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#1 of 100 Old 08-23-2008, 11:11 PM - Thread Starter
 
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For those of us with babies born with congenital heart defects?

My ds will be 1 on Tuesday! He was born with Tetralogy of Fallot and had his full repair back in Dec when he was 3 months old. He is doing great now. His blood vessels in his left lung are smaller than average, but other than that he is seemingly "normal" health wise and we don't have to go back to the cardiologist until December! :

I am currently working on putting together a chapter of Mended Little Hearts up here in Vermont and am meeting with someone from the AHA in a couple weeks

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#2 of 100 Old 08-24-2008, 09:28 AM
 
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I'm so happy that he's doing so great!

Connor has 22q, and because of how common heart defects are for 22q kids (particularly TOF) he is considered a cardiac patient. But, thank every one of his lucky stars, he only has a minor murmur and displaced carotids!!!!!!!! When we got his diagnosis of 22q at 11 months old, the first thing the geneticist said was "he needs to get to a cardiologist ASAP, I'm trying to fit you in today if possible." It was very scary to think that he might have been living with a heart defect that no one noticed. But he's fine! Nearly every single one of his 22q friends has heart defects, so I'm very familiar with it. to you and your family, I'm so glad it's going well for you!!!!!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#3 of 100 Old 08-24-2008, 04:16 PM - Thread Starter
 
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Thanks for replying! I'm so glad to hear he is doing well heart-wise! I don't know much about his condition (22q), but it's nice to meet you and I hope to learn more!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#4 of 100 Old 08-25-2008, 08:36 AM
 
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I am glad your children are doing well.


My 9 week old ds has pulmonary stenosis. He was born with two asds, one of those has closed.

They believe he has a related syndrome and are doing genetic testing, those results take a long time though. :/

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#5 of 100 Old 08-25-2008, 08:55 AM
 
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Hello. My ds was born with a VSD and had OHS at 5 months to repair it. We were hoping to wait until he was closer to 1 year for the surgery, but by 4 months he was FTT. He has no limitations now I can't believe that it's been 7 years. Other than routine visits to the cardiologist every few years, we don't have to do anything special for him.

He has struggled a bit with low upper body tone which I think was because of the time when he had his surgery. Didn't crawl until 9 months, but by 11 months he was walking. This past summer I put him into a gymnastics program which he loves, and that has really been helping with his upper body strength.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#6 of 100 Old 08-25-2008, 10:28 AM
 
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Originally Posted by hollytheteacher View Post
For those of us with babies born with congenital heart defects?

My ds will be 1 on Tuesday! He was born with Tetralogy of Fallot and had his full repair back in Dec when he was 3 months old. He is doing great now. His blood vessels in his left lung are smaller than average, but other than that he is seemingly "normal" health wise and we don't have to go back to the cardiologist until December! :

I am currently working on putting together a chapter of Mended Little Hearts up here in Vermont and am meeting with someone from the AHA in a couple weeks
Hi there. My nephew has/had (not sure how to phrase that) TOF and had repair at nine weeks. He is 7 now and is doing absolutely wonderfully from a cardiac standpoint. My sis watches closely in hot weather, and probably won't allow a contact sport for him, but he did do BMX racing for a while and is a demon on his scooter! He understands why he goes for regular check ups for his heart. Eventually there may be more repair or valve replacement, but that is down the road. Just wanted to add my encouragement.
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#7 of 100 Old 08-25-2008, 10:35 AM
 
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Hi there =) I have two boys with heart issues. My now 2 1/2yo had surgery at 3mo to repair a vascular ring & a PDA. The next month he started passing out after alot of monitoring, various tests (all declaring him heart healthy) & almost a year on Atropine 3xday- he had a pacemaker put in at 19mo. His heart was *pausing* up to 7sec at a time with the fainting episodes. He's now doing very well! His pacemaker just kicks on whenever his heart rate falls below a certain point to stop him from passing out.

Also my 3mo was checked out (different cardio) & has a heart murmur and pulmonary stenosis. Abimommy- I noticed you said your little one had the same thing? What does your cardio say about it? Ours pretty much blew off all of our concerns & said that he'll probably release us from care in Nov @ the next appt- that kids normally outgrow it? We're going to try and get him switched over to our 2yo's cardio instead.
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#8 of 100 Old 08-25-2008, 02:07 PM
 
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Hi there =) I have two boys with heart issues. My now 2 1/2yo had surgery at 3mo to repair a vascular ring & a PDA. The next month he started passing out after alot of monitoring, various tests (all declaring him heart healthy) & almost a year on Atropine 3xday- he had a pacemaker put in at 19mo. His heart was *pausing* up to 7sec at a time with the fainting episodes. He's now doing very well! His pacemaker just kicks on whenever his heart rate falls below a certain point to stop him from passing out.

Also my 3mo was checked out (different cardio) & has a heart murmur and pulmonary stenosis. Abimommy- I noticed you said your little one had the same thing? What does your cardio say about it? Ours pretty much blew off all of our concerns & said that he'll probably release us from care in Nov @ the next appt- that kids normally outgrow it? We're going to try and get him switched over to our 2yo's cardio instead.
They believe the stenosis could resolve on it's own but they are going to see him again in five weeks.

The syndrome they believe he may have has other hearts issues related that could develop so they are going to do more echoes to keep an eye on the walls of his heart.

Have they order genetic testing for your children?

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#9 of 100 Old 08-25-2008, 02:32 PM
 
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Great Idea for a thread! My younger son, Noah has Down Syndrome, and like 40-50% of all DS kids, also has heart defects. He was born with pulmonary stenosis, AV Canal, Double outlet right ventricle (I've had a couple docs refer to this as TOF, but I guess it's not exactly, although he did have "blue spells" like TOF) and hypoplastic left ventricle. He had a BT shunt surgery at 3 months old, but did not have the repair surgery until just after he turned 3 years due to the left ventricle. We were hoping it would grow enough for a full repair.

Going into the surgery, we weren't even sure if a repair was possible, depending on how big his left ventricle was. Plan A was the repair, patching the septal defects and splitting the common valve into two. Also widening the pulmonary valve (it was minor at surgery time, thankfully). Plan B was to do the first phase of the Glenn procedure, which would mean more surgeries down the road. They really weren't totally sure which they would be able to do until they opened him up and got a good look at things.

Thankfully, he was able to have the full repair done so he shouldn't need any more surgeries. All that's left is a small amount of scar tissue around the pulmonary and a minor mitral valve leak, neither of which will need attention unless they would happen to worsen. He's now 5 and we're just on yearly checkups with the cardiologist, no activity restrictions and one healthy, and quite energetic little boy.

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#10 of 100 Old 08-25-2008, 05:59 PM
 
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hello ladies! my daughter is 6 weeks old and was just diagnosed a couple weeks ago with 2 VSDs, one is small with a skin flap already forming. one is 'medium' so right now we are following up every month and checking wt gain watching for FTT. she is gaining weight, i weigh her obsessively on my postage scale :-). i wanted to know where you all stand on vaccinations? do you feel like your child with heart defects needs them more than other kids or is that putting your hcild at greater risk because they are already 'compromised'??? i am torn and looking for advice! what do your cardios say about vax?


I had posted this in the heart defect Tribe before i saw this thread!
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#11 of 100 Old 08-25-2008, 07:04 PM - Thread Starter
 
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hello ladies! my daughter is 6 weeks old and was just diagnosed a couple weeks ago with 2 VSDs, one is small with a skin flap already forming. one is 'medium' so right now we are following up every month and checking wt gain watching for FTT. she is gaining weight, i weigh her obsessively on my postage scale :-). i wanted to know where you all stand on vaccinations? do you feel like your child with heart defects needs them more than other kids or is that putting your hcild at greater risk because they are already 'compromised'??? i am torn and looking for advice! what do your cardios say about vax?


I had posted this in the heart defect Tribe before i saw this thread!
Nice to meet all you mamas!

In response to your vax questions, my ped and cardiologist said to go ahead normally...HOWEVER, I look into each and every one just like i would with any kid and we are doing a delayed selective schedlue...oops DS is up from nap gtg...be back later!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#12 of 100 Old 08-25-2008, 07:07 PM
 
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my "baby" w/ a heart defect is 10..can i join?

we went through open heart surgery for several issues when he was 2. very trying but he's doing awesome now. he is self conscious about his scar though.
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#13 of 100 Old 08-25-2008, 08:14 PM
 
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we went through open heart surgery for several issues when he was 2. very trying but he's doing awesome now. he is self conscious about his scar though.
I wonder how my ds will feel about it down the road. Right now when someone comments on it, he's like "yeah, I was in the hospital." It's quite a long zipper. But really, the alternative of not having it wasn't so great.

We did vax's on a delayed schedule - primarily because I was scared to think of the alternatives, you know. I'm neither advocating or not advocating it. I just had so much to think about at the time.....and my dh had back surgery for a herniated disc a week after ds's OHS -- so they were both my patients for awhile.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#14 of 100 Old 08-25-2008, 09:00 PM
 
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we haven't vaxed him yet, down the road, we may, although he doesn't need as many now. I was/am worried about compromising him any with the shots when he is homeschooled and not in contact with potentially sick kids on a real regular basis. He did get the synagis shots for RSV from 0-2 during RSV season (which is long here in AK) because that was a high risk and it was not a vaccination and didn't have any mercury preservatives. His cardio said to vaccinate normally, but we chose not to. His cardio doesn't reccomend prophylactic antibiotics for dental work anymore though .

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#15 of 100 Old 08-25-2008, 09:08 PM
 
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i didnt address the vax issue but I wasnt educated on vax at the time (8 years ago) and he did receive most of his vaxes. If the same situation arose today, i wouldnt do the vaxes but we dont do any now at at all.
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#16 of 100 Old 08-25-2008, 09:29 PM
 
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My ds,who is 7,had OHS to repair TOF when he was 10 weeks old.He had the total repair but they had to remove his pulmonary valve,which will probably need to be replaced at some point.They did give us a time frame of 20-50 years,but could be much sooner.He is very healthy,the only problem is he can't walk for long periods of time,his legs hurt him badly.We don't know what is causing that,it may be his genetic defect(which I will found out all about on the 4th).He also has Asperger's.He sees his ped card 2 times a year,once for an echo(which is coming up soon,always scares me until it's over!),and the other just for a checkup.

We don't vax.His ped card supports our decision,we'll find out about his ped tomorrow as he sees a new one.I'm sure she'll want us to vax,but it's not happening.We do have a religious exemption for school so I am bringing her a copy for both kids.I'm afraid the vaxes will compromise his heart or even make his autism worse,and both terrify me.

Ds actually is proud of his scar.He says it's where his broken heart was fixed,and shows it off .I'm afraid of what other kids may say,since because of the chest tube scars it makes it look like he has 4 nipples,and now that he's a little chunky,it's even worse.Thankfully he doesn't care what others think.

I hope everyone is doing great,here's healthy heart vibes: .

Student mama to one awesome,talented and unique dd,15 and one amazing, sweet and strong ds,12(born with heart defect Tetralogy of Fallot,also on the autism spectrum),9 cats,and 2 gerbils.
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#17 of 100 Old 08-25-2008, 10:27 PM
 
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Have they order genetic testing for your children?

No they haven't.. In my 2yo's case the drs believe that the drugs he was prenatally exposed to caused the heart defects. Most likely the same will be said of the newborn (biological brothers-same drug exposure).
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#18 of 100 Old 08-25-2008, 11:00 PM
 
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Both my boys have abnormal EKGs. We are still waiting on a cardio appt. It's not until October!!!!
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#19 of 100 Old 08-25-2008, 11:54 PM
 
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Hi! My daughter, Julianne, will be 1 on September 19th. She has Hypoplastic Left Heart Syndrome (A hypoplastic left ventricle, double outlet right ventricle and mitral and aortic atresia). I don't know if any of you remember this or not (I was a toddler at the time) but "Baby Faye," who was given a baboon heart in the early 80's, had HLHS. Julianne had OHS at 5 days, arrested at 2 weeks and was put on ECMO, had a heart catherization, threw a clot, had a stroke and went into heart failure at 5 months and then had another OHS at 6 months. Amazingly enough, her heart has just gotten better and better since the last surgery and as of card. visit on 8/1 she's no longer in heart failure! Thank you, God. She'll have another OHS when she's 2 1/2 and then hopefully that will be it. The oldest survivors of HLHS are just now in their 20's (although we've found one who's 30) so we and her doctors don't really know what to expect as far as the future goes. She'll never be totally "fixed"...what she has is called a palliative repair. We are just enjoying everyday and trying not to take even a moment for granted. Julianne is behind in gross motor skills and doesn't eat (she's tube fed). These are both things we're working really hard on with therapists. However, she is the happiest baby you'll ever meet..."talks",dances,waves and LOVES everyone she meets! You'd never know she has so many problems (unless she's shirtless of course).

Thanks for starting a heart thread. Its great to talk to other parents in similar situations!
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#20 of 100 Old 08-26-2008, 02:23 AM
 
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No they haven't.. In my 2yo's case the drs believe that the drugs he was prenatally exposed to caused the heart defects. Most likely the same will be said of the newborn (biological brothers-same drug exposure).
I don't know what kind of drug exposure.

You could always just request genetic evaluation.

They just have you come in and they ask a lot of family history and take a look at them closely. If they want to do testing they can get samples.

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#21 of 100 Old 08-26-2008, 12:37 PM
 
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Abimommy-- My boys are both foster/adopt. So their drug exposure was of the illegal sort I might mention the genetic eval to their dr next time we go in. The only problem would be with them asking family history is that we virtually have none
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#22 of 100 Old 08-26-2008, 12:44 PM
 
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add my dd to the list. She had coarctation of the aorta fixed at u of m in ann arbor mi.
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#23 of 100 Old 08-26-2008, 01:02 PM - Thread Starter
 
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I am so happy i've started this thread! I actually belonged to a yahoo group of mamas of heart babies and for some reason or another circ' came up and when I gave my opinion on it (that it is barbaric and terrible) I got slammed, called every name in the book and was pretty much ostrasized from the group! I was told that they hoped my son would get teased for being intact (pretty mature huh?)

So it's nice to have a little niche on MDC for us mamas with heart babies (and yes everyone can join...even in your heart baby is 10 or older! lol)

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#24 of 100 Old 08-26-2008, 01:53 PM
 
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My baby is due in November! We aren't quite sure of the dx, at first it was hlhs, now it is a single right ventricle or TOF. We have another echo on 12 sept at childrens in boston. Below is his blog too so we can keep the family informed (otherwise they jump to their own conclusions or create a dx with what they find on the internet) At first the u/s tech was telling us this is the worst case scenario : yeah and ofcourse all the wonderful ped card at childrens said DON'T listen to what a tech tells you, they aren't heart experts. Anyway, it's already been a rollercoaster as I am sure you all can relate

thanks for starting this thread there!

www.babyblogs.com/jasper
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#25 of 100 Old 08-26-2008, 03:41 PM - Thread Starter
 
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My baby is due in November! We aren't quite sure of the dx, at first it was hlhs, now it is a single right ventricle or TOF. We have another echo on 12 sept at childrens in boston. Below is his blog too so we can keep the family informed (otherwise they jump to their own conclusions or create a dx with what they find on the internet) At first the u/s tech was telling us this is the worst case scenario : yeah and ofcourse all the wonderful ped card at childrens said DON'T listen to what a tech tells you, they aren't heart experts. Anyway, it's already been a rollercoaster as I am sure you all can relate



www.babyblogs.com/jasper


Boston is where my ds had his full repair for tof...let me know if you have any questions!!! They were FABULOUS there!
thanks for starting this thread there!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#26 of 100 Old 08-26-2008, 06:37 PM
 
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Thanks! hollytheteacher!

did you get to hold your baby after birth? the more I think about Jasper getting wheeled away right after birth the more I feel sad. I am thrilled we live so close to Children's and they are fantastic there, and I know he needs to get checked and stabilized, i would just love a minute with him !
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#27 of 100 Old 08-28-2008, 06:57 PM - Thread Starter
 
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Thanks! hollytheteacher!

did you get to hold your baby after birth? the more I think about Jasper getting wheeled away right after birth the more I feel sad. I am thrilled we live so close to Children's and they are fantastic there, and I know he needs to get checked and stabilized, i would just love a minute with him !
Yes, we did not know that he had TOF until he was already a day old; HOWEVER, he was taken to the NICU at one hour old because he and I both had fevers. They discovered his murmur there and did an echo the following day which is when they discovered TOF. (he was born in Burlington, VT).

Also, even though he had TOF he didn't have surgery until 3 months so i can't imagine why they wouldn't let you hold him/stabalize him or whatever. MY ds's case was also kind of on the "mild" side. He never had any tet spells or looked blue.

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#28 of 100 Old 08-28-2008, 07:54 PM
 
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Hi mommas!

DD will be a year next week (a lot of August/Sept 07 babies!) and has a moderate VSD. It is really, really loud now, which our regular ped says may be a sign it's closing. I hope so. Our cardiologist is really conservative generally, and cautious, so won't say as much until we do the follow up echo at the end of Sept. She was a 35 weeker and was diagnosed on day 4 in the hospital (the day we were supposed to be able to take her home) and it was quite the roller coaster. We did get to take her home that day, but it was a trying time. You guys know...

I worry that it won't close on it's own and that she'll end up needing surgery, but I really try not to focus on it.

She's done well, other than being small, and has not needed any medication and her EKGs have all been normal.

Nice to meet you all!
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#29 of 100 Old 08-28-2008, 10:43 PM
 
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Hi mommas!

DD will be a year next week (a lot of August/Sept 07 babies!) and has a moderate VSD. It is really, really loud now, which our regular ped says may be a sign it's closing. I hope so. Our cardiologist is really conservative generally, and cautious, so won't say as much until we do the follow up echo at the end of Sept. She was a 35 weeker and was diagnosed on day 4 in the hospital (the day we were supposed to be able to take her home) and it was quite the roller coaster. We did get to take her home that day, but it was a trying time. You guys know...

I worry that it won't close on it's own and that she'll end up needing surgery, but I really try not to focus on it.

She's done well, other than being small, and has not needed any medication and her EKGs have all been normal.

Nice to meet you all!
hi, nice to meet you! (even though i'm sure you'd rather not be here!) my daughter has 2 medium VSDs, that are also getting louder every day. but can i ask you about your daughters growth? how often do you weigh her, how much does she gain a week or month? maggie is gaining steadily its just not alot. she started off big (9# 7oz) so she is still 'big'...anyways i worry someone is going to think she is FTT at some point (and yes i know i am obsessing and projecting- its what i do best ) and want to do surgery instaed of waiting and seeing. sorry, i know i was rambling.
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#30 of 100 Old 08-28-2008, 10:58 PM
 
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Thanks! hollytheteacher!

did you get to hold your baby after birth? the more I think about Jasper getting wheeled away right after birth the more I feel sad. I am thrilled we live so close to Children's and they are fantastic there, and I know he needs to get checked and stabilized, i would just love a minute with him !
]

boston children's was great to us also. My son was in NICU for about a week (but didnt have surgery until he was 2). NICU was very very good to us.
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