Month by Month

It’s been a long time since I’ve written, but like I said in one of my first posts it is therapeutic for me. Under our new circumstances it’s definitely hard, but I love being able to remember some of the happiest moments and it helps me continue to process the hardest.

 

After my last post, the next month Charlie made a lot of progress. There was a lot of up and down with sedative medications, but eventually he was able to come off of Versed! Withdrawal was hard. Charlie would have tremors, vomit, and be very irritable. He would also wake up and be scared. It was so hard to see him go through this, especially being scared. But long term we knew that coming off was the absolute best thing for him. Getting off of Versed and his other sedation/pain medication meant adding alternatives that were taken orally. Charlie was started on gabapentin, Ativan, and methadone throughout all the weaning. Taking these medications meant he needed adequate nutrition through his gut, so his feeds were also increased slowly until he was on full feeds. The hard part was he had vomiting with withdrawal, so it was a careful balance of everything.

Charlie also had a lot of changes with his ventilator. After moving to the red team, it was decided to start Charlie on chronic lung settings, or BPD. This meant higher PEEP, lower rates, and longer inspiratory time (just generalizing). His gases started to look better, but he was still having episodes of low oxygen when he would get mad or poop. This was the first time we heard about tracheomalacia. The team was pretty certain that was causing his episodes, but decided a bronch would be the best way to diagnose and plan for treatment. So Charlie had a bronch and they also exchanged his breathing tube for a bigger one since he had grown. As they expected, the scope showed significant tracheomalacia. When Charlie would get upset, his airway would collapse making it hard if not sometimes impossible for him to breathe. It was decided that his PEEP would need to be increased again for his baseline, but also during the episodes they would increase it. The thought was that the increased pressure would help keep his airway open. After starting that, it did seem to help. His oxygen would still drop, but not nearly as bad and he would recover much quicker. The team told us that usually kids would grow out of it. We would keep Charlie on these settings for a few weeks and then re-evaluate where we were in treatment.  

Some other treatment based progress Charlie made was getting off of Remodulin and milrinone. These were primarily for his pulmonary hypertension. After he was off they repeat an ECHO and it was better. We were so happy because pulmonary hypertension could be a severe problem that babies with CDH can have. He also had an MRI of his brain. This was routine for every baby that had been on ECMO because of the risk of bleeding. There was a small amount of fluid in front of his frontal lobe, but since developmentally he was appropriate neurology had no concern. They said it would likely resolve on its own.  He also was able to get one of central lines removed! This made it so much easier to put him in clothes and was also one less thing that was at risk of infection.

This month was a hard one for me. There was one day I woke up with a fever and felt horrible. I knew I couldn’t go to the hospital because if I were to give him any illness I would feel HORRIBLE. So I stayed home for one day. It was one of the hardest days being away from him. I slept all day and when I woke up I would cry. Zach facetimed me that night when he got off work which helped, but I just wanted to be with him. The next day I was fever free and feeling better so I went but wore a mask and didn’t touch him still. This was the longest I went without holding him since we started holding him. The day I got to hold him again was such a relief. It felt like I was missing apart of me being distanced from him. Then some time later, I got in a car wreck on my way to the hospital. Someone rear ended me and completely bent one of my rear tires. I didn't want to waste time so I still drove to the hospital and had my car towed from there. Unfortunately, I also didn't call the police and the driver was uninsured, so it really sucked for me. Luckily, I was fine and everything worked out. A couple weeks later, I had to go back to work. The days leading up to my return I cried A LOT. Every time I thought of being away from Charlie for the whole day I would cry. The anticipation was so much worse than actually being at work. I love the people I work with. I definitely cried when I first got to work, but my team made the days so easy. I was happy to be socializing with people and getting some more of my purpose back. It was hard, but it was so good for me.

The month was also full of so many happy things. Charlie seemed to be happier than ever. He was more awake now that he was getting off sedation and he loved to play. He was starting to put his fingers in his mouth, even with his breathing tube. This was such a good thing developmentally. A lot babies with breathing tubes develop oral aversions, so this was promising he may be able to take a bottle or maybe even breastfeed in the future. He was also obsessed with his high contrast mobile. It was a small paper one from the hospital, but my dad insisted he get him a bigger better one. And Charlies was even more obsessed. He started trying to grab the mobile. He would look back and forth from us to the mobile because he didn’t want to look away from either. Charlie started moving more including with physical therapy. This was the first time Charlie sat up on his butt! Obviously he needed a lot of help because he had zero head control, but I can imagine it felt so good to not be laying down like always. We tried to start sitting him up daily to strengthen his muscles and help with his development. We also got to do Charlie’s bath for the first time! Charlie typically loved bath time, mostly because he like to have his head and hair rubbed and cleaned. Bath time became part of our nightly ritual for bedtime. There used to be nights where I was exhausted after work and didn’t want to stay too late to do bath, but I am so glad that I made that a priority because it was something so special the three of us did as a family every night. During pregnancy Zach always talked about how excited he was for “boy time”. And finally, he got that. We put Charlie in a hockey swaddle, put him in Zach’s arms, and they watched their first Blues games together (Charlie may have watched with his eyes closed). Seeing them together melted my heart.

We also got our first few holidays. Easter was especially fun. We did a “photoshoot” where we put Charlie in a Peep swaddle and put eggs around him. He slept right through it, but they are some of the cutest pictures. I also got to celebrate my first Mother’s Day with a baby on Earth. Zach secretly made crafts with his nurses and Child Life team to surprise me. I got to spend my Mother’s Day with Charlie and a long day of holding him. I know a lot of people like to have a day to pamper themselves, which I’m sure one day I will to, but I would not change my first Mother’s Day for anything. Being with Charlie was truly the only thing I wanted. And our big boy turned 3 months! During pregnancy we were told typical hospitalizations for CDH similar to Charlie would be 6-12 weeks. We were expecting to be home by the time he turned 3 months, but as always Charlie was keeping us on his toes. I like to think he felt at home with his Children’s Mercy nurses, he wouldn’t have known what to do without constant attention from people he loved. During this time, he got another primary nurse who joined our family. Charlie was so lucky to be so loved by people we wouldn’t have gotten to meet without the NICU.