Neil Alan

"A baby is a gift from God." That was the theme of the sermon that week. I had just had 2 positive pregnancy tests. I was expecting my 4th child… the other kids were 17, 14 and 9. My husband's new job was unstable, as the company was threatening to close up shop. I hadn't told him yet, as I wasn't sure if he would consider it good news. Well, he was very excited, and so was I. I was a little nervous, because I was almost 40. I had to find a doctor. It was a little bit daunting.

My first visit to the OB was just fine. They explained to me that I would have to see a neonatal specialist, because of my "advanced age". But it was just standard procedure for them. We live in a rural area, and the hospital is only equipped to deal with any emergencies with a delivery. I had my first ultrasound at 12 weeks to determine gestational age. I knew something was wrong, though. They wanted me to see the specialist right away, and they made me an appointment the following week. I didn't even get an ultrasound picture.

The neonatal specialist was in Green Bay, a 2 hour drive for us. They had a special 4D ultrasound. He was very nice and thorough. After he performed the ultrasound, we went into his office to discuss the results of the ultrasound. Our baby had cystic hygroma which is cysts on the neck caused by an undeveloped lymphatic system. These cysts would probably continue to grow and suffocate our baby. The baby would probably die in utero, but if he made it to term, he would probably not survive very long. There was a 50% chance that our baby had a chromosome disorder. We left with an appointment for an amniocentesis, but still no ultrasound picture.

I started mentally planning our baby's funeral. When I found out I was pregnant, I had started to crochet a christening gown. I continued to work on this, but I considered it a burial gown. I was starting to show, but I didn't want to buy any maternity clothes. I didn't buy anything for the baby. I prayed constantly, "God, please let me at least be able to hold my baby." It was a very difficult time.

At almost 16 weeks, we went in for the amnio. As we walk in, my husband asked if I was scared. "I just want to hear some good news," was my only reply. Well, the doctor could not perform the amnio, because the membranes around the amniotic sac were not fused together like they should be. We would have to wait a couple of more weeks until they fused. Our baby also had a heart defect, which was common in down syndrome. BUT, the cystic hygroma was going away! That was GOOD NEWS! We were also told that we have a boy. We even got our first ultrasound picture!

The next several weeks were like a rollercoaster ride. Each bit of good news was followed by yet another problem. Yes, our baby has Trisomy 21 (down syndrome), confirmed by the amnio. Yes, our baby has an AV canal defect. No, our baby does not have an intestinal blockage. I have a memory book full of ultrasound pictures!

We were able to plan the delivery to be in Green Bay, and Neil would go to the NICU right away. The delivery was quite easy in comparison to the difficult pregnancy. I got to hold him and give him a kiss before he was taken to the NICU. He spent 11 days in the NICU. We took him home on Thanksgiving Day. We sure had a lot to be thankful for.

Neil has been on digoxin and Lasix since he was 1 week old. The only heart related problems he has had have been resolved by increasing his medications. Otherwise, he has been amazingly healthy. He is 6-½ months old now. He is rolling both ways. He can almost scoot, if he could just get his legs to cooperate. He is eating a wide variety of baby food, and he greets each spoonful with a happy "Yummm!"

His repair is scheduled for June 25, 2007. His surgery will be at Children's Hospital of Wisconsin, and Dr. Tweddell will be his surgeon. We named him Neil which means "Champion" and Alan, which means "Gift from God". I thank God every day for his gift to us.

August 2007 Update

Neil is recovering well from his surgery. He had a complete av canal repair at Children's Hospital of Wisconsin. Dr. Tweddell placed 2 large patches in his heart. He has an abnormal mitral valve, 4 leaflets instead of 3. Therefore, it is leaky. We just went to his pc on July 11, and the ECHO shows moderate leakage in the mitral valve and minimal leakage in the tricuspid valve. He also has 2 small pinholes at the top of each patch which should close on their own.

He has so much energy now, and he is eating like crazy...every 2 hours.

We just returned from his pc today, August 8. He now weighs 15 pounds 10 ounces, which is almost 3 pounds in 6 weeks! His pulse/ox is 100%! Yeahhh! Neil is still on Lasix as he still has some fluid around his heart. We go back to his pc in September, and if his lungs are clear, he will go off of the Lasix.

November 2007 Update

Neil just celebrated his 1st birthday! God continues to bless him. He is no longer on any heart medications, and he is continuing to grow stronger every day. He never ceases to surprise us with his accomplishments. He still has moderate leakage in his mitral valve, and this will continue to be monitored.