Our Hirschsprung’s Baby

The past six months have been a roller coaster ride. The Lord tested us, gave us strength and humility, caused our trust in Him to increase, and He was faithful to deliver us. Though most of this happen in the last six months, it really started a year and a half ago when our first child was born.

The First Big Scare

In May of 2013, God blessed us with a son. His birth was uneventful and he appeared to be a strong healthy baby until we realized that he didn’t want to eat. For two days we tried every trick in the book to coax him to breastfeed, but nothing worked. I started pumping and we fed him using a tiny finger feeder. Finally he started to eat! But we still didn’t know why he wouldn’t breastfeed. Soon he started vomiting, which was the scariest thing to see a newborn baby do. At five days old we took Vince to the doctor because there was another problem, he hadn’t pooped! At this point we already knew what Hirschsprung’s disease was and we were fearing the worst. The doctor did a rectal exam and POP out came all the poop! Oh, how happy we were that it wasn’t anything more serious.

Vince was doing great for the next two weeks, but his poop became thicker and thicker until we had to help him go using a rectal thermometer. We kept that up for awhile, but we knew that he should be able to go on his own and gradually stopped. He would go on his own every once in a while and we were convinced that that was just how he was. Vince was very happy and so it was hard to think that there was something wrong with him, but I always was thinking and worrying about him. This went on for about one year. It was so hard for me to focus on anything else because I was always worrying about him. I tried to convince myself that everything was okay since he was happy, but I couldn’t.

The Second Big Scare

When Vince was 10 months old he went two weeks without pooping. We went to the doctor, who told us to give him a laxative. We did and he started pooping again. It wasn’t until Vince was 13 months old that he went two weeks without pooping again, but this time he started vomiting. I knew this was serious since he didn’t poop very often and we went to see the doctor right away. Again he told us to give him a laxative and see what happens, but Vince didn’t want anything other than milk straight from me. We called the doctor who said to give him an enema, but we decided instead to go to the hospital in Ephrata. There they gave him an enema and NOTHING HAPPENED! They sent us home saying that he will poop eventually. We went home and gave him another enema and he finally pooped! Yay!

Three days later Vince started vomiting again. We went to the doctor, who sent us for x-rays and then told us to go to the Hershey hospital where we would be admitted. After hearing the doctor say that I felt relief. Relief from a whole year of worrying about Vince not pooping often and knowing that we were going to finally figure out what was wrong with him.

The Diagnosis

At the ER in Hershey, they asked about Vince’s life history, took blood and urine samples, and put and IV in him. They weren’t sure he had Hirschsprungs because he was so happy and his belly wasn’t noticeably distended, but once I told them that it was in my family they started to believe that he did. The next morning they preformed a barium enema and almost immediately they saw that he had Hirshsprungs. His intestine was four times its normal size and was starting to deteriorate. The rest of the day they gave him enemas to clean him out and the next morning they did surgery to give him a colostomy.

Hirschsprungs?

Hirschsprung’s disease is genetic. There is an error in the DNA which prevents the ganglion cells, which move food through from your mouth to your rectum, from making it the whole way to the bottom. Sometimes they stop in the small intestine or somewhere in the large intestine. The ganglion cells help the intestine to relax. Without these cells the intestine stays constricted and tight. Depending where the cells stop can determine if any poop can move through or not. Only the last six inches of Vince’s large intestine didn’t have these cells, allowing soft poop from milk to pass through, but once he started eating solids it got stuck inside of him. They gave Vince a colostomy to allow his swollen intestine to shrink back to its normal size. They taught us how to take care of it and we went home.

Oops!

Three weeks later Vince was playing and fell on his belly. I consoled him and set him down to go play again, but he kept crying. I checked his colostomy and it was huge! I immediately took him to the emergency room. We were admitted and they did surgery the next morning to fix it. He had a loop colostomy and it prolapsed so this time they gave him a regular colostomy. The reason it prolapsed was because his intestine was so swollen that they had to leave the hole fairly big, and since his intestine shrank back to its normal size the hole was now too big making more of his intestine come out or prolapse.

The Major Surgery

Three weeks later we were back at the hospital for Vince’s pull-through surgery. They would take down Vince’s colostomy, cut out the last part of his large intestine with the missing ganglion cells, and reattach him at the rectum. The surgery went great, just as planned, but Vince wasn’t recovering well. He was in more pain than his other surgeries and his belly kept getting bigger. They tried to take blood samples for testing, but no one could find his veins! Two days after his surgery we were moved to the PICU. They put in a central line and the next morning they did exploratory surgery to find out what was wrong.

Will He Make It?

We were scared. Going to the ICU? That’s where my mother spent three months and she didn’t make it. I remember telling Rodney that maybe God wants Vince with Him in heaven. After Vince’s surgery the surgeon told us what he found. Vince was full of infection, a blood infection, sepsis. They washed a lot of it out of him and even though his reattachment incision was not infected they gave him an ileostomy as a preventative measure. Our heart’s sank. We were allowed back into the PICU to see him and everything imaginable was hooked up to him. He had about ten medicines going through his IV, a breathing tube, a catheter, monitoring leads and cuffs, drainage tubes out of his belly, and the ostomy bag. My mother looked very similar while she was in the ICU, so I knew what he was going to look like and it wasn’t a big shock.

 

Waiting…

We spent that entire week in the PICU, waiting. Waiting for Vince’s body to heal, for the antibiotics to help his body kill the infection, for the swelling in his belly to go down so his lungs could fully inflate and he could breathe on his own without the breathing tube. We held his hands and talked to him. He was sedated, but he could hear us. At the end of that week the doctors started slowly weaning him of the ventilator and the sedatives. It isn’t a pretty process. They switched him to some oxygen and weaned him from that also. They lowered the sedatives more and Vince became very irritated. I don’t think he slept for 24 hours one day. He would constantly move his head from side to side and it seemed as if his nose was extremely itchy. The nurse told us his symptoms looked like withdrawal. The doctors increased that medicine and his symptoms stopped. The particular medicine he was on is used as a sedative at high levels and as a pain killer at lower levels. He was on it for five days and became addicted to it.

 

After Vince was weaned off the oxygen we were moved back down to a regular hospital room. The next few weeks Vince slowly got better. His withdrawal symptoms caused some issues with his breathing since he would itch his nose so much, so he did have some oxygen then. The doctors kept taking blood samples and his white blood cell count was going down then jumped back up and would come down again. They gave him different antibiotics and that made the difference. Vince was more awake and would play with toys, then he started crawling and slowly started walking again though he was a little shaky. We tried to give him some food, but he refused to eat and breastfeed, so they put a feeding tube in him so his digestive system would get used to food again. This was a slow process with increasing his feeds and him sometimes vomiting. He started eating some solid food, but not much, so they decided to send us home with the feeding tube. We were to give him formula through the tube overnight and maybe more if he still didn’t eat during the day. At this point they switched the pain medicine to which he was addicted to an oral dose, and did the same thing with his antibiotic. All of his medicine we could give him through his feeding tube and at this point it was a blessing.

Going Home!

So, after 4 weeks in the hospital we were able to go HOME! This was scary. There were still lots of hurdles to jump and now we were in charge, but I know the doctors and nurses in the hospital had confidence in us. Several people say to me that they don’t know how we made it through those 4 weeks and my answer is that you only take one day at a time and you do what you have to do. There was no other option and even though it was hard emotionally, spiritually, and physically, we got through it on God’s strength.

God’s Words

When Vince was at his worst I was reminded of these truths:

We only have peace during this time because we have entrusted Vince to God. He is much safer with Him. Releasing Vince to God means we are free to cling to His Almighty hand. We can only watch and see what He will do.

Now to Him who is able to do far more abundantly than all we ever ask or think, according tot he power at work within us, Ephesians 3:20.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18

I know whom I have believed and am persuaded that He is able to keep what I have committed to Him until that Day. 2 Timothy 1:12

When God is BIG, problems are small. When God is small, problems are BIG. – James Macdonald

Sometimes God delivers us from the storm, and at other times He delivers us through the storm. -Joni Erikson Tada

Final Challenges

The day before we were discharged from the hospital Vince began to breastfeed again. This was the first time he nursed in 4 weeks! I had been pumping the entire time in the hospital. The day we went home he didn’t nurse and 4 days after that. I thought this was the end, but finally on the fifth day he nursed again and has ever since. Once we were home Vince started eating better. We gave him formula overnight for four nights and after that he was eating enough during the day that we stopped. We wanted to take the feeding tube out at that point but he couldn’t handle his antibiotic orally, so we had to wait another week until that was finished.

Vince gradually returned to normal with the exception of his pain medicine which we had to wean slowly so he wouldn’t experience withdrawal. We had to give it to him every four hours and did that for two months! His ileostomy proved more challenging than his colostomies. His poop was more runny and we had a hard time getting the bags to stick well, so his skin would get raw. That made us look forward to getting rid of the ileostomy.

The Take Down

Vince’s final surgery to take down his ileostomy happened November 10th. The surgeon told us it would be a 4 – 5 day stay in the hospital, but we were able to go home after 48 hours!!! Everything went better than perfect, and Vince’s body healed quickly. He started pooping no problem and we had to keep him from eating this time. It was hard to believe that this whole journey was over! Vince is so happy, and Mommy and Daddy are happy because we get to change LOTS of poopy diapers! Haha!

Thanks for reading our story. I wrote this all down to encourage those going through similar experiences, so please don’t refrain from asking me any question! God took care of us, and He will take care of you!