When you are sent home with a healthy baby, you are told to basically make sure they eat, pee, and poop. Sleep varies, they might get colicky and scream 24/7, they might stain every inch of your carpet and couch in spit up, but as long as they pee and poop, they are pretty much good at life. Even in the most ideal situation when the baby is in the carseat and you are bringing them in the door, you suddenly realize how little and fragile they are.
With a heart baby, if you're lucky like us and get the hope of holding and feeding and taking that baby home, you suddenly realize you where just watching "The Birds" by Hitchcock, and now you're moving up to "Jaws"... This beast actually could kill.
"Here's some equipment, weigh him every day around the same time in a dry diaper. If he gains or looses weight too quickly, call us right away. Here's a pulsox monitor. Take his heart rate and pulse ox levels every day, or if you think anything is wrong keep his pulsox on him for a while and watch his trends. If it changes too much, call us right away. If he starts to look pale, dusky or blue, call us. If he does strange breathing, call us. If he does anything kind of unusual, call us. Here's a binder, keep track of everything and here's a phone number you will need to call twice a week before 10 am Monday and Thursday. Leave a message with all his daily weights, pulses, and pulsox readings. If there is a problem with his numbers, we will call you. Schedule an appointment with his cardiologist in a week from discharge. Anyways, I am so happy you guys get to go home and have some normal baby time! Any questions? " I know, I really am not exaggerating! I actually think I left out some details.
All was going pretty well, he had always had a funny rapid breathing he would do periodically, but it was at a minimum. So he breastfed, and he started having a hard time exclusively breastfeeding, so I would pump some and give a bottle here or there. He would fall asleep, milk would get everywhere and then he would wake up hungry. We had a period where he refused to breastfeed at all, and bottle fed while I called the lactation consultant. We really got into a groove with breastfeeding and then he would seem satisfied.
This was probably just about Friday when that happened. Then Saturday night I started feeling engorged, and he was just not filling his diapers quite as much. That night he went 6 hours without wanting to eat, and then I had to work to get him interested. I had to pump a lot, and decided to give him bottles just to see how much he was getting. I found out he was only drinking a half ounce or 1 ounce every 4-6 hours.
We called our amazing God sent doctor (who had given us his cell phone number! ) and came to our house (I know!) On a Sunday night. By then Jace was also doing much more rapid breathing. He listened to Jace and timed his breathing. After calling the cardiologist, he told us Jace had to go to the hospital that night. We thought maybe they would just give fluids, maybe a medicine could fix it... but in my gut I knew that it could be bad. Our doctor stayed at our house and prayed for us and Jace, and then played with our daughter while we got some things together (did I mention how amazing our doctor is? Like I said, total God-send!)
When we got to the hospital, Jace was already dehydrated a bit, and wouldn't eat at all anymore. They had to try 5 times before getting an IV placed because his tiny veins were too dehydrated. He was miserable. After an X ray and an echo, we were told that his heart was cycling and recycling blood to his lungs. It was causing him to breath so rapidly and could harm his lungs if he they didn't fix it. His heart was enlarged too, because it had to work extra to get the blood to his body because so much was going to the lungs. This was also causing some leaking in his tricuspid valve. He was going to have to have open heart surgery in a few days.
I was crushed, but so greatful to have had him home. We had so many little and big signs that God was watching, loving and caring for us and our son. From our doctor to being assigned to a resident we know, having a friends stop by at very timely moments, having Eliana cared fo and covered for child care... it would be a much, much longer post if I explained all the details.
We prayed and prayed for healing, but we know that if God says no to the hundreds of people praying for healing for Jace, then he is going to use all of this in a way far greater than a miracle of that magnitude would have.
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