Fetal Cardiac Defect - Page 3

[rsummer]

Congrats! I am soooo happy and releived for you and your family. I hope everything continues to be as ideal as possible in this totally unideal situation. It is tuff to be in the NICU, esp when you can't really hold or interact with your kid. In the very near future though, she'll be in your arms!

[fazer6]

So glad to hear she's doing well. NICU isn't the nicest place in the world to be, but if she's improving and suprising everyone with her strength you'll have her home before you know it.

[linchi]

I just read through this whole thread and I can't imagine what this must have been like for you and your family. I am so happy for your little girl. Lot of hugs for you guys! Everyday her little heart gets stronger.

[Vespertina]

I remember when I first read this thread. I'm SO happy for you. I'm glad to see she's doing well and I hope she recovers nicely.

Congratulations, mama!!

[Peace+Hope]

OH, CONGRATULATIONS that your little baby girl is strong and making it through all these challenges!!!



i hope she continues to thrive and recover from surgery, and she's able to go home with you in the near future!

and thank you for updating us

[Noelle C.]

Originally Posted by Prensa

now I'm starting to wonder why I don't have a perinatologist, a genetic counselor, a case manager...hmm...maybe I need to be more of a squeaky wheel?

If there are no genetic defects in your family history, why do it? Not all insurance covers it, and it can be extremely expensive. You're not at all at fault for not seeing a genetics counselor first, not at all. You did what most people would have done, presumed a healthy baby.

I've got everything in my genetics, or so it seems. Were it not for this, I wouldn't have tested. As it is, not a single one of my relatives has ever tested/sought a counselor. Truly, if it wouldn't lead to an abortion (it wouldn't for us because I'm pro-life) of an already-conceived baby (in our case, this was before we started IVF), then why?

Do not blame yourself for this. Your baby isn't broken. Your baby is fine. Your baby and his heart are two separate things, just as breaking your arm doesn't mean YOU are broken. Your baby is a person, and his heart is part of the machine known as his body. Modern medicine can fix so many things like this. US technology also isn't infallible. I won't give false hope that he'll be born with a heart in normal, healthy condition, but it might not be as bad as it looks now. Remember doctors always prepare for the worst. Learn all you can now to help wit a sense of having power. Feeling lost is the worst feeling.

You'll be okay in the end, and your baby will be too.

[Prensa]

we're HOME!!

[beckyand3littlemonsters]

[olive&pimiento]

Yay! Congratulations!

[DocsNemesis]

Congrats!!!

[Kidzaplenty]

Congratulations!

[staceychev]

Congratulations! I don't know how I missed your thread before, but I'm so glad it got bumped so I could read the update. Congratulations on getting your little miracle girl home!

[ACsMom]

Yay!! Congratulations!!

So happy you both made it through! I must say, in reading your posts here and your birth story, I'm in awe of how strong you were through this whole thing - from seeking support here and being so self-aware and honest about your feelings, to coping with all the uncertainty, to taking care of Julianne as best you could at every moment. You are an inspiration.

[Peace+Hope]

oh, wonderful!!! so glad you guys are home. the last month must have been difficult in so many ways, but i hope it can become just part of the past soon.

and congratulations!

what is your baby girl's name?

[Prensa]

thanks you guys! Julianne is my daughter's name and you can see her pictures on my blog too.

We love being home, the best part is sleeping next to her and being in tune

[Prensa]

Hey everybody, I'm bumping this up for a friend to read it and also I'd like to update again and say that my beautiful daughter is almost nine months old, she had her second (of three) open heart surgery in March and was laughing literally 36 hours post op, and home again in a week's time. She's still exclusively breastfed, (OK she's had a little banana, heh heh), she's home on just one medication and she's almost able to sit on her own, she is quite literally the light of my life and I look into her smiling eyes every morning and truly KNOW what is important in life. She makes everything make sense.

Someone else said somewhere "not to take away from the love I have for my other children" and I feel the same way, but there's just something about Julianne, she has affected SO MANY people in such a wonderful way. I'm so glad she's here.

The pregnancy and first few weeks of her life were so scary, and so hard, but all that pales in memory now. when I see the pictures of those days in the hospital it almost feels like another lifetime. And I just love every day we have together.

I hope our positive outcome can bring hope and joy to you

[Bethla]

Glad to hear she is doing well. I often "forget" about the drama in the early days of my third son's birth. To see him as a happy, healthy seven year old is my wish come true.