In light of today being Valentines Day and appropriately also congenital heart defect awareness day I thought I would share what’s been going on in our lives. On Friday, January 16th, Milo, the girls and I headed out to my 20 week ultrasound. I was really excited for the girls to see the baby in Mommies tummy for the first time. Their interest in the whole thing lasted about 10 minutes when they decided that the desk fan was more exciting. The baby, who we weren’t going to find out the sex of, appeared to be healthy and was giving the technician a run for her money as baby was “swimming” all over the place. We got our pictures of baby and headed into the exam room where we waited to be seen by the doctor. Milo and I were laughing at the questions of a 3 year old about the stirrups on the exam table and couldn’t wait to hear the good news from the doctor. As the doctor came in and sat on her stool she looked at me and said, “Let’s talk about the ultrasound.” I knew from having been through this with two previous pregnancies that something was wrong right then. The doctor then proceeded in telling us that there were some concerning things about the babies heart. We left there not knowing much at all. Just that the doctor had some serious concerns and we were to see a specialist next week. Milo and I being the eternal optimists didn’t think much of it. “If there is a problem with the baby’s heart, it will be fine; we’ll get it fixed and be on our way.”
The following Wednesday, January 21st, we meet with a specialist and had another ultrasound done. At this time we were told that our baby had a congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). HLHS is a rare and complex congenital heart defect in which the left side of the baby’s heart is seriously underdeveloped. Left untreated, this condition is 100% fatal and up until 15-20 years ago that was the result. Thanks to new surgeries the results are much better these days. The most critical problem with HLHS is that the left ventricle is especially small and therefore cannot do its job, which is to pump oxygenated blood to the body.
In all of this we decided that if the news we heard that day wasn’t the greatest we wanted to find out who this little baby was. So the great news we found out that day was that Milo and I will be having our first little boy! After searching through a million names we finally decided a couple of days ago that our little boy is going to be named Josiah (God saves) Nathaniel (God’s gift). We are claiming just that, our God is going to save His precious gift.
What happens now? Well, the hardest thing is that we just wait. Josiah is completely safe in the womb and we just pray that he continues to grow as strong as he can before he has to face what’s to come. While HLHS cannot be fixed, doctors have developed ways to work around the defects of the heart. Basically, through three open heart surgeries doctors will “re-plumb” the heart so that the right side of Josiah’s heart will do all the work. He will undergo his first surgery within the first two weeks of birth. Then have a second sometime between 3-6 months and a third surgery between 1-3 years. That’s the very short of it all. We hope to keep everyone updated as we learn more, process more and deal with what’s coming up in our lives. Although, Josiah has a tough road ahead of him, we are extremely optimistic that he will prevail!