Meet Reagan!

I'd like to introduce you all to a truly amazing little girl, Reagan. Reagan is 13 months old, and is about to be famous - she had the largest hiatal hernia her surgeon had ever seen in a child OR an adult. Seven times the normal size!

Reagan was born 5 weeks early, and had to spend the first few weeks of her life in the hospital. However, she progressed quickly and was a perfectly happy and healthy baby, home with her wonderful parents in short order. While she was on the small side, that was to be expected given her early arrival. At her 7 month check-up, however, her pediatrician became concerned as they found that she hadn't gained any weight in 2 months. Something was definitely up. She had a follow-up X-ray which revealed that she did indeed have some troubles - her stomach and part of her intestines were up in her chest cavity, rather than in her abdomen, where they belong! There were 3 possible reasons for this:

1. A hiatal hernia. The hiatus is the opening in the diaphram that allows the esophagus to pass through the chest cavity into the abdomen. If this opening is large enough, contents from the abdomen can make their way into the chest cavity.
   
2. A Morgangi's hernia. This is a condition where there is a second opening in the diaphram, allowing abdomen contents to get into the chest cavity.
3. A stretched or loose diaphram, which would allow the stomach to make its way into the chest.
   

The only way for the doctors to make a diagnosis was surgery - they'd go in laproscopically to see which of the 3 options was causing the problem, then they'd fix it.

The good news was that Reagan was otherwise a very happy and healthy baby! While her parents were of course worried and nervous about her upcoming surgery, Reagan was doing very well.

Surgery was this August, and it was successful! I can't possibly do the story justice, so I'm including the email written by Reagan's parents the day after her surgery:

First of all, thank you to everyone for your kind thoughts, words, and prayers. It has meant so much to Melanie and I and we feel so lucky to know how many people care about Reagan.

For those of you who are looking for a quick update:

Reagan endured 12 hours of surgery yesterday but the surgery at this point appears to be a success. It appears now that she is alert and in some pain, but doing very well and they intend to move her to the inpatient floor later today.

For those of you who prefer all the detail, here it goes:

Reagan had her last real formula bottle at 9PM Saturday and was restricted to clear fluid after that. We were admitted to the hospital on Sunday at about noon. We were placed in a single inpatient room. About mid-afternoon, they placed an IV to keep her hydrated and given a tube in her nose. For 4 hours she was given a solution called "Go Lightly" to clear her bowels. She tolerated everything surprisingly well. Very little crying, she seemed content playing quietly and watching a Baby Einstein video over and over again. She fell asleep at about 8PM and actually slept through 2 enemas and tolerated the third with little crying. She then slept through the night in her Mom's arms. Needless to say, Melanie slept very little. I was able to get a few hours here and there.

At about 6:45 AM the nurse took us to the pre-operation holding area. We met the entire surgical team, had the procedure explained to us again, signed some releases. As they were reviewing the risks again, I have to say we were both pretty upset. At almost exactly 7:30 AM a young anesthesiologist asked us if we thought Reagan would prefer to ride in the bed or be carried into surgery. Thinking I would be able to carry her, I said, "carried". Well, to my surprise and Reagan's the doctor held out his arms, I gave him Reagan and off she went. Very quickly and with little crying from her that we heard. Obviously a hard moment for us.

Children's Hospital is amazing about how they plan for the support of the parents and not just the children. We were walked into the waiting room by a very friendly nurse named Sheila. It was Sheila's job to check in with the Surgical team every 60 to 90 minutes and give us an update. She took our cell phone numbers and we were able to spend our time in other parts of the hospital. There is a very nice garden area within the hospital and we sat there, read, talked, and ate from about 8AM until 1:30PM at which point it started raining. We then spent some time sitting in the cafeteria before moving up to the waiting room at about 4PM. We had constant updates telling us she was doing really well, vital signs were very strong, surgery was progressing well.

After about 9 hours of hearing everything was going well, no issues, we started to get a little concerned. We had been told the surgery would last 4 to 10 hours and we were quickly approaching the 10 hour mark with the nurse telling us they still did not have a timetable for finishing. At about 5PM, the surgeon himself came out to talk to us.

We learned that Reagan did in fact have a hiatal hernia. The surgeon said it was the largest he had ever seen in a small child and bigger than most of those found in adults, 6 to 7 times its normal size. You could literally put your entire fist through the opening. Her stomach, small intestines and some large intestines were in her chest cavity. Further the stomach was inverted and backwards. He said it took them 8 hours just to move everything back to where it was supposed to be and repair the hole. He was unable to learn if it was congenital or developed after birth. It was so severe that he was very concerned it would be very likely to re-occur.

As a result, he wanted to use a gastronomy tube, G-Tube, to anchor the stomach down to the abdominal wall and give the surgery adequate time to heal and give her the best chance of avoiding a reoccurence. This small tube passes from her stomach to the outside of her body, so a side benefit is that they will probably use it to give her supplemental night feedings to help her growth catch up. She will have this tube for at leat 6 months, maybe as long as 1 year. It will extend long for about 12 weeks and then they will trim it back to be close to her skin. Our pediatrician called us later in the night and said that they were actually quite common for other reasons and no big deal. The pediatrician has many kids with G-Tubes. That being said we were expecting to leave here with all this behind us, but I am sure this will mean some extra precautions and follow-ups.

After explaining this to us, he went back into surgery, did the Nissan fundiplication, attached the G-Tube, closed her up and finsihed about 7:30PM. She was moved to the ICU, stabilized and we were finally able to see her at about 9PM. They had removed the breathing tube and she was breathing completely on her own, she had a tube in her nose to collect stomach fluids. She had an IV in each of her feet and all the electrodes stuck to her body to monitor her vitals. She has 4 laproscopic incisions during the surgery and the hole for the tube, so a total of 5 small openings. They will scar, but likely fade over time.

When we first saw her she was still asleep and on morphine for the pain. Very peaceful looking. By about midnight I would say she was aware we were there but quite sleepy. By this morning I would say she is completely alert and aware of her surroundings. Unfortunately that means she can feel some pain and has been quite uncomfortable this morning. The morphine helps.

So we are very happy to report the surgery appears to be successful, they just took the tube out of her nose as I was typing this. We will be moved to the inpatient floor and the room she will stay in for the rest of her time at the hospital later this morning. She is definitely in pain, as you would expect, but that should improve over the coming days. Given her young age she should heal very quickly. We have no timetable as of yet for when we will be leaving, but will try to share updates when we can.

I expect the next couple days will be hard as she struggles with the discomfort, becomes frustrated with the wires attached to her body, and begins to feel up to some playing. At some point she will also start feeding again which I expect will take some getting used to.

This experience has given us both a new appreciation for doctors, nurses and surgeons. The amazing work they do and how friendly most of them are is such a gift. Children's Hospital is really an amazing place. We feel so lucky to live in the Boston area and have access to such amazing resources. Being around here, it is obvious how many people are not from the local area and the families do not have the close support we have. In doing some research about our stay, I did learn Children's Hospital has purchased a mansion not far away which they will be converting into a home for out of town parents. Many of you have expressed interest, so here is the link: http://www.chtrust.org/nationalruns/default.asp?Page=kentstreet08.

Thanks again to everyone for everything. All your support has really helped us.

Three months later, and Reagan is doing incredibly well - at her last check-up, she had made her way onto the weight chart for the first time in her life! Woo Hoo! It will be a while yet before her "button" is removed, but both she and her parents are adjusting very well. It's a thrill for me to be running for both Lauren and Reagan, two amazing success stories from Children's Hospital. I know that Keith and Melanie, Reagan's parents, are looking forward to being where we are now - surgery a distant memory, with a perfectly normal little girl living life to its fullest. All thanks to the amazing doctors, nurses, and administrators at Children's Hospital. It's almost eerie reading Keith and Melanie's thoughts - their experience was so very similar to ours, and their feelings toward Children's echo ours exactly. I'm incredibly thankful to have the opportunity to be associated with such an amazing place through their Miles for Miracles program.