It was April Fool’s Day 2008. I decided to play a practical joke on two of my best friends and told them I was pregnant. Little did I know not even a week later I would find out I was actually pregnant. I remember crying because it was unplanned and I was scared, but we were so excited as well. It was an amazing moment for Don and I… we were going to become parents! I remember calling my mom and telling her. She asked “What does this mean?” I told her it meant she is going to be a Grandmother : )
Looking back, the signs were there. I had my Nuchal Translucency Ultrasound and was informed it was abnormal. The doctor said our baby had a 20 to 50% chance of Down’s Syndrome. Needless to say, I was horrified. My worries subsided when I spoke with my Ob/gyn and he said not to worry as my risk was a little higher than women my age, but nothing significant. After the NT testing, my ultrasounds were normal and I was measuring appropriately.
Until my 24 week ultrasound… I was informed that I was measuring 4 weeks ahead. The doctor feared that I had gestational diabetes, so I had testing. Normal.
28 weeks hit and I remember laying in our apartment hurting like no other. I pulled Don out of bed and we went to the ER for what I thought was preterm contractions. I was observed for about six hours and I was given medicine and a dose of steroids and sent on my way. I had another dose of steroids two days later. I am eternally grateful for this as honestly this may have helped Chase live.
Three days after I was initially in the hospital I thought I had preterm contractions again. This time the doctors did an ultrasound and we were told our little one had Hydrops. Our doctor confirmed it when I had an amniocentesis. We had no idea what Hydrops was or what caused it. And then we were told the severity of the condition. Don and I decided early in the pregnancy that we wanted the sex of the baby to be a surprise. But once we knew that our little one may not survive, we decided to find out… We were having a little boy. Within hours, I had developed Mirror Syndrome and my body swelled to about three times my size. Right before my C Section we were told Chase had at best a 20% chance of survival (an approximation that was high) At one point, the doctor’s couldn’t find my cervix, so they made the call to do an emergency C Section at 28 weeks.
I remember being told I may not remember this as the doctor’s injected me with morphine.
I remember so much from that day, but it is all still a blur. Our little guy was born on September 23, 2008 at 4:59 p.m. weighing 5 pounds, 3 ounces. Chase should have weighed about half of that. He was whisked away within a matter of minutes and I didn’t see him until the next day. Our entire family was in the waiting room waiting to hear what happened with the C Section. After Chase was born, Don went out and told them we had a boy, but this was only the beginning of a long, long road.
Chase was immediately intubated and hooked up to so many machines, I couldn’t keep track. Chase was doing well at first. The doctors at our local hospital had never seen Hydrops and they were trying to keep him stable while they determined what to do. During the first three days, Chase had kidney failure. He got through it. Then his second came a few days after that and he made it through, but we were told he may not. It was horrifying coming to the realization your child may not make it. I prayed and prayed every day. After 8 days our local hospital had done all they could and they transferred him to Children’s Hospital of Philadelphia.
For the next four and a half months, Chase fought so hard to beat Hydrops. There were so many downs before there were ups. We were told a few times we may lose Chase, and we prepared ourselves for the worst. But our little guy kept fighting and fighting and he NEVER gave up. His kidneys were a big issue as they were in our local hospital. He required Lasix and he was on a medication called Diuril. Chase required multiple blood transfusions for the first six weeks as well.
Chase spent six weeks on a ventilator, two of which were on a horrible machine called an oscillator. Due to the amount of fluid Chase had, he required chest tubes for 8 weeks. The amount of fluid he had was insane. He would have close to 1000cc a day come out of his tubes.
Another catch to this is during the time Chase was in the hospital, I was on leave from work. After 8 weeks I decided to go back to work until we knew Chase was coming home. So from November 2008 through February 2009 I worked full time while Chase was still in the NICU. Every day after work we would have our routine. Go to the hospital after we were done work and stay there until 10 p.m. or so. On the weekends, we were there from morning until night. It was hard, but I wouldn’t have had it any other way.
During Chase’s extensive hospital stay, the doctor’s decided to do genetic testing. All of Chase’s chromosomes came back normal, but there were certain features Chase had that made them think he had something called Noonan’s Syndrome. So Chase was tested for that and all testing came back normal with the exception of one small fragment. Even with that, they felt Chase did not have Noonan’s. Don and I felt personally the features were there because of the swelling. Now Chase looks like a healthy mix of myself and Don.
At about the two month mark, things started to turn around. The doctors tried a treatment on Chase because he had Chylothorax. The drug called Octreotide helped Chase’s drainage from his chest tubes stop. The doctors felt this wasn’t the only factor in his fluid ending, but we felt as it helped. Around the same time, Chase was given a heavy dose of steroids to help wean him off the ventilator. They attempted a few times before being successful. Chase stepped down from the ventilator to the CPAP, where he spent a few weeks on. After that, he went to a high flow nasal cannula for about a week and a regular nasal cannula for a few weeks after that.
Slowly but surely all of the wires and machines came off of Chase. The next hurdle we had to get over was feeding. Because Chase was so sick in the beginning, they never tried to feed him. When he was about three months old, the nurses started to feed him. It was VERY unsuccessful. Eventually Chase required a feeding tube in his stomach and still has it to this day.
Chase was discharged with the feeding tube and was fed formula through a gravity bag (just like an IV bag). For the first year it seemed as though every time Chase had a feeding, he would vomit most of it up. I am amazed that he gained any weight since he had such horrible reflux. He still is fed through the gravity bag for some of his nutrition, but now most of his nutrition is being given to him through mashed and pureed foods that we make for him.
Chase was discharged from the hospital on February 10, 2009, close to 5 months after being born. He came home on no supplemental oxygen. Chase had severe reflux in the beginning and was followed by Gastroenterology for a year and a half afterwards. He required Prilosec to help with his reflux. Thankfully he was weaned off Prilosec a year ago. He had extensive follow up in the beginning (Preemie Follow Up, ENT, Gastroenterology, Feeding Clinic, Eye Doctor). Initially doctors were concerned about hearing loss, but after tubes were placed in his ears in December 2009, he has passed hearing tests with flying colors.
To this day, Chase has developmental delay and gross motor delay. He crawled when he was 15 months, walked when he was 21 months. He still has feeding difficulties but thanks to an amazing feeding clinic at Children’s Hospital of Philadelphia, he is well on his way to eating normally. Chase has some speech delay, but talks up a storm. This September will be Chase’s third birthday. I cannot believe how far he has come and the obstacles he has beaten. He truly is my hero.