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November 2014 Moms
brttmr05
member
Heart Issues - ASD
brttmr05
member
I haven't been on here much in the 7 1/2 months since my son was born. Mainly because on top of the normal postpartum issues I planned on facing, our birth story was a little exciting and left me with some major PTSD. I know several people have experienced things that are way worse than our situation, and I am not here looking for sympathy. I am here looking for encouragement and support.
On November 20, I went in to the hospital for a normal induction. This was my first child, and how I'm feeling right now, my only. We had our bags and were ready for a normal birthing experience. All we had heard for 36 weeks was that I had a textbook pregnancy, and everything was great.
After 18 hours, I hadn't dilated more than 1 cm. My doctor could feel DS in position, but was convinced he was face up. Since I wasn't dilated enough to turn him, we opted for a c-section. Turns out it was the best decision we could have made.
My son came out, was cleaned up, cried and my husband held him. We took the normal operating room pictures and off they went to the nursery. As soon as I got back to my room to recover, our pediatrician came in, introduced himself, and went over what he found during the examination of my son. He had really tight, thick callous-like skin over his hands and feet, with scaly skin over his chest. His recommendation was to send photos to a dermatologist friend of his at the area Children's Hospital for his opinion. 10 minutes later, I was told a helicopter was on the way from Pittsburgh to take him to the NICU. They thought he had a condition called "Ichthyosis" - which varies on a severity scale. Some children live normal lives, some their skin breaks down so much they can't be touched...
So off he went. In a helicopter in an isolet. They at least brought him in to see me before they left, but I wasn't allowed to touch or hold him. My husband was making arrangements with family to ride up to Pittsburgh - 50 miles away from me in Wheeling. After begging my doctor for two days, I was finally released to join them. That was probably the hardest part of the entire ordeal - being so far away from the child I've been preparing so long for.
After I arrived at the NICU, I met doctors and genetics specialists. Test after test was run - way more than any newborn gets after birth. Long story now short - it was not ichthyosis. PHEW! BUT, during testing, the electrocardiogram found an Atrial Septal Aneurysm that was prolapsing through the tricuspid valve (technical terms I would have NEVER cared to learn). The EKG didn't show any signs of distress, and we were told he would probably outgrow it.
Flash forward to our follow up echo last Tuesday. While it has gotten smaller, it has not shrunk as quickly at the cardiologist had hoped. And now he thinks there may be a small hole in the ASD. Good news - he doesn't want to see us for a year. And he cleared DS for surgery in August to bring his left testicle down. The issues that come with this sort of defect normally don't present themselves for 40-50 years, but they will "fix" it before kindergarten if it doesn't fix itself. In the meantime he has had surgery for pyloric stenosis. Now we could be one day facing open heart surgery...I've had so many ups and downs the past week. I was finally feeling back to myself a little bit and more human than anxiety ridden alien. My sweet little boy has such a wonderful personality and makes us so happy. I just want him to be around as long as possible.
I'm sorry for typing so much. I just had to get this off my chest. Again, I'm not looking for sympathy. My heart aches for all those mommies out that dealing with ANYTHING right now, especially a major issue. We are here to support each other, not tear each other down. Thank you for reading this. I appreciate the support whether you say anything or not.
Re: Heart Issues - ASD