Hey Ladies!
I am just so relieved today after finding out yesterday that my (3 week old) sons PKU test came back NORMAL! YAY!
When I was pregnant with him, I found out I was a carrier for Cystic Fybrosis so they had my husband get tested too and he is also a carrier. We totally freaked out and got all 4 of our kids tested and NONE of them have it! (Each of our children have a 25% chance of having it, a 50% chance of being a carrier and a 25% chance of NOT having AND NOT being a carrier)
We didn't want to do an amnio because to us it wasn't worth the risk so we didn't know if this baby would have it or not. We went ahead and met with the peri-natologist even though we weren't going to do an amnio and during our 1st visit with him he did an ultrasound and found that there might be something wrong with his heart.
We continued seeing him through the rest of my pregnancy and also a pediatric cardiologist who said that the baby could possibly have a coarctation (narrowing of the aorta) but they wouldn't know for sure until after he was born. They siad it was pretty much a 50/50 chance.
Well, after he was born we found out he DID have it and he ended up having heart surgery when he was 9 days old. He's doing great and we've been home for a week now.
I had called his dr. to check on his pku and he said that it had never gotten done! I KNEW they had done it cause I watched them but I guessed they hadn't mailed it or something. SO... we had been SO nervous waiting on these results and they didn't even have the test! So... they did the test again (we were still in the hospital for his recovery) and we were both convinced he was going to have it. BUT, yesterday I found the papers from the FIRST test and went ahead and called the number on it just to check and the lady said that they have TWO tests done on him and BOTH were COMPLETELY NORMAL! Yay! I didn't realize until then how much I was stressed about it but all of a sudden I could breathe SO much easier!
I just knew I was going to spend his whole life watching him suffer after he had already had to go through heart surgery so young. I am SO THANKFUL that it won't be that way! I hated seeing him not breathing well before the surgery and hurting afterwards... I don't think I could handle him having to go through anything else!
Do ya'll have stories like this of either your children or you? It's amazing how much you feel everything that your babies have to go through! I hate having that scare of "something could be wrong!"
Thanks for letting me share :o)
Thank you for all of your responses! I am sorry for those of you who have also had to go through times like this! Thank you for sharing your stories though! I agree that prayer DOES heal and has helped me get through all of this!
Thanks again!!
Yay! What a great post!
I had a 26 week, 1lb 11oz preemie, who is now a perfectly happy healthy 17 year old boy, having spent his entire life so far blowing the statistics out of the water.
Enjoy every second of him!
:)
So thrilled and relieved for you guys - thanks for sharing some great news on here!
Yeah, I can not tell you how relived I was when my son's sweat test came back negative for cystic fybrosis too!
At nine months my daughter had been having trouble breathing for a little over a month. We tried the nebulizer and it wasn't really helping, so they did some blood work. I was told they were doing a full workup and they just wanted to check everything out. I was so worried. They then asked if my husband and I had ever been tested for CF, we were terrified (neither of us has ever been tested) After the longest 9 days of our lives we were delighted to find out she has asthma!
One of my good friends has a 3 year old with CF and he spent almost two months in the hospital last Fall, keep praying for a cure and continue being thankful for your precious baby boy. I hope that is his only surgery needed!!!
So happy for your family, it's always great to share good news!! :)
Wow! I can't imagine how you must be feeling!! Exciting isn't the right word at all - that's incredible!! Congrats on having so many healthy kids considering the odds. That's pretty crazy.
We have a somewhat similar story. When our first was born, it was discovered something was seriously wrong. She also had a heart defect that required open heart surgery (almost the same age too - she was 4.5 days old). It's a type of defect that they can't see via ultrasound unless we go to a cardiologist, which we had no reason to think our unborn baby would need to be seen by a cardiologist while in the womb.
Anyway, we later found out that my husband and I are both carriers of a really rare genetic disorder that is also fatal like CF...well, it's differnet than CF, but it has a low life expectancy. It causes bone marrow failure (aplastic anemia), leukemia, and different types of cancers (even if she has a successful bone marrow transplant, she'll still develop the other cancers). It's a very rare and complicated disease. We have a 25% chance each time we have a child for them to have it. It's called Fanconi Anemia.
Anyway, so our first was born with it (she's currently in severe bone marrow failure). It was a very difficult decision each time, but we felt strongly it was the right thing, and we've had four more babies - all healthy. Well, I'm 32 weeks prego with baby #5. She looks completely healthy, no sign of FA at all. We also always refuse the amnio because of the risk. We just wait until they are born to test them. We're hopeful that she'll be the sibling donor that our oldest needs for a bone marrow transplant (they'd use the cord blood). None of our others match.
Anyway...it's a scary thing to go through for sure. And wondering if your baby is going to be healthy or not is so difficult. It's been a relief each time our babies have been healthy. But our sick girl is so worth every bit of everything. It's not easy to watch the disease progress...it does break our hearts...but she's amazing and we'd have her again and again if we could redo it all.
Congrats again on the healthy baby!!
I'm so happy everything turned out okay.
And I'm sorry you and your little one had to go through this.
Wishing you continued great health!
So happy for you! :)
My son had a hole in his heart. At birth, they rushed him off out of my arms and did tests on him, I didn't get to even hold or see my newborn baby again until he was almost 15 hours old, and then the Dr.s still couldn't detect exactly what was wrong so it was very nerve raking... especially since my sister had just had a very sick baby who was in the NICU for almost 2 months.
Then, it turns out, his heart defect was common and would close and not interrupt his life. It closed when he was about 2 1/2.
So, that is wonderful news for you and your family!
When I was pregnant with baby #3 we went for our first ultrasound and all seemed normal, except that the doctor spent more time than normal on the baby's head. I later got a call that the doctor wanted to do the test again. When he did, he said the baby had something I'd never heard of: Dandy-Walker Malformation. DWM is when a baby's cerebellum either does not develop or develops with holes. (There are other problems too, all involving the brain structure.) He had never seen this before so could not give us any information so I did what any modern mom does, go to Google. What I learned there sent me into a state of grief for nearly four months.
Because I was now considered a high risk pregnancy, I had to go to weekly appointments with a specialist in Wichita. She told me that the baby could be born "normal", could be a vegetable, and on and on. She wanted me to deliver on the high risk floor of a huge hospital and have a battery of tests. I agreed to the tests but put my foot down with being in a strange hospital, since in my opinion, the birth process was not the problem. I met with my own doctor, a family physician, and he felt like he could handle the birth at the small local hospital, as long as there was extra staff on hand "in case".
On Feb. 8, 2006, I gave birth to 7#, 13 oz, Benjamin Michael, who came out screaming and eager to nurse. The extra staff was dismissed and we were left alone to carry on like any other new mom and baby. At 6 months of age we returned to Wichita to get an MRI and guess what? The gaping hole in his cerebellum was no longer there!
How you ask? Prayer. There were people all around the world praying for this little boy, who up to 37 weeks (the last sono we had), still had a hole in his brain. I don't know if he was healed in utero or outside...what matters to me is that he is entirely normal and getting ready to start kindergarten in two weeks.
I totally understand the fear a couple goes through, wondering what their baby is going to be like, how having a "special" child will affect their lives and so forth. For us, his life will always be a testament to the healing grace of God.
K.
Oh that's great news! I'm happy for you!
I'm so very happy for your wonderful news! Thank you so much for sharing. After having walked through the trials of 2 children with CF born to a dear couple my husband and I have known for years, I can't help but feel extremely happy that you will not have to experience this with your 4 kids. God is very merciful and loving to all He has made. Midwife Mom of 3
