Just in case you haven't read my previous blog post I'll give you the nitty gritty: my son Jay was born with a congenital heart defect that was undiagnosed prior to birth. Shortly after being born he was life flighted to our local children's hospital for an Atrial Septostomy procedure until he could have open heart surgery.
His procedure was late on a Wednesday night. All day Thursday he remained in the NICU intubated, unable to be held. He stayed on antibiotics and a medication called Prostaglandin. The Prostaglandin helped the hole in his heart stay open and allow oxygenated blood to mix better to be delivered to the rest of his body. Unfortunately this medication can make you feel pretty crappy. He was still under some sedatives Thursday so it was a fairly restful day for him. Friday was a completely different story. Friday his team worked on decreasing his ventilator needs to extubate him. He was extubated early in the afternoon and that was the first time we were able to hold him since he was taken from us Wednesday.
Unfortunately he was still on the prostaglandins which can cause apnea (periods without breathing) even after he was extubated. He would stop breathing and a couple of times he had to have help getting his oxygen saturation back up to a normal level with nurses or respiratory therapist putting a mask and bag over his mouth to breathe for him. Luckily I'm a nurse and this didn't freak me out like it did my poor husband. When I started noticing him not breathing when I was holding him I would rub his sternum or tap his feet. He had lines everywhere so he had to remain undressed and just in a diaper which made it easy for us to remove his blankets to make him uncomfortable and mad to cry in order to get a good breath in. It all sounds extremely mean but it's what we had to do at the time to help him through.
Friday night was a particularly hard night. He kept having the frequent apnea issues and his blood pressure wasn't doing particularly well. He was very uncomfortable and cried a lot. We tried extremely hard not to re-intubate him but his oxygen saturation kept dropping. They tried oxygen and eventually had to put him on a CPAP (Continuous Positive Airway Pressure) machine. I kept holding his hand and trying to leave my hand on him for comfort but it was a lot physically on me to stand that long next to his isolette. I, of course, had to keep leaving to pump and was getting no sleep between pumping, his monitors going off, and him crying. His nurse had another baby with the same congenital heart defect that was doing worse than Jay was. He was hooked up to so much that I had to have her help to hold him. I finally got to hold him around 3 a.m. and he fell asleep, but that also meant he got super comfortable with me and he stopped breathing because of the medication, and we had to put him back in his isolette.
On Saturday, Jay had to have an ultrasound of his belly and brain to check for any other abnormalities or concerns prior to a long open heart surgery. His belly checked out clear, yay! On his brain ultrasound they noted a Grade I hemorrhage. This means he had blood on his brain in a small amount. Our doctors told us if you looked at the brains of even healthy newborns, most of them would have some blood on the brain as a result of birth trauma. His birth was unassisted, meaning I did all the work with pushing, no use of forceps or a vacuum were needed. However, use of those tools could have caused the bleed to be worse. Because he had the bleed, they decided to do an MRI just to have a better look. We had a few bright spots on Saturday: he got taken off the prostaglandins, he got his MRI checked off his to-do list, and we got to move from the Neonatal Intensive Care Unit to the Pediatric Intensive Care Unit. Babies move from NICU to PICU at least a day before open heart surgery so the intensivist and cardiology team there can get to know the patient prior to surgery. Being in the PICU meant we had a private room with a "bed" so we could get more sleep, and I didn't have to leave his bedside to pump anymore.
The result of his MRI was a congenital brain defect- but they were unsure of which one. He was swaddled but not sedated so he moved a little bit causing the pictures to get blurred. They weren't able to definitively tell the brain abnormality but they told us it was either Dandy Walker Variant or Mega Cisterna Magna. They explained the details of this to me on Sunday afternoon when his surgery was Monday morning. It all went in one ear and right out the other. The neurology team essentially told me we would need to watch him closely to make sure he was meeting his milestones. That was the only portion of what they told me that I retained; likely because cardiology already told us this info.
Over the weekend, since he wasn't eating, his bilirubin was high and he had to be under the bili light, still naked except his diaper and protective eye coverings. He absolutely hated that thing. He wouldn't sleep unless he was being held. We did our best to hold him for a minute or two at a time to settle him hovering over his isolette but it wasn't enough. His day shift nurse Sunday let me hold him and she didn't make me put him back at the end of the 30 minute time limit like she was supposed to. Talk about a saint! His bilirubin, at that point in the day, was trending down enough that he was very close not not even needing the bili light anymore. He finally got some sleep in my lap and it was so nice to be able to hold him without a million wires. He was still hooked up to monitors and arterial lines but it was more manageable for me than previously.
High bilirubin can cause brain damage so it was absolutely necessary he stay under the light no matter how much he hated it. He was getting labs every 6-8 hours to make sure all his levels were safe. He was able to come off the bili light that evening which was nice because we got to hold him a lot more before surgery this way. He wouldn't have had to be under the bili light after surgery because he received a blood transfusion which would have resolved the high bilirubin levels anyway. Looking back, the light was very insignificant, the next 6 days lasted an eternity even though he got to get rid of it.
