Our induction into parenthood has been…interesting. Perhaps there's no real way to ease into it but I feel like we've been drinking from a fire hose for the past nine weeks.One week after Max was born, the Health Department called and told us that Max's newborn screening had come back positive for cystic fibrosis and a metabolic disorder. After two more rounds of tests, they finally determined that the tests were showing a false positive reading and that Max is fine. We breathed a sigh of relief when we found out the news on a Thursday afternoon. We had one weekend to relax and then our world was turned upside down again the following Tuesday.
Max was super fussy and would not eat. He pushed away from me like it hurt him to eat so I thought he just had a lot of gas or perhaps acid reflux. We cajoled him throughout the night and then took him to the pediatrician's office on Tuesday morning. Our regular doctor wasn't in but the doctor that we did see listened to Max's heart (among the other vitals she checked) and suggested that we go to Primary Children's Hospital. Max's heart rate was fast. The doctor suggested that it might be a build-up of gas in his tummy or maybe a mild infection that his body was trying to fight. So we got back in the car and headed to the emergency room. I wasn't particularly panicked - I figured we would be heading home in a few hours with some antibiotics or maybe some acid reflux medicine. Boy was I wrong.
We started out with one nurse and one doctor in the emergency room. Within a matter of 10 minutes, we had a team of 15 people working on Max. His heart should be at ~140 beats / minute - his was 277 beats per minute. And because it was beating so fast, it couldn't push blood effectively to the rest of his body so his major organs were shutting down. The IV team tried to get a line in his body for about 45 minutes before they succeeded. His veins were mostly collapsed because his little body was so dehydrated. The doctors tried to push two doses of a medicine that is supposed to shock his heart back into a normal rhythm but it didn't work because he was so sick. Cory and I had to sit back and watch while they hooked Max up to the defibrillator to shock his heart. They had to do it twice before he finally converted. It was horrible to watch Max's little body jump off that table when they shocked him.
It turns out that Max has something called Superventricular Tachycardia i.e. irregular heart rhythm. A heart has four chambers and each chamber has insulation between them so that the electric current from one chamber can't skip to the next one. In Max's case, the insulation didn't grow properly, which means that every once in a while, he has an extra heartbeat that jumps from one chamber to the other and causes his whole heart to go out of rhythm. The good news is that most kids grow out of it by the time they are one year old. In the meantime, Max has to take three doses of a medication daily that keeps his heart in rhythm.
We stayed in the PICU for a few days and then they transferred us to a regular room. We were released on Saturday and spent a few days at home before Max went back into SVT again on Tuesday. We have to check his heart rate a few times / day with a stethoscope and I noticed that his heart was crazy fast after he ate that afternoon. So back to Primary Children's we went. Thankfully Max responded to the medication they pushed into his system so he didn't have to be shocked again. We stayed in the hospital until Friday. They sent us home with a higher dose of medication and so far Max has been doing great. How fortunate we are to have a world class children's hospital in our backyard. The staff at Primary Children's is amazing.
I've decided that I should get the mother of the year award. I was tired and frustrated with a fussy baby. Turns out he was actually going into cardiac arrest. That's fantastic. We are so lucky that we didn't lose our little Max.
So many wires attached to his little body!
All snuggly in the hospital bed. It was tough to get him out to feed him and love on him. Inevitably I would pull a wire off and set off an alarm at the nurses station.
One month old.
All dressed up in our camo gear. Daddy is gone hunting this weekend. He really wanted to take Max with him...
Liking bath time now.
Our first time going to church (and we only made it to Sacrament meeting due to Max's feeding and medicine schedule). Max is 8 weeks old here.
After a hard day's work.
One of my friends gave Max these darling pumpkin p.j.s'. Here's Mr. Pumpkin Bum!
Two months old.I'm still not sure what I think about motherhood. I'm still waiting to say it's the best thing I've ever done and that it's totally worth it. I thought I was prepared for how tough the newborn stage was going to be. Everyone told me how tough it was but no one told me that it is absolutely brutal. Of course, perhaps I'll have a different outlook on things now that we've finished three weeks of sleep training. Once Max got out of the hospital, he wouldn't sleep unless he was in my arms sitting upright. I lasted for four days doing that and finally had enough. So the first week was spent getting him to fall asleep in his crib on his own. The second week was spent getting him down to one feeding per night and the last week was spent getting rid of that last nightly feeding. Max still wakes up around 3:30 but he'll go back to sleep once I put a pacifier in his mouth. The world is starting to look a little better now that I can see it again.
Max went in for his two month check-up yesterday. He weighs 9 lbs 9 oz and is 21 inches long. He's in the 6th percentile for his age but considering where he started and what he's been through, his doctor was pretty impressed. We sure love him and pray that he continues to be healthy and strong. What a tough kid!
