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  #1  
March 2nd, 2009, 04:32 AM
Fist Pumping Champ
Join Date: Jul 2008
Location: NYC
Posts: 9,671
Hi ladies. I gave birth to my beautiful daughter Siera on Wednesday (Feb. 25) @ 32 weeks, 3 days. She weighed in at 3 lbs, 12 oz and was 16.5 inches. She was breathing on her own when she came out but was intubated and given oxygen to help her out. She was also given steroids to help her lungs mature a bit. She's jaundiced so she is under the lights and has been for the past two days or so. (Her birth story and pictures are also posted in the April '09 DDC.)

The most recent update is this: (I'm just going to copy and paste from another forum)

I'll start out with some good news before I get into the bad.. They're not giving her any more oxygen. She's currently breathing room air and her breathing tube will probably come out tonight or tomorrow.

And now the bad news...

While visiting our little girl today, DH and I were greeted by the Director of Pediatric & Fetal Echocardiography. They were asked to do an echocardiogram on Siera because she was born so early and they ended up finding three different things. The doctor was surprised that they managed to find them at all because newborns are just so small that they usually don't see anything until later on in life.

(1) ASD (Atrial septal defect)- it's an opening in between the left and right atria that's supposed to close after a certain point. The opening in Siera's heart isn't that big but it still hasn't closed so blood can flow from the left side of the heart to the right side or vice versa. This issue can resolve on it's own or she may need surgery.

(2) PDA (Patent ductus arteriosus) - it's a connection between the aortic arch and pulmonary artery that's also supposed to close after birth. Siera's hasn't closed yet. This can be treated with medication or, in the worst case scenario, surgery.

(3) Possible Bicuspid aortic valve - it's a defect in the aortic valve. Instead of having three cusps, Siera has two. It's only common in 1-2% of the population. This is the one that I was warned most about. They're going to pay close attention to this and I was told to make an appointment for her to be seen at about two months after being discharged from the hospital.

It's possible that all three issues can resolve on their own but it's also possible that she may need heart surgery. I'm panicked and about to have a heart attack of my own at this point. Seeing my baby lying there hooked up to all those tubes and then hearing that she may have a heart defect (or defects) is killing me. I feel like we keep taking one step forward only to take two steps back. I've been crying ever since I got home and can't stop. DH is confident that everything will be fine but I'm just terrified. I keep thinking that I've already failed as a mother in keeping my child safe and healthy and I hate my body for not staying pregnant longer. I'm even more upset for coming home instead of staying at the hospital because we're expecting a huge snowstorm (around 10 inches) and there's probably no way I'll be able to make it to the hospital tomorrow. Please keep my little fighter in your thoughts and please pray that these heart conditions resolve themselves on their own.

If any of you ladies have any experience with any of these defects, please let me know. I feel as if the doctors are too technical in their explanations and it would be nice to hear it from someone who knows first-hand what it's like. Thanks
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  #2  
March 2nd, 2009, 12:27 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Carroll Valley, PA
Posts: 3,168
Hey there!

First, congrats on your new baby girl! Hearing a cardiac diagnosis for you infant is so scary

Jude was born with a VSD that was small in size. His closed on it's own before his cardiology appointment when he was about 3 months old. If it hadn't closed, they would have gone in and put a patched it. Jude also had an electrical defect called Wolff-Parkinson-White Syndrome (WPW). This is currently being monitored. ASD's and VSD's are the most common occuring birth defect.

My best advice to any new heart mom is trust your cardiologist. If you don't, then don't hesitate to get another opinion. The first group of Pedi Card's we took Jude to, I just didn't like. They barely explained anything to us and I just didn't feel comfortable with them. We had a second opinion, and the new Cardiologist (at a different hospital) was so understanding of our concerns and spent over 45 minutes taking to us and showing diagrams and answering all question we had.

The ladies here are really great! Also check out the sticky with Cardiac Info. There are quite a few links posted that you may find helpful. Are you on Facebook or Myspace? There are quite a few groups and networks on there that are helpful and supportive as well. After Jude's diagnosis, I was shocked by the amount of "heart moms" I met.
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  #3  
March 2nd, 2009, 11:18 PM
5LilMonkeys
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Posts: n/a
Congrats on your DD.

My Sam was born with 2 ASD and PVS (pulmonary valve defect). Both of his ASD closed by the time he was 6mo so it can happen. He had surgery for the PVS last March. I agree with trusting your Card. Take it 1 day and a time.
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  #4  
March 4th, 2009, 10:18 AM
Cheep Sk8's Avatar Veteran
Join Date: Dec 2008
Posts: 212
Congratulations on your baby!

My daughter was also a preemie. One day I walked into the NICU to find them giving her an echocardiogram. They said they had detected a murmur and had me wait outside. It was very scary. Time stood still as I waited for them to talk to me. They originally thought she had ASD, but it was hard to get a good reading because she was uncooperative. They actually thought it would correct itself and be no big deal, but it turned out to be PVS. She had a heart catherazation done at 11 months, and is doing well. She will always need to have yearly checkups, and she may at some point need a valve replacement.

I know that your baby is so tiny and frail, but she will amaze you with her resiliency. Also, the doctors and nurses will amaze you with their knowledge and caring. Like the OP's stated, make sure you feel comfortable with your doctor and he/ she explains everything in way that you understand.

I wish you the best, and keep us posted with little Siera's progress.

Congratulations on your baby!

My daughter was also a preemie. One day I walked into the NICU to find them giving her an echocardiogram. They said they had detected a murmur and had me wait outside. It was very scary. Time stood still as I waited for them to talk to me. They originally thought she had ASD, but it was hard to get a good reading because she was uncooperative. They actually thought it would correct itself and be no big deal, but it turned out to be PVS. She had a heart catherazation done at 11 months and is doing well. She will always need to have yearly checkups, and she may at some point need a valve replacement.

I know that your baby is so tiny and frail, but she will amaze you with her resiliency. Also, the doctors and nurses will amaze you with their knowledge and caring. Like the OP's stated, make sure you feel comfortable with your doctor and he/ she explains everything in way that you understand.

I wish you the best, and keep us posted with little Siera's progress.
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  #5  
March 5th, 2009, 05:54 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Congrats on the birth of your daughter!


My son, Luke, was born with an ASD, VSD & PFO (patent foreman ovale). They tried monitoring his defects but did an echo @ 3months old & his VSD was not getting smaller & his pressure in the left side of his heart was greater than the right. He had open heart surgery 9/11/08 @ 3.5 months old. They repaired all three defects. He did amazingly well. They had told us to plan on him being there at least 10 days but he came home after three! It is very frightening to know your child has cardiac issues but I am so relieved that his are repaired & he is doing so well. He doesn't have to see the cardiologist until December (1 year from his last appt).

We are here to help you as much as we possibly can. If you have any questions, please feel free to ask. If you need to talk, please, please feel free to PM me. ((HUGS)) and I will keep your DD in my thoughts & prayers.
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