Hirschsprung's Disease...

Continued from yesterday...

I sat in the waiting area totally calm. I figured there had to be some medication to help her and we would get it and be on our way. We talked with the doctor for 20 minutes and at the end of the conversation he named two conditions that could be the cause of all our suffering. He quickly did a test and ruled out one of the conditions. The test for hirschsprung's disease was slightly more invasive. He knew we were from out of town and he assured me we could get right in. They directed us down to lower level of the hospital and sedated Hallie for the test. The nerves started to set in - what kind of test requires a 4 1/2-month-old to be sedated?? They didn't give too many details about the test before and it was probably a good thing. Once I learned what they do to test I felt so bad for our little girl. They sent us on our way and told us they would give us a call in a couple days to give the test results.

The first thing I did when I returned to my parents house was search the internet for hirschsprung's disease. Although this was very informational, it was a bad idea as I read about all the complications that arise from the disease and some of the treatment courses. Generally speaking, people with this disease are missing the ganglion cells in the lower segment of their colon which means the colon doesn't contract in that segment to push stool through. This causes extreme pain and blockage where the segment stops working and causes the colon to be distended. And it's genetic. I continued to read webpage after webpage concerning the disease and after two days I thought there is no way our little girl has this and I convinced myself the tests would come back negative. I returned to Rexburg on Sunday and the next day I got a call from the lab. She had tested positive for hirschsprung's and I was informed someone would be giving me a call back from the hospital to schedule her surgery. My mind started feeling cloudy. I had read so much information already, but I didn't really process it because I didn't think she had it (although she had 80% of the symptoms; slowing growth, distended stomach, extreme pain, irregular bowel movements, constant vomiting, straining to poop, I convinced myself there had to be a simpler answer!)

I immediately went back to the internet and did more research. Once again - I wasn't finding a whole lot of positive feedback and it was scary.

The surgeon's office called to set up the surgery and scheduled it for two months away. Oh, how I would've loved to have it sooner, but we needed the two months to prep her colon before doing the surgery. For starters she could have absolutely no food besides breast milk/formula, no starting solids yet. Three times a day, I had to administer an enema and drain her bowel. We had to do this for two months to get her colon back to a somewhat normal size and cleanse it daily. This was a messy and frustrating process. And every day that I wanted to quit, I was reminded of the doctor's counsel; if we could prep the colon sufficiently, we could eliminate the need for a colostomy. I would stand on my head for days on end to avoid a colostomy.

I was amazed at how different our child was just by draining her bowel daily. It's as if the constant pain had been relieved and we would only have problems when she tried to poop (it was still painful.)

That two month waiting period was a state of change for our family. Steve graduated from college. We packed up and sold our home and moved all our belongings to a pod in Milwaukee, WI. We spent time looking for a home in Milwaukee and finally returned to Boise for her surgery.

We arranged to stay in the Ronald McDonald house (an amazing service that I can't praise enough) just across the street from the hospital. We arrived the night before and tried comforting a screaming child who was starving and couldn't have anything but water before her surgery. It was a painful night and we were a ball of nerves. The next morning we checked in and waited for our number to be called. They wheeled her back and we nervously sent her in the care of several loving nurses and a surgeon. We weren't prepared for just how long the surgery would be. After an hour we got a little anxious but calmed our nerves with a game of Settlers of Catan with my parents. Another hour. Another hour. We were more than nervous and finally asked and they informed us they were still in surgery. Another hour passed and even another. Finally the surgeon came in (just like every medical drama) and had nothing but good reports. We asked him a lot of questions and he described the surgery in detail (Soave endorectal pull through procedure) and in one of his answers he talked about taking her appendix out. We were a little surprised and he thought he had mentioned it before - just one less thing we had to worry about later on in life. She was in recovery and doing great.

I can't describe the amount of relief and gratitude that washed over me in that moment. The next few days are a blur. She stayed in the hospital for four days recovering. Hallie came out of surgery looking nothing like herself. She was so swollen and puffy - she did not look like our child and we couldn't hold her for days. Each day we showed up we were relieved to see her a little more like herself and we loved hearing the rave reports from the night nurses. My parents visited often and Steve and I were at the hospital from morning until night. At the end of the day we would walk back to the house and crash and do it all over again. I was informed she would only be able to tolerate breast milk/formula for the next two months and they would really prefer it to be breast milk. So I pumped every feeding for days to keep my milk supply and I was happy as a clown when I could just feed her again! Before long we had been discharged and went on our way. Aside from some rectal stretching (which we had to do for 18 months with rods that increased in size) and a fairly strict diet, she was a normal happy baby. Really, a brand new child to us. I remember the first two days just watching her, waiting for her to start screaming and she never did. My parents and siblings all commented how weird it was to have her so happy. And she was happy and comfortable.

We did several follow up appointments and the surgeon was nothing but positive with all her progress. What a blessing. In all our doctor's appointments I've seen many kids that weren't as lucky or didn't catch it as soon. Hallie's was severe enough that we recognized it when she was four days old, many don't realize it for years and live with a tolerable amount of pain. I can't thank that doctor and surgeon enough for hearing the pleas of an exhausted and depressed mom looking for answers. And although our child's behavior changed immediately with surgery, the effects on me (and Steve) lasted much longer. Some of those effects created scars in both of us. And in all seriousness, at the time I thought one child was all we would have.

I remember running into a friend a couple years after leaving Rexburg (he had been Steve and my boss and witnessed the people we became after our child was born) and he noticed I was pregnant. He laughed and said, "I have to tell you, I honestly didn't think you guys would have any more kids. The last time I saw you, you were not in a good place." And he's totally right. We weren't. It changed us and we grew leaps and bounds from this experience and more than anything I realized we are all granted the strength that we need to handle the situations placed in front of us. Even though we will struggle to get through it, we come out on the other side and better version of ourself.