Happy Six Months Baby H!

An update on baby H's health and our family!

This newsletter is again a departure from my usual style and topics, but I felt now that H is six months old an update on his health is much needed. The past six months have been some of the craziest of my life. I have learned so much about the resilience of babies. H is amazing. He has been through so much and has shown us how strong he is! I can’t wait to watch him grow up and see where life takes him. He is going to do amazing things!

If you missed it or need a reminder, read this newsletter to see what’s been happening with H over the first three months of his life.

Follow up with Otolaryngology

In late February, H had his follow up with otolaryngology. Due to his slowing weight gain and worsening breathing the doctor mentioned that it might be time to start thinking about surgery. Since he was really borderline, she left it up to me to decide. It was scary to hear those words. At that point, I wasn’t quite ready for that and we had just switched reflux medications. I wanted to give it some more time to work and see if that would help.

Sickness

Shortly after that, L caught a bad cold. I was really, really worried that H was next. Luckily, H didn’t ever catch it. L was sick off and on over the next month (basically all of March). It’s so hard when a child is sick and having L sick while we were dealing with all of H’s appointments and health was extremely stressful. I noticed that my health was also suffering. I wasn’t sick, but my hair was falling out drastically, I was losing weight, and my milk supply was slowly dropping.

Gastroenterology Appointment

We finally had our Gastroenterology appointment. The GI doctor changed H’s reflux medication again (for a third time), referred us to the aerodigestive clinic and a nutritionist and ordered an Upper GI series to rule out any other anatomical abnormalities in H’s GI tract. She also suggested that we do the surgery (Supraglottoplasty) and have a bronchoscopy done while he is under anesthesia to check lower part of his airway for other abnormalities.

Nutrition

We had our first appointment with the nutritionist who said that H was definitely small for his age (the average size of a 2 month old at 4 months). He was propionate though (his height was less than the 1st percentile), so she wasn’t overly worried yet. She said that we needed to keep a close eye on his intake and work on getting him to take larger bottles during the day. She mentioned she thought fortifying his breast milk with formula for added calories would be a good idea. I hated the idea, but we did fortify his breast milk after with formula. In the middle of a huge formula shortage, I also, heartbreakingly, have had to supplement with a couple of formula bottles a day as my supply has really gone down and I just can’t get it back.

Upper GI Series

Around the end of March, H started to take a turn for the worse. I was convinced he was teething and getting multiple teeth in at the same time. I consulted my uncle (who is a dentist) and even almost made H a dentist appointment to see what the issue was. He was fussy, chomping on everything, drooling like crazy, and was clearly suffering. His breathing was terrible, he was having many sleep apnea episodes and was constantly coughing and choking. Several doctors and his feeding therapist all told me they saw no signs of teething after examining his mouth. His pediatrician said she thought he was just getting so uncomfortable from the laryngomalacia that he was showing his stress in teething signs. She was right. He was also now considered failure to thrive due to falling off his growth chart for both height and weight.

We had an upper GI series done to rule out any anatomical abnormalities in his upper GI tract to rule out other causes for vomiting or symptoms of reflux that weren’t actually reflux. It showed no other abnormalities. Finally some good news!

Follow up Swallow Study (VFSS)

The day after his upper GI, he had a follow up swallow study to check his dysphagia. He was so fussy, and inconsolable that we were barely able to complete the study. They were able to get him to cooperate enough to watch 11 seconds of him eating which showed deep penetration and aspiration even on thickened liquids. Not good. Since he was not cooperating they couldn’t test thicker liquids to try any purées or other feeding methods. We were sent home with a recipe for slightly thicker milk and scheduled for more feeding therapy and another repeat swallow study over the summer.

Sleep Apnea

H’s breathing started to get even worse and it was very scary. He was frequently snoring, breathing with an open mouth, and sweating at night. He also had episodes of stopping breathing and then gasping and waking up. These are all signs of sleep apnea in babies.

Feeding tube or surgery?

With H getting worse and now failure to thrive, his otolaryngologist said we really have two options. We could place a NG feeding tube and give his airway and lungs a chance to rest in the hope that it helps him grow and be more comfortable until he outgrows the laryngomalacia or until it’s clear that he won’t and the only option becomes surgery, or we could go ahead and do the surgery.

My worst fear was that he would be in the 15% of babies with laryngomalacia that need surgery. I couldn’t imagine placing my tiny baby in the hands of a surgeon at all and especially a surgery on something as vulnerable as his airway. I did my research and asked families who have been through this before there experiences with an NG tube versus surgery. I spoke several times with his otolaryngologist and his pediatrician to discuss the options. My husband and I talked back and forth for a long time.

I liked that the NG tube required no surgery, but I also new that they could be difficult to manage, required a lot of supplies, and could be extremely uncomfortable for H. It could also make his reflux worse.

The surgery came with some risks. He would have to go under anesthesia, his anatomy would be changed which could make his feeding and swallowing issues worse. There was also no guarantee that it would help his reflux at all. There is also a small change that the surgery could fail and need to be repeated down the road. But, the surgery would most likely making his breathing much, much better and solve his apnea.

In the end, we decided to have the surgery. He would also get a MLB scope done to check for any other abnormalities.

Surgery Day

The few days between when we schedule L’s the surgery and when he had surgery were some of the most anxious days I’ve ever had. I was constantly worrying about H and about if we made the right decision.

The day of surgery, H did so well! He couldn’t eat anything for eight hours before surgery. I imagined that I would have a screaming hangry baby. He actually seemed so calm and cried less than he had in a very long time. That was scary and not normal. It did make me wonder if we should have the NG tube instead, but his doctor assured me that after we got his breathing under control everything else would follow.

We got him checked in for surgery and I got a special phone that would send me updated with his progress through surgery. We got H in a small gown, took his vitals, filled out forms, and waited for the anesthesiologist and surgeon to come and get him. Everyone was so professional and nice and H was kept entertained with toys. The time came to hand H over to the anesthesiologist (he said H was the cutest baby he had ever seen and he really wanted to be the one to hold him). I watched with very tear filled eyes as they took H away down the hallway. I couldn’t move out of that room for awhile.

The surgery altogether took about three hours from when they took him to when I was called back to help him wake up. I spent most of it anxiously watching the phone for updates. When it was finally over, I was sent to a small room to wait for the surgeon. I thought for sure this meant bad news as all the other families seemed to meet their surgeon in the waiting room. I thought they had found some other problem like another form of malacia, paralyzed vocal chords, or a laryngeal cleft or something, all of which can be common in kids with severe larynogomalacia.

It was all good news! H was fine and the surgery was a success! Everything now depended on how H healed over the next six weeks. I was relieved and so excited to get my baby back in my arms.

Waiting for H to come out of anesthesia was hard. He took a long time. I think it was around an hour and a half, maybe longer after his surgery. It felt like forever. As soon as he was awake, they took me to the PACU to hold him as he was struggling a bit to come out of it. The poor baby looked and sounded pitiful. He was hooked up to wires everywhere, was clearly in pain, and just couldn’t open his eyes. He had the saddest little moan/cry ever. He finally started to wake up a bit more and his blood pressure and oxygen levels came back to normal and we were moved to the PICU for the rest of our stay.

My experience at the Children’s hospital was wonderful. The staff and nurses were amazing. One of my breast pump parts broke in my suitcase and they brought me a hospital grade pump (to borrow) with all new bottles and parts for me to have. They made sure H and I were both taken care of. The hospital family resource center made sure I had everything I needed and even sent me to Starbucks for coffee while H got some special toys to play with and a stuffy to take home with him. I also got free meals while we were there as a breast feeding mother!

H had a rough recovery. He was clearly in pain. They had him only on Tylenol which was clearly not helping much. They finally agreed to also give him ibuprofen as well. This seemed to help some. They gave us a swing to help him sleep and stay calm and that helped a lot. I held him almost all the time he was awake. He would play a little but he mostly just wanted to cuddle. His oxygen and vitals all looked good and stayed stable while he was asleep which was a big concern. He was doing well! The only problem was that he wasn’t eating much. We assumed this was probably because he was in pain. He really needed to be able to eat before we could be discharged. It took some time, but eventually he took more than 3oz from a bottle and we could go home!

He was breathing so much better already. It was so weird not to be able to hear him breathing and to see him take real deep breaths for the first time. Oddly, being able to hear him made me a little paranoid that he was actually breathing and I had to keep my had on his chest at night for the first week or so until I was satisfied that he is actually fine. He also had no retractions anymore! He was clearly feeling more comfortable (especially after the pain went away).

His feeding problems did get worse. He refused to eat after we got home. When he did take a bottle he would cough and choke almost right away. This would happen every time he tried to drink. A few times he choked really hard. I think he developed a slight aversion to the bottle. On the advice of his feeding therapist, we started him on solids and he seems to eat those fine and eagerly. As he was just 5 months old at the time, we worried that he was still not getting enough and he needed to drink milk. We finally made an appointment to get admitted for an NG tube. We first went to see his pediatrician to check his hydration levels. Surprisingly, he seemed hydrated (he was breastfeeding all night at this point—he was coughing and choking but I was desperate to see him eat and he was desperate to eat and have that connection) and he had not actually lost much weight. She advised that instead of an NG tube, we work on finding ways for him to safely take milk and focus on solids.

We met with his feeding therapist to see what our options were. She suggested we use a spoon feeder to feed him thickened breast milk that way. It worked. He would take it, but it was very messy! She also suggested we might mix the milk and purée together if he didn’t want to drink the milk. He really liked that! We would still offer the bottle first and try these other methods after he refused the bottle. He is currently still eating using this method but has been able to take the bottle better recently. He has lost a little weight, and we will have another check this coming Monday.

Gross Motor Delay

H’s physical therapy referral finally came through and we had his first appointment after waiting two months. He was assessed at Children’s and found to be in the less than 5th percentile for his gross motor skills (he has the motor skills of a newly three month old at six months). He isn’t rolling yet, doesn’t push up onto his forearms during tummy time, doesn’t sit well even with support, doesn’t tolerate tummy time well. I knew he was behind but I really did realize how behind until I saw a friend’s baby that is one month younger than H who was moving her whole body so much more than H. He was also found to have torticollis on his right side (stiff neck) and plagiocephaly (flat head). His physical therapist referred us to Early Support for Infants and Toddlers, the state Early Intervention program for children showing a more than 25% delay in one or more areas. She also gave us stretches and movements to practice with H for the torticollis. H was referred to the craniofacial clinic at the children’s hospital for a helmet for his plagiocephaly.

Early Intervention (ESIT or Zero to Three)

We are still waiting for our initial (TWO hour!!) assessment with early intervention, but we have been given our orientation information and meet with our Family Resource Coordinator this week. After reviewing the information, H likely meets the requirements for intervention in occupational therapy as well as physical therapy. We will also get nursing services as well. The wonderful things is: they come to our house! I am really excited to start his physical therapy as he is so so so ready to move cognitively and is trying so so hard but just can’t quite seem to figure out how to move the way he wants. He really wants to sit and scoot on his bottom to get places, but can’t sit independently. What he does instead is straighten his legs, lean back, and use the momentum to push forward all while we hold on to him. It’s effective and forces us to move with him so he doesn’t fall. Very creative.

What’s Next

H is doing better than ever before. He is still struggling to swallow without choking and gain weight. He still struggles with reflux, even with solids while on medication. He still has a lot of catching up to do with his motor skills and he will likely be in a helmet all Summer. But, he is breathing so well. He has finally grown height wise and is actually on the chart!

We will follow up again with otolaryngology at the end of next month to check how he has healed after his surgery to see what next steps are for his laryngomalacia. We follow up with his GI doctor on Monday to discuss next steps for his reflux and switching his medication again (insurance won’t cover the one medication that actually worked). He follows up with his nutritionist and feeding therapist the following week to see how he is doing with taking a bottle and eating solids and check his weight gain again.

The Kindness of Others

When you’re going through hard times, it is tough to live far away from family and friends. We were lucky to have my mom come and stay with us to help! It was so much fun for L to be with her Grandma! It was wonderful to see my mom after 1.5 years.

We were also so blessed by friends dropping off food, spending time with L at the park, giving us toys and books and stuffies to keep L busy while we help H and go to appointments. Friends to listened to me vent over coffee. Friends who brought groceries.

Thank you all!