I haven’t written anything since last trip down the negative road below. My brain started flooding with scary thoughts of my son not getting any better, or even worse. I started to question whether he had cerebral palsy, neurological diseases or autism. I had practically convinced myself that there is something larger going on and his heart was just a piece of the puzzle. The dark path my mind took me on had me doubting myself, our doctors and my ability to care for my children. Postpartum depression? Maybe. Anxiety? Definitely. I stayed up late at night on Google self diagnosing myself and Finn. I knew I was driving myself crazy and the loss of sleep wasn’t helping. My mom, Jeff and friends were telling me he was okay, that other kids are fine who don’t gain weight quickly or who have some of the delays or physical manifestations I was obsessing over. As much as I wanted them to be right, I knew in my heart that something was off. I didn’t know what, but my “mom-tuition” was telling me that something wasn’t right.
After we left the NICU I had been watching Finn’s physical development closely. He has always seemed a little weaker than Asher but he had a heart condition and he was a skinny guy. He slept more, but some babies do that, right? At his two month check-up my concerns were slightly validated. He was not holding his head up like a normal two month old typically does. His weight and head circumference had fallen off their curve a bit. I had been weighing him weekly and he was gaining about 4 oz a week, which was on the low end but acceptable. I asked to be referred to PT/OT to close the gap on his physical development.
Just like when you go to bring your computer into IT at work or your car into the mechanic Finn decided to start showing off his head lift and control skills the day of our first PT assessment. Yay! I was happy to see him improving. It makes sense that he may be a little behind based on his early NICU stay and his weakness from his HCM. Our OT and PT agreed that he had a little lag but with some extra work he could definitely catch up. They were able to put my fears of cognitive development issues to bed. He clearly doesn’t exhibit any signs of autism, CP or any other neurological diseases. With a few extra exercises and spending more time at the baby gym he should be up to speed in no time.
At my weekly weigh in on 3.20.17 Finn had only gained 2oz rather than his typical 4. I knew in my gut that something was not “right” and my hyper concern was kicking in. We went to see our pediatrician and make sure we were watching him closely. Dr. Bob recommended feeding more often and adding in bottles to monitor his intake. We have a home scale so more frequent weigh ins were in order. Check back in another week unless drastic issues arise.
It was a long week. I would weigh Finn before a feeding, after each side. Forcing him to eat with bottles and a syringe. He wasn’t having it. This kiddo simply refused to take more than an ounce or ounce and a half per feeding. He was also nursing more frequently and grumpier in the middle of the night. I obliged every request but it fed into my fears that he just wasn’t getting enough milk. In a single pumping session I could get 10-12 ounces. This wasn’t a production issue, it’s a transfer or metabolism issue. I knew it.
Before our follow up with Dr. Bob I wanted to seek advice from an IBCLC. We fed, weighed and assessed my milk calorie and fat content. Everything on my end checked out. Finn didn’t have a lip tie or tongue tie. No sucking issues. Why wasn’t this baby getting the milk in his belly and what changed in the past two or three weeks? We left with some friendly advice and well wishes, not a solution.
Dr. Bob’s follow up visit on Wednesday, 3.29.17, was short and sweet. We needed to follow up again with our cardiologist (who was aware all along of all the ups and downs I was experiencing over the past few weeks). He wanted us to continue to see him weekly, however right now we should really discuss the immediate health concerns with the specialists.
Dr. Vezmar, our cardiologist was out on spring break. He wasn’t going to be back until our regularly scheduled monthly appointment the following week. Luckily, Dr. Hills was in clinic and she is a cardiologist that had experience with our case. She was able to see us immediately.
After an EKG and exam by Dr. Hills we are admitted to Children’s for failure to thrive. Malnutrition. He needed a feeding tube to get him up to an appropriate weight. Everyone kept telling me he was lucky that I was so diligent and brought it to everyone’s attention early. Children often don’t come in until they are showing significant signs of failure. He never lost an ounce but the direction we were going wasn’t the right one. I went home to pack up a bag and soon it was back to our life of living at the hospital.
Walking down the halls at Children’s for our outpatient check ins always brings mixed emotions. I am usually happy that we don’t live here anymore, but sad that we are such frequent guests. This time we were walking back in to stay again. It was surreal. The feelings flooded in. Anticipation, anxiety, sadness, fear, relief. Yes, relief. This time there was an overwhelming sense of relief coupled with all my other negative emotions. Relief that he would be monitored. Relief that Dr. Google wasn’t going to be my daily consult. Relief that my son would, without a question, get the nutrition he needs to get healthy once and for all I hope. I hated the ideas of monitors, nurses, feeding tubes and sleeping on a futon again but I loved that he would be taken care by professionals. No more sleepless nights wandering the internet trying to self diagnose every little symptom I observed.
Upon arrival we started tube feedings coupled with oral feedings. We assumed that he was getting one to one and a half ounces of breast milk directly from me so we added in another two ounce per feeding every three hours round the clock. Again, that relief feeling was settling in. It wasn’t as scary this time. I knew how to manage the schedule with Asher. I knew when to expect doctors to round and I knew that he would be reviewed daily. Once we get this kid up to his expected weight and feeding properly we are going home. This will only take a few days, right?
Genetics came to visit right away. They informed us that his preliminary carnitine results were in and it was extremely unlikely that he had a primary carnitine deficiency. What a huge let down. Our best case scenario is now off the table. A new genetic physician, Dr. Mendelson, who wasn’t very familiar with our case spent a lot of time looking at Finn and asking me questions. She had briefly reviewed our case but wasn’t in the weeds with the details. She pretty confidently ruled out any syndromic issues based on his physical presentation, reiterating multiple times what a beautiful baby he is. I couldn’t agree more! During her assessment she casually mentioned his reflux. Almost as if we knew it was there. Reflux? He didn’t spit up or cry at feedings. Interesting. We adjusted his bed to be at an incline and he immediately perked up. Less agitated and clearly more comfortable.
Okay. So no to carnitine being our problem, yes reflux is now on the list. That doesn’t explain everything. Could silent reflux be the reason he doesn’t want to transfer milk? It was unlikely since he didn’t seem too uncomfortable for the past few weeks. Genetics informed us that they were submitting a request to the hospital to do Whole Exome Sequencing. Now that Finn is showing signs other than just the HCM, we have reason to believe this is something in the rare to extremely rare category. Unfortunately even this test doesn’t guarantee that we have an answer. There are always new genes being discovered so we may have to try again in a year from now to see if they can pinpoint why my baby boy’s heart is the way it is.
For our immediate goal, we need to focus on getting Finn to eat on his own. With the support of his feeding tube he is gaining the appropriate weight, however we want him to do it on his own. Occupational therapy, speech pathology, doctors and more are working with us to find a solution. Yesterday we did a swallow study to see if he was aspirating liquid. Before the study I asked about being able to confirm whether or not he has reflux from the observation. The speech pathologist who specializes in feeding said that they very rarely see reflux on a swallow study. It would have to be pretty significant and timed perfectly. Reflux isn’t usually continuous and may not happen in the first few swallows that we are watching. Well, Finn’s reflux was that bad. We clearly saw him swallow and an immediate reflux all the way back up without coming out his mouth. This whole time every sip he was taking was coming back up and hurting him. No wonder he doesn’t want to eat. Poor baby!
We aren’t sure if the reflux is the only contributing factor to his weight gain but we are treating it and continuing to look at what else could be hurting his ability to transfer milk. The days are long. Testing every bottle, Zantac, Omeprazole, different positions and more. Nothing seems to be working so far. With the increased volume in his feedings he is becoming more and more uncomfortable. My skinny yet happy baby is transitioning into a well fed crab. His smiles have been replaced with grunts and groans. It breaks my heart to know that his food is hurting him. He needs to eat and gain weight but each feeding is putting him in a lot of pain. Hopefully the meds will kick in soon and it will solve his reflux. Maybe if that subsides he will be capable of taking on more from his oral feeds. I guess for the time being I will be grateful that he is getting the nutrition he needs to be strong and smart, even if it is painful for all of us.