are due to remind them. It takes something like 30 minutes for the nurses to get meds ordered up so if they forget then it takes forever.

Sense of humor. It really helps!

I have a lot more but my husband needs help in the garage so I will post more later.

[cheryl]

I had a C section for my daughter, Its better for the baby if its not squeezed through the birth canal. I knew at 28 weeks that she had SB and hydro. She was wisked away and I didnt get to hold her until 4 days later( she has 2 surgeries at 18 hr and 2 days) But my husband didnt leave her side. When I was released from hospital we took turns staying with her. The doctors said when I was preg. that she probably wouldnt come home for a couple of months, she came home at 2 weeks.

[Dodger67]

Two weeks seems to be about average these days

[Gymp]

The first my Ma knew about my Spina Bifida was when the doctors started acting strangely right when I was born (1956),so she says.She didn't see me til a bit afterward and we were sent home a few days later.After about a year the family GP had starting referring us to the specialists in other cities.After many tests and another year the surgeries began and didn't stop til I was 18.

Gymp

[dahliafaolan]

I'm not sure how things are done now. All I know is how things were for my mother and I. My Spina Bifida was a complete surprise. My lesion was completely closed, no fluid leaked out, and the ultrasounds weren't as good back then. Thankfully, my mother had to have an emergency C-section for a completely unrelated reason. (I have never been so thankful for my incontinence problem as I was after hearing that story!) But when they pulled me out, one of the nurses (whom I got to meet when I was a teenager!) noticed the rather large mass on my back. But it was completely closed and the skin was just as thick as the skin anywhere else on my body, so I didn't have to go through the closure surgery until I was a few months old. However, they didn't let my mother see me until I was 9 hours old. In the meantime, they proceeded to tell her "what to expect". The idiots told her that I wouldn't survive past the age of 10 and that I would never amount to anything. I am now 23 years old and a college graduate. But that was 23 years ago and in a very small hospital that probably hadn't seen many Spina Bifida births at that point. Things might be different in a bigger hospital.

[Gymp]

The idiots told her that I wouldn't survive past the age of 10 and that I would never amount to anything.

This seems to be a perceived denomenator for alot of us.Ain't true though.

Gymp

[Dodger67]

True - and they are still putting out the same idiotic nonsense!

[XoBLoNDiE85]

The stupid genetic counselor we had told us Hannah would be a vegetable.....never make eye contact, coo, roll, NOTHING and she is actually above average according to her therapists!!!! PRAISE GOD!!!! She is amazing!:19a:

[angel]

Sometimes they paint a picture that is worse than anything you could have imagined on your own. I have to say that i would bet that 95 percent of the time things aren't near as bad as the doctors (of any speciality) said they would be!

Angel

[bcain]

My dd came home in 10 days, she had surgery following morning of her birth. I got to hold her for breastfeeding after she came off the respirator and was alert. about 2 days after birth.

[Dawn4sadhbh]

[ i dont want to have a c-section, the doctor says its my choice on that one, but advised a c-section. he's worried about the pressure on her head and the membranes rupturing. i guess they might not, but i dont know if i want to take any chances. does anyone have any coping tips for the hospital trip?[/QUOTE]

Hey there. I had no idea my daughter had SB until she was born. I was hoping for a home birth but when I was around six months my midwife got 'a funny feeling' and talked me into delivering at the hospital. My daughter was born naturally, and even though we both suffered through a back labour ( where the spine of the baby is pushed against the mother's spine ) she was no worse off, as far as her lesion was concerned, than if she'd been born via C-section. Apart from the pain that is. She must have suffered untold amounts of pain. There was so much meconium coming from her during the birth that the midwife thought she was a gonner for sure and warned me that she would be taken as soon as the cord got cut. Her biggest issue at birth was meconium-filled lungs. She had to be suctioned and intubated ( which has lead to feeding issues - another story !) and was taken from me and brought to another hospital almost immediately. that was the hardest part. I didn't get to see her until the next day.
My advice to you is to be as present as you can for your baby. As soon as she is born talk to her, say her name, touch her and reassure her that you will be with her soon. When it comes to babies, it's all about LOVE. Spina bifida or not.

[Papillon]

I was born 32 years ago, and I am not sure off the top of my head how long it was before I went home permanently, but I think a few weeks (I have a diary Mum wrote during my first year which would tell me, but do not have it at hand at the moment) - I was home (temporarily I think) for Christmas, which was about a month after I was born (I slept through the whole day, but it was good for Mum and Dad to have me home). I do knowfor sure, though, that I was born at one hospital and then transfered pretty much straight away to another hospital for my back closure and shunt operations. I do know that Mum and Dad went home each night - and that it really upset Mum (and I guess Dad, although Mum wrote the diary) to leave me there every night, but she writes to me not to worry because the Doctors and Nurses would take good care of me until she saw me the next morning. They lived about 45 minutes or something from the hospital, you were not allowed to stay with your kids then.

[LillyPie]

Lilly was home at about 2 weeks. I held her later on that evening after I had her because they were transporting her to another hospital (insurance reasons). While in the NICU I was allowed to hold her after the closure of her back, I stayed at the hospital all day and breast fed her throughout the day, the I came home slept, pumped my breast milk and in the morning I was back at the hospital again. I only came home to sleep and thats the only time she was given a bottle with brest milk. I had a c-section even though I am VERY afraid of needles. I put my own fears aside and decided to do what I thought would be less risky for Lilly. Yes a c-section hurts but I was more afraid of the complications that may occur if I didnt have one. Some people say that either way the membranes could rupture, IDK the how accurate either one are. Just do what u think is better for your baby. You can take your own blankets or stuffed animals to leave at her station to make it feel more homey. After her shunt was placed she was home in just a few days and then followed up with her pediatrician, neurosurgeon and orthotics the next week. The only thing they didnt look at right away was her bladder and kidneys, so make sure they do some ultrasounds and urine tests before she leaves the hospital. Lilly was in the hospital way to many times in the first 3 months of her life because of UTI's. For some reason that part of her care wasnt looked at initially. And I didnt have a place like SBC to find out info, I was kinda shocked when I was told I need to start cathing her because I didnt remember that part of what the perineatologist told me.. but everything will be okay and before you know it, it will all be over and everything will feel normal for you. You will look back at it all and hopefully be able to help someone else in your situation.

[mumtotwo]

The doc told me it was my choice for a normal delivery r c section but advised a c section. I was surposed to meet im again in the 18th dec 08 but went into labour on16th (3.5weeks early) by myself at home with no car and my partner was out took me ages to get in contact with him. We had to go to the city hospital (2hrs away) as the local hospital had no facilities for sb babies and wouldn't delievery - i though he would be born in the car on way there, finally got to hosp and jamie was born naturally 15mins later. His back was burst, they put him in a plastic bag thing and i got to nurse him for a while. then they took him to clean him up and i got to wash up and then was taken to icu to see him. his back was closed the next day and we were surposed to get him home the following day, unfortunally he got an infection and didn't get home for 3 months.
We couldn't stay at hospital as i had a 14mth baby at home and it a 2 hr joruney each way but the nurses couldn't of been nicer. If you do stay take plenty of entertainment with you it a long day sitting there.