Avery's Story Part II

Very little is known about Gastroschisis. 1 out of every 2000 babies born in North Carolina alone is born with this disease. 98% of the cases are seen at UNC Chapel Hill where they have both pediatric surgeons and highly experienced neonatalogist. North Carolina is seeing a rise in these births above other states. 90% of the cases seen have a successful care and recovery. At no point in Avery's life were we not expected to be part of that winning number.

I can't emphasis this enough. If ever there was a mommy-to-be that wanted to know as much as she could about her baby boy, that would be me. We knew every procedure, every statistic, every step of recovery. And we asked with every visit how he was. I took every vitamin and every precaution.

Every sonogram they kept telling me that if they didn't know otherwise, they would have thought Avery was just a normal healthy baby boy. Most gastroschisis babies stop growing after a certain point, Avery didn't have that problem. Every Tuesday and Thursday for a month I would hop on the table and talk to my boy, asking him to take his practice breaths (yes they breath in your tummy!) so that we could get to school. They had to monitor his development very closely. Especially his lungs. The doctors were watching to see at what point was he ready to come. They had to balance the premi issues in addition to the issues his gastrocschisis would have and they knew they waited too long it raised the chances of him being born still.

But that wasn't what they saw in Avery. They all thought he was going to be a very easy case.

I was ready at 32 weeks. I had put on so much weight and body was struggling. I couldn't climb up the stairs without being out of breath. I was developing carpal tunnel from my ligaments expanding in preparation for delivery and my hands would go numb and my acid reflex was out of control. I'm very much a go-getter and I couldn't stand sitting still and not being able to do my normal routine.

At 36 weeks Dr. Gooodknight and my OBGYN Dr. Boggis went back and forth on when they wanted to deliver me. I was originally scheduled to be induced on the 21st. But they were noticing a loop of internal bowel in Avery that was showing distention. Dr. Boggis was in Colorado skiing the week of April 6th and on April 9th Dr. Goodknight came in after the sonogram and told me what they had been noticing in Avery and that he thought that they needed to move up our delivery date a week. I called our Mya, our coordinator to let her know that I was ready to go whenever they conferenced and decided it was time. No hold ups on my end. On the 13th I woke up to a message from Mya saying bring your bag to your next appointment on the 14th. It was go time. I remember groggily waddling out of bed to the front porch where Daddy-to-be Jared was in my night dress and handing my phone to him saying "I just want to make sure I'm hearing this right, did they say tomorrow?" He was angrily pushing me back into the house saying "What in the world are you doing honey? Your nighty is tucked up in your panties."

It was 37 weeks. It was go time.

The story of my labor is a funny one and I will tell it some other day. But our little angel was born at 11:37pm on April 14th 2009. It was the most amazing day of our lives.

He did what he did for most all his life. Cried few times before closing his eyes and falling asleep. Five minutes later as Jared was talking to him and filming him he opened his eyes looking for that familiar voice and what in the world all the commotion was about.

They wheeled him over to me and we looked at our boy in amazement.

No mother, no father should ever know the pain of not being able to hold their new-born son. But we were just so happy he was alive and here.

They wheeled him to the NICU unit to wait for the OR. Because his case was not an emergency but still important, they took him down at 3am and he came out at 4am. We were exhausted and passed out until 6am when we got to see him.

He was still on the vent with an IV in each arm and leg. But he was alive, and he was doing so well. We met Dr. Helmrath right away, and he told us that he looked great. That his bowel, where the lining and skin had closed up around the outside part had closed tightly on a loop of bowel and caused two what appeared to be dead-spots in the bowel from where circulation hadn't been 100%. For the benefit of Avery's future he hadn't wanted to remove those places and the loop of bowel that was out until he saw how they tried to repair themselves inside of him. Because of the nature of the bowel and the amount of distention in the bowel he was unable to tell how much bowel was really affected. So he wanted to give it time to heal before he just cut away.

It would be 6-8 weeks before he did the second surgery.

We had to leave our boy almost an hour away in the hospital and go home. I was glad Jared's friends wanted to take him out when we got home because I fell to my knees and screamed at God that night. I just wanted my son home.

We went everyday and I pumped religiously every 3 hours and froze the milk. On day 4 we were finally allowed to hold our son. Those 4 days we learned to watch the monitors to know when we could touch him and talk to him post op. We watched his heart rate and blood pressures, his oxygen saturations to know when he was being stimulated too much and when he needed some encouragement.

Once he got off the vent he was our boy in cell-pod A we joked. Everyday we would be buzzed into the unit, sign in and wash our hands. Sometimes I went twice a day. We got to give him sponge baths , change his diaper, put little clothes on him. His little pot belly was our precious joke. Jared joked that he was Mr. Potatoe head, that they were working on getting his plumbing right. No Daddy was more into his son's care. No Daddy was more proud. No son knew his father's voice better. I joked that Avery would be awake and playing for Daddy and then he would hand him to me and he would just fall asleep.

Every Tuesday I would bake a cake or cupcakes to celebrate his birthday. My life is still lived in Tuesdays and Thursdays. Every Tuesdays he is born again, every hour I remember what I was doing. Every Thursday he dies again. Every minuet what we were doing.

They moved his surgery date to the 19th of May because he was doing so well. He was the units little pride and joy. Super laid back and rarely cried, which was extremely unique for a gastroschisis baby. Because they can't be fed, they cry a lot due to their hunger pains. Nurses joked that if Avery wasn't so cute and they didn't go look at him all the time they would forget he was there. He just slept and would wake up and just quietly study the ceiling. Then fall back asleep.

The 19th he came in out of surgery with no problems. Dr. Helmrath met with us to tell us he just removed those two tiny parts of dead bowel and his appendix to allow room in the belly. And also so if there were any problems in the future we would know that it wasn't that. There were incidental post-surgery things that popped up, but in the mean time we were just waiting for Avery to poop so we knew that things were running from point a to point b and we could start the feeding process.

He pooped on Friday the 22nd and I cried. Jared celebrated. We thought it was the beginning of the end.

But that was it. He swole up again and we had to wait for his bowel to go down. We tried feeding late June and originally he took the 5mLs every 3 hours OK. But when they tried to gradually bump them up to what he should have normally been taking at his age he would swell up and throw it up. His pooping wasn't consistent either.

So they tried to do 3 different barium studies to figure out what was wrong with the bowel. It was frustrating for the doctors to see this otherwise healthy baby hang out at the hospital with his parents coming in everyday. They wanted what we wanted, for us to start being a family. The barium studies showed very little that we otherwise could notice, that part of the bowel was distended and the other part was fine. Dr. Helmrath decided that he would go in and do an exploratory surgery, bring part of the bowel to the surface in an ostomy and let the remaining rest and recover, feed the top part, place a central line and a GI tube so that Avery could finally come home and just be a GI out patient. Once the bowel had shown it was ready to go, he would just take the two tubes out and sew the two bowel segments together.

On the 12th I studied and began a spiritual fast for my son's health. We had no reason to suspect that anything would go array. Our doctors were very confident that this would be the beginning of our more normal lives. We had members from our church and work come to the hospital on the 13th to pray over the surgery. Again, of all the surgeries, this wasn't suppose to be the big one. We just wanted our journey to be closing in on the end. We were surrendering to God.