So, I have an ex-preemie. My little Peanut. Ethan is now 8 and a half and thriving. We are dealing with some fine and gross motor issues and anxiety, but other than that, he is healthy. He has had 10 surgeries since he was born (all day surgeries, and most involving hernias) and 2 hospital stays due to getting pneumonia when everyone else had the flu. He is definitely smaller than most 8 year olds, but he has had to play catch up. He has been diagnosed with Developmental Coordination Disorder (DCD) and Oppositional Defiant Disorder (ODD). It’s funny those abbreviations. He was always called weird in the hospital! He loves reading, Star Wars, Mario Bros, video games and pizza. He HATES math and can’t decide between being a scientist or a video game tester when he is older.
Ethan came 3 months early in June of 2008 due to HELLP Syndrome. He was 13 weeks early and therefore only weighed 1lb, 1oz and was 29.5cm long. So basically, a block of butter and a yellow ruler long. By the end of July 2008 he weighed 2lbs, 10oz and was about 35cm long. He was finally starting to grow and the doctors were happy with his progress.
Ethan stayed on a SiPAP, (which is a form of respirator) basically it keeps his lungs inflated when he gets tired and gives him extra breaths per minute until he was almost 3 months old. After that, he was on forced air until 2 weeks before he went home.
He loved lying on his tummy and hated being handled by the nurses. I was able to hold him for the first time on Father’s day, which was when he was 2 weeks old. And maybe I should have shared that experience with Sean, as it was Father’s Day, but I couldn’t. I was selfish as it was the first time I actually was able to hold Ethan. Unfortunately after that day, we were unable to hold him for another 2 weeks.
The NICU is definitely a place that I never thought I would see myself having to go through. But those 19 weeks were not been nearly as bad as I would have thought. I made some wonderful friends in there, and if it wasn’t for them and the nurses, I am sure I would have killed off Sean and my family. We still keep in touch with a few of the other families we met. Every day was a new day and we weren’t sure which way it was going to go. I am grateful for Sean and the rest of our family and friends who helped us through this adventure. Even though I am sure I was crazy half of the time.
Ethan had his fair share of ups and downs in the first 8 weeks. He had heart surgery in the first week of his life to close a valve that didn’t close; this is called a PDA ligation. He had jaundice and therefore needed light therapy (which we called tanning) to cure it. He was thought to have many different infections and was put on and off of antibiotics throughout the first couple weeks. He went from being intubated (basically putting a tube down his throat and the machine breathed for him), to bubble C-PAP (he breathed on his own, but the machine kept his lungs inflated in case he got too tired to breathe), to being on SiPAP at the end of July. Right before my birthday (July 16th), he was diagnosed with E-Coli in the urine, so basically a urinary tract infection. He was put on more antibiotics and was sent for a spinal tap. A week later, the doctors noticed that there were blasts (abnormal clusters of white blood cells) and sent Ethan for a bone marrow biopsy. Those tests, again, came back normal.
August and September were basically the same. Every day, I would get up by 6am, shower and get ready and head to the hospital. I was there by 7am every morning so that I could listen to rounds. I wanted to know every detail of my little boy’s life.He loved tummy time, baths and cuddles, but hated loud noises, rough handling and dirty diapers. Pretty typical for a newborn. By mid-August, he was 3lbs, 5oz. Which was triple his birth weight. It seemed incredible that in 2 1/2 months he could triple his size! He was just so tiny! The doctors started weaning him off of the SiPAP at the end of August.We didn’t get to give him his first real bath until August 29th, if I remember correctly. Before then, his skin was too fragile and he was wiped down or cleaned up very carefully.
His actual due date was August 30th. The doctors said most families go home around their due date. However, we still had to wait another month. Ethan finally came home on October 7th, 2008. 4 months, 5 days after he was born. That is 127 days in the hospital!
I have forgotten a lot over the years, but I remember every bradycardia or apnea that he went through and the beeps the machines would make. I don’t remember all of the little details, but I remember the nurses and doctors. They were amazing! Every day was a new day and every day I was surprised by how Ethan survived. I was amazed by all the little things he went through, such as the weekly blood tests, and he just kept on trekking!
Ethan is now 8 1/2. It has been almost 9 years since our little Peanut’s arrival. He still doesn’t fit into any box; he has been tested for ADHD, Autism and is still followed by the Neonatal Clinic. Every test has come back negative. He is his own person, and I am grateful for that every day. I still take him back once a year to the hospital. We go and see if any of the nurses are working (who all still remember him!) and we go and visit his plaque. We donated money to BC Children’s Hospital because without it, we wouldn’t have Ethan! He is our little miracle boy!