My son’s name is Colt. He was born in 2018, 5 weeks and 2 days premature. This along with the care, lack of communication and lack of compassion resulted in some serious trauma from the experience.
I wasn’t prepared for a premature baby. I wasn’t given the information I needed to be successful. I was trying as hard as I could to breastfeed with him, and couldn’t make it work. To top that off, being premature he burned more calories than he was taking in by trying to get him to eat longer. Instead of trying to feed for 20 minutes I was limited to 10 so he didn’t burn everything he was taking in. At his two week appointment he had only gained one ounce from when he went home from the hospital.
Colt’s growth was a battle for the first couple of years. He hit milestones, but barely. Things that would be achieved during three to six months he would achieve at six months. He made up for the teeny tiny premature baby by being on formula and becoming a giant chunk of a baby. If he had needed it he would have had an adjusted age to account for being premature. When those five weeks are subtracted he was actually right where he should have been for his milestones.
Based on my cardiac history he was monitored from birth by a cardiologist. We were lucky that my cardiologist would see him as well. At seven months he and I were diagnosed with Alagille Syndrome. Alagille affects the production of elastin in the body, making arteries narrow. It can also affect a number of other systems in the body. Colt had significant pulmonary artery stenosis (narrowing of the arteries that carry blood to the lungs). He is also monitored for any liver implications with yearly GI appointments.
In 2020, right as COVID was shutting down the country, it was decided that we couldn’t wait any longer to intervene with his pulmonary stenosis. We had been waiting for the right time when we knew he really wouldn’t be able to catch up and when he wouldn’t remember anything. That was a big thing for me, I didn’t want him to remember anything from his surgery if we had to go that direction. We first attempted balloon dilation of his arteries, but they found that the arteries were a lot more narrow than the imaging suggested. There was no way to fix them this way. His cardiologist happened to be at the children's hospital that day and came to see me to tell me how things went and what that meant as far as moving forward.
In June 2020 my two year old son had open heart surgery. The surgeon placed grafts on both pulmonary arteries to get them a little wider to then allow us to proceed further at a later time. The pulmonary artery grafts were provided by organ donation and is an unbelievably humbling and amazing gift to receive. I will forever be grateful that someone made the choice to donate their loved ones organs to help my son. Nothing can prepare you for the sight of your kid after they have major surgery. Sedated, wires, tubes, it's terrifying and heart breaking.
About two months later we came back for balloon dilation beyond the repairs they had already done and placed a stent to ensure the arteries would stay open. The difference between before and after surgery is night and day. He is thriving. I can see the physical difference in him. I could see it within a few months. We used to take daily naps, within weeks of his surgery the naps stopped completely. No more snuggling on the couch or in the recliner for nap time. He was no longer exhausted, he now has never ending energy and he is catching up on the growth charts.
We are struggling with some delays in development and I’m not sure if this is all related to the other things he has had going on in his life or because I just don’t have a clue what I am doing. Probably a mixture of both.
He is definitely behind in his verbal skills, has little interest in writing, coloring, or all the other things he would be learning in preschool. We are planning to home school, this will allow me to cater to him to ensure he gets the best possible education considering where he is. However I do plan on having him evaluated for resources because I just feel like there is something there. He struggles with calming down. He gets way too excited and obsessive about things and wants to keep repeating them way beyond when they should stop. Something is there and I’m not positive what.
His social skills are also behind. He doesn’t know what to do with other kids, no matter how much he wants to play with them. He also gets so excited that he is a bit overwhelming to other kids. He screams and runs out of pure joy, but other kids just think hes weird and a little much. I think this is a combo of things, COVID didn’t help and I never really had time to take him places to socialize with kids. I worked full time, then we were locked down for a year. I am the last of my friends to have kids, they are all older than him, plus we live in another state. We don’t really have friends here that have kids for him to play with. He is pretty well socialized with adults because of going to events with me for a few years, but kids he just doesn’t get. He wants to, but he doesn’t know how to play with them.
I think part of his behavior might be boredom. He gets way too excited about a project or something to do, even though he doesn’t actually want to do the project, he wants you to do most of it for him. He doesn’t listen. I know it's partially the age and testing boundaries, plus having a baby sister after being the center of attention for four years, but seriously, he should be able to listen a little better than he does and he should be more responsive when asked to do something..
Even with all the frustration I feel, he is the sweetest kid ever. He gives hugs and blows kisses. He is curious about everything. He wants to help feed the dogs at dinner time. He wants to help do the laundry. He loves story time at bedtime and gets so upset if he doesn’t get those stories. He wants to do crafts and gets mad if you stop him before he is ready. He has discovered how awesome the library is and that we can get all kinds of books there instead of just the ones we have read multiple times at home. He has a good heart, but just struggles to understand why some things aren’t ok or can’t be done. He can’t help himself some days and I get so tired of repeatedly telling him not to do the same thing over and over. But then he loves on his sister and he is just the best thing I have ever seen.