Leading up to his delivery, we both had some issues. I got sick in December, which knocked my asthma out of control. Being allergic to all of the oral steroids they typically treat asthma flare ups like this with, I figured I’d continue to use my regular inhaled steroid. I thought it would eventually get better but it didn’t. Come 33 weeks, I came home from work and after sitting in a chair helping Carly with homework, I realized I was out of breath. I checked my fitbit and saw my sitting/resting heart rate was 128 and I had been sitting for at least 10 minutes. There was no reason for it to be that high. I ended up in the hospital and after sitting on monitors in L&D, the doctor didn’t feel it was an OB issue so they sent me to the ER to have embolisms and clots ruled out. I kept asking for a fetal ultrasound just to make sure everything was ok. L&D didn’t feel it was necessary even though I asked 2-3 times, however my doctor in the ER was willing to do that. While nothing major was found, the US indicated Declan was measuring 4 weeks past where I was in gestational age. I was 33 weeks, he was measuring 38 weeks. This caused me to follow up with my OB and have another US performed the day before my regular scheduled OB visit the following week. At my US appointment, they found that he, indeed, was measuring 3 weeks ahead and I had a lot of extra fluid around him. They ruled out gestational diabetes and decided to perform a TORCH panel, which tests for various antibodies for Toxoplasmosis, Rubella, Cytomegalovirus, and Herpes simplex virus as well as an additional test looking to make sure I didn’t have antibodies for parvo. All came back negative and normal.
The next day was my 34 week routine OB visit. At every visit, they use a doppler to listen to the fetal heartbeat to make sure the heart rate is where it should be. He was tachycardic at 185. I was also tachycardic, so they wheeled me over to L&D and hooked me up to the monitors. Eventually his heart rate came back down and I was sent home.
Everything randomly resolved but they decided to do weekly ultrasounds leading up to his birth just to measure his growth and fluid around him. As far as Colby and I know, there was nothing in these ultrasounds that indicated a congenital heart defect.
Going back to when I was sick in December, I followed up with a pulmonologist a couple of weeks before he was born and got on some asthma meds that finally kicked the last of the inflammation and we’d been fine since then. They say there isn’t anything I could have done to prevent it, however some articles say that my exposure to a virus or bacteria around the midpoint of my pregnancy could have caused it, which would have been around the end of December, when I got sick, so maybe there’s something to that.
Moving forward, here is an update I sent to everyone on June 3rd; 5 days before what eneded up being his surgery.
The long and short leading up to yesterday is that the doctor’s have kept him on a drug called Prostin to keep his PDA open. The PDA (patent ductus arteriosus) is what the body uses in fetal development as part of fetal circulation. The blood bypasses the lungs for oxygenation in fetal circulation because the baby is not using the lungs. When a baby is born, typically this hole closes and the blood begins to oxygenate via the lungs. This did not happen for Declan due to his pulmonary valve being malformed (hence why he had the cardiac cath procedure to pop the valve open) so his body is only getting properly oxygenated blood because this fetal circulation hole (the PDA) is being kept open by Prostin.
In utero, when the malformation of the pulmonary valve (which leads to the PDA) was present, this caused his heart to have to work harder to pump the blood around his developing body, leading to a thickened right ventricle (the lower right chamber of the heart). Because the heart is a muscle that pumps from around 8 weeks gestation, it has 9 months of pumping and developing that muscle. When the heart worked harder for Declan, the right ventricle’s outer wall became too thick due to meeting resistance from the pulmonary artery, causing the heart to not beat properly once he was born.
Leaving him on Prostin allows the PDA to stay open to get oxygenated blood to his body while giving the right ventricle’s outer wall time to thin out. There’s been a chance of him having to go for open chest (not open heart) surgery to place a shunt in the PDA to keep it open as a temporary solution until he’s older, where he’ll have another surgery to have a conduit put in as a permanent solution to his heart problems.
The hope is that the right ventricle wall will thin out enough to pump the blood properly in order to allow that PDA to close. When it does close, the blood will then enter the pulmonary valve and instead of going through the PDA, it will go through the pulmonary artery, skipping the PDA because in theory, it won’t exist, and go to the lungs to oxygenate.
While the right ventricle wall has thinned out since his birth, it’s still not enough to support him, which is why yesterday was so difficult. Yesterday, they turned off the Prostin to see how he would do. Over the course of the day, we watched his sats (pulse ox, heart rate, respiratory rate, etc) plummet. At one point, they decided to give him a blood transfusion. After they hooked up the blood and started transfusing, his sats sky rocketed. We became hopeful that this blood transfusion was working to help him, however, we later learned that the line they hooked the blood up to was the same line they had used with the Prostin and while they had flushed the line earlier in the day, they’re assuming that there was still a bolus of Prostin in the line, giving him a small dose of Prostin, which caused him to do really well, but, as expected, his sats went back down, but not quite as low as they had earlier in the day, so maybe the blood was helping at some point.
They put him back on Prostin after the blood transfusion. His sats came back up and stayed up throughout the night last night. They also reduced his oxygen back to room oxygen, which is 21%.
As with many hospital stays… once you diagnose a problem and start trying to fix it, one fix leads to another problem.
After removing his UAC and UVC lines (catheters in his umbilical vessel and artery) he developed a clot, which is very small (thankfully) so they put him on Heparin, which is a blood thinner. The blood thinner has caused lots of bruising around his little body, especially where the cardiac cath procedure took place.
The Heparin also caused him to swell terribly. They put him on lasix which is a diuretic to get him to pee off the water retention, which helped tremendously.
He has also been NPO (nothing by mouth) so his jaundice has gotten a little worse and an x-ray this morning revealed he is stopped up, so they’re giving him a suppository this morning. I believe they will be starting him back on breastmilk today to prevent gut atrophy. They’ve had him on TPN (Total Parenteral Nutrition) to keep him “fed” via IV. They also had to put him on potassium due to the diuretic.
That’s the update for now. We’re not sure where the doctors will decide to go with his treatment. Last night seemed like surgery was inevitable, but the doctors have conference Tuesday morning, where 30+ medical staff (MD’s, PA’s, and NP’s) discuss their cases. There isn’t one doctor that makes the decision on Declan. They decide as a group.
He has his surgery tentatively scheduled for Friday (though we heard Thursday yesterday) but it sounds like they may try to give him more time before they take him to surgery, so we will know more on Tuesday.