Sunday, May 1, 2011

Not What We Expected

The previous post explained what they expected was wrong with Carter. Once he was here, it was a whole new diagnosis. Later, we were informed by a geneticist that Carter has what is known as OEIS complex. This collection of defects is very rare, and is estimated only to occur in 1 of every 200,000-400,000 pregnancies. I'll break down this malformative complex for you. O is for omphalocele. An omphalacele is a sac that protrudes from the umbilical cord and usually contains pieces of organ and bowel. Carter's only contained a small piece of bowel that isn't necessary. E is for exstrophy of the cloaca (usually the bladder is on the outside of the body, sometimes inside out and split apart). We were very thankful that Carter had no exstrophy! I is for imperforate anus. Carter's anus never formed! S is for spinal defects (usually spina bifida). Carter had a tethered cord, not true spina bifida. All in all, we have a very mild case of OEIS, and it helped that Carter was 8lb 14oz at birth!

The first time we saw Carter was in the UAB NICU before he was transported to Children's for surgery on January 12th. Carter was a pretty amazing "whimpy white boy" and only had to be put on the ventilator for surgery/anesthesia purposes. His first surgery was performed by Dr. Chong and his general surgery team. During this surgery, the removed and repaired the omphalocele and gave Carter a colostomy. A colostomy is where a small piece of colon is brought to the skin in what is called a "stoma" and then a bag goes over it to contain his poop. The colostomy worried me for a long time, because it seemed like it was going to be hard to maintain - but as the nurses promised, we got the hang of it, and now it's routine. Carter came through surgery wonderfully, and they let my parents and Josh take me over to Children's to the NICU to see him that night. He was on the ventilator to recover, and sleeping soundly. The next day we met our neonatoligist, Dr. Coghill, who happens to be the director of the NICU. He explained to us how Carter was recovering well, and told us about all of the tubes he was connected to and what they did, and gave us an outline of the plan for Carter. Then he asked us if we'd held him yet, to which we replied "No." His exact words to our nurse were, "Let's make that happen today. They need to hold him." So shortly after that we were holding our sweet boy for the first time!

Carter was weaned off of the ventilator in a few days, and the next big step was to start eating! I think he was a week old before he ever ate... which stressed me out terribly. Here's a picture of our first time feeding Carter :)

Carter started running fever on January 24th, the day before he was scheduled to have his tethered cord release surgery. He had a little bit of reflux between his bladder and bowel, which they thought would cause multiple urinary tract infections. So, our urologist, Dr. Joseph, decided that a vesicostomy would keep our number of UTI's down and help Carter's bladder empty better. A vesicostomy is where they bring the bladder to the skin in a stoma (like his colostomy). On January 25th, Dr. Joseph performed his surgery, in hopes that it would keep Carter well enough to let neurosurgery do their thing soon. He did great and didn't even have to come back on the ventilator! As soon as his UTI was cleared up, and Dr. Joseph gave a thumbs up, Dr. Wellons from neurosurgery got us on his schedule for surgery. Carter's cord release was on February 2nd, and again, he recovered beautifully, and came back on room air. This surgery made Carter a little more uncomfortable than the others, since he had to lay on his side for a few days. He handled it well, though, and we were able to hold him in no time.

On February 4th, they transferred us to the 5th floor to what is referred to as "The Cube." It's four spots and still full-time nurse care, but was a major step toward coming home. On February 7th, the discharge nurse came by while I was visiting and asked me if I wanted to room in with Carter that night, that she had an open room. Josh was back in Montgomery at work, so I was freaking out trying to figure out how I was going to make it work! I went back to the Ronald McDonald house and frantically gathered as much stuff as I could, and scarfed some supper before I went back to Children's to care for my sweet boy with only limited nurse intervention! It was a fun night, waking up every three hours to feed Carter (even though he was still asleep) and change his diaper. The next day my mom brought Josh up and we spent the day waiting for all of the doctors to sign off on Carter's release, and getting all of our follow-up appointments scheduled. It was so crazy to think that after a month we were finally going to get to take him home! Mom went back that night and cleaned our house for us... it was a mess from our running in to grab this and drop off that, but not actually living there. The discharge nurse came by later that night and taught us how to change Carter's ostomy, and we even got to do it for the first time. Teamwork is the key!! Josh and I learned quickly to work together on that. The next morning another discharge nurse came by to go over CPR with us and to take us down and get Carter installed in the car correctly. Here's a picture of Carter, waiting on his daddy to get the car!

That marked the end of our first hospitalization. We had many stressful days and sleepless nights during that first month. I cried alot of tears, and Josh did alot of consoling. So many people prayed and God showed his mighty healing powers through Carter. We are so thankful for all of the prayers, flowers, gifts, and kind words that our family and friends offered. I hope to keep this blog pretty current so everyone can keep up with Carter as he grows!

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