One Step Forward, Two Steps Back

We haven’t had a good day since we have been here. It seems that our goals are a moving target. Initially, we just needed to get his weight up. Then, we had to problem solve his ability to eat. Now we have a new obstacle. 

Yesterday, very early in the morning, Finn was fussing and seemed “off.” It wasn’t during his typical time, feeding or immediately after. It was different. I asked the nurse if she agreed and we called for the doctor to come take a look at him. Before you knew it we had labs, a nasal panel, x-rays and an echo ordered. The team definitely had concerns. He was making a soft squeaking noise when breathing, his eyes and nose were all red and he looked uncomfortable in an unusual way. Not what we were seeing previously. At this point he wasn’t taking his pacifier and no longer coming to the breast at all. We saw retraction with his breathing and nasal flares.

Our doctor said that this acute change could be due to multiple things. He could be aspirating his reflux, have a virus, pneumonia or a significant cardiac event. None of these were great options but we had to investigate them all immediately.

Results trickled in. First the x-ray told us that there may be some disturbance in his lungs. Nothing that we can fully attribute the way he was acting to. Next, labs came back. Finn had an elevated white blood cell count, but we don’t know why. Then Dr. Rios, a cardiologist, came in to observe his echo. It didn’t appear that there was any change (thank goodness). My biggest fear was that his heart was getting worse and that was now ruled out. Later in the afternoon we finally got the nasal panel back. We had our cause, at least one of them. It sounds benign but to a cardiac kid it is a major set back. Rhinovirus. The common cold has hit our hospital room and drastically affected my poor little meatball.

At this point we had already had him on oxygen to help him breathe. It was important that we adjust his feedings to make everything easier on him. Instead of three ounces every three hours, we switched him over to a continuous drip so his reflux wouldn’t flare up as much. Since he isn’t capable of oral feeds the schedule and practicing eating goes out the window.

Yesterday was tough. We had previously made progress in getting him to gain weight but no positive changes in getting him to take feeds on himself. Now, we are moving backwards. He can’t take any nutrition orally and we have to wait until he is feeling better to start over and keep trying new techniques. To say I am frustrated, sad and feeling hopeless is an understatement. We already didn’t have the trajectory I had anticipated and now we are going the wrong direction completely.

Asher went to Amma’s to play and Jeff was able to come down and spend some quality time with Finn. Unfortunately we are back to the man-to-man coverage with the boys most of the time. I miss being with my big but don’t want to abandon my little. It’s so hard to split your time, effort, love and emotions in this situation. We are trying to make this as painless as we can for Asher but he clearly knows something isn’t right. He keeps telling me that he misses his little brother. The other day he begged me to bring Finnegan home. I am sure he not only wants his baby home but also his mommy to be there with him all the time. Heart breaking in so many ways.

The evening doctor stopped by to check on us and I asked some questions. My main one being what is our new goal? Our previous goal was to get him to put weight on, check. Then it was to get him to take oral feeds, we were working on it until this setback hit. Now what were the signs or steps we needed to take to get to the next or new goal? I was devastated by her answer. A cold isn’t fun for anyone and can take weeks to clear. For a cardiac kid it’s even worse. She said for now, we just need to keep him calm, comfortable and rested until the cold passes and then we can start back at our goals. Weeks? She told me that I need to be looking at our hospital stay in terms of weeks, not days any more. We are on hold until things get better. I cried. A lot. Tomorrow starts my last full week of maternity leave. We don’t have weeks for me to be here with my baby. I can’t leave him here and go back to life like it’s normal. I just figured out how to manage things as they are.

Early this morning I woke up to the x-ray technician draping a lead apron over me. Another x-ray clearly wasn’t a good sign for my little man. His nurse informed me that she thought she could hear some changes in his lungs and wanted them checked out. These clearly weren’t the kind of changes I would want to be happening. Then, the respiratory nurse came in with a bigger cannula. We are upping his oxygen flow. Also not the direction we should be going. The signs that we are getting better is taking things away, not adding them. Shortly after all of these morning developments we weighed Finn. He only gained .06 ounces. Also another bad sign. He should be gaining an ounce a day based on the volume we are giving him. The nurse assured me that he has to work harder to breathe and could be burning more calories with his cold. We will see what the doctor says. 

As I sat next to my sleeping baby writing this update he started to make some uncomfortable noises. He was gagging and coughing. His face bright red and his eyes looking at me as if he were trying to scream “help me!” He started spitting up a bunch of mucus. The nurses rushed in to suction as much out of his nose and mouth. He looked so scared. I just want to help him and there is nothing I can do. All of this is really taking a toll on him. Its clear.

I can see our cardiologist from the window to the hall. Hopefully she has better news for me right now, but I don’t suspect so the way our morning has been going. Fingers crossed we change directions. Soon.

April 2, 2017