An Uncommon Diagnosis

For the first time in Sophie’s life, she was out of the Intensive Care Unit!

She was now going to finish recovering from the second heart surgery in a recovery wing. This recovery would include monitoring her incisions and blood pressure, weaning her off of the heavy medications and sedation that she had been on for several weeks, and introducing her digestive system to full feeds.

Since she was born Sophie did not have enough energy to eat orally or even to learn how to suck. (The desire to suck is a natural instinct in babies, but is a learned skill.) She was fed from an NG tube from day two of her life and was only given small amounts of milk since the discovery of her heart condition. Now in order to go home she needed to be able to digest a sufficient amount for her to grow. She didn’t need to eat orally but if she didn’t we would have to learn how to insert the tube and feed her through it. Sophie was put on a continuous feed through the NG tube. She was slowly fed milk every minute of every day with the mindset that if she is able to handle this then she will be able to handle bolus (a large amount at one time) feeds.

Having Sophie moved out of the ICU was exciting and scary for us. We found out just the day before she was moved that we were now supposed to be her primary caregivers. A nurse would also be looking after her but she would be helping 3 other patients too. So we could/needed to spend the night with her now. However, in order to keep our room at the Ronald McDonald House one of us had to stay there and since Joshua’s mom and sister were moving us we would have to take turns staying the night with our little girl. It was a bit nerve racking to have to spend the night in the hospital and not be able to do it together, but we were also excited.

First snuggles with Daddy!

The recovery rooms were more private than any other rooms Sophie had been in. They were closed off with a door and had their own bathrooms with a shower, bed, and a recliner that turned into a bed. We decided that I would spend the first night with Sophie. Of course there was not much sleep with all of the machines beeping and the nurse checking periodically but nothing unexpected. I was so glad to finally stay the night with her. Joshua spent the next night. His night consisted of continually having to clean Sophie up and replace her bedding because she kept throwing up…

She continued to throw up for several days but the doctors attributed this to the weaning off of the drugs. Besides this her recovery was going great! She was more awake now and she passed the hearing test. They also found that her vocal chords were not damaged by the heart surgery (one of the greatest risks)! The only thing keeping us at the hospital was feeding and since this was the case they decided to take Sophie off of all the monitors for the first time since she was born! We were so excited and a bit nervous. For almost two months we had monitors telling us if she was experiencing any difficulties. Now it was up to us with the help of the Holy Spirit. We were one step closer to going home!

Joshua’s mom and sister finished moving us and came back to the hospital. Now Joshua and I could both stay the night with Sophie. Going home felt so close! We talked about plans for our new home and about how much time we would have left with Joshua’s mom and sister there before they had to leave. We daydreamed about relaxing in our own bed with our little girl and eating home cooked meals again. However, Sophie kept throwing up.

After a long weekend I requested to see the doctor. “I heard it said that insanity is doing the same thing over and over and expecting a different result. Sophie keeps throwing up and yet you just keep giving her more food continuously. When she was first born she would throw up if her feeds were increased by too much. Even 5 ml less would make a difference,” I told the doctor. They decided to perform three tests: a Barium Swallow, an Upper GI, and an ultrasound of her intestines. They were looking at several different causes for her throwing up. Some which would require surgery to resolve and others that didn’t. We were praying for the latter.

We were so nervous as we watched the tests being performed. We watched the technicians and specialists hoping they would give us a clue if they found anything. While they were conducting the last of the tests I had a feeling it was not as we had hoped. We anxiously waited in Sophie’s room for the results. “Your daughter has an uncommon condition called pyloric stenosis. The muscle around the pylorus valve is thick and is not allowing food to pass from her stomach to her small intestine. This can only be fixed with surgery. We would like to do the surgery tomorrow.” We were both crushed and relieved. We couldn’t believe our baby girl would have endure another surgery, but were thankful to know the cause of her vomiting.