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The beginning of Declan’s journey – The Discovery

The best place to start is to let you in to the very intimate details as I remember them. I wrote this the day after his birth so I could remember as much as possible. It’s funny reading this again today and realizing how much I’d forgotten. Reading it almost brought me to tears again, seeing it from this side of it.

Declan has pulmonary atresia with right ventricular hypertrophy and intact ventricular septum. I’ll get into this more later, but for now, I want you to see what happened in the beginning before we go into more technical details. I’m finding now that I’m further out from it, I’m more emotional about it than I was in the thick of it all. Pictures that weren’t hard to look at before because they were part of our day to day reality are now painful to look back on. So here it is. The beginning of Declan’s journey with a congenital heart defect.

Oh little Declan. How we prayed for you and felt you grow in my belly all of this time. I came in for my c-section yesterday, 5/25/18. Everything seemed off from the get go. Maybe it was a change in some policies or something, but something was off.

Leading up to your delivery, we both had some issues. I got sick in December, which knocked my asthma out of control. I thought it would eventually get better but it didn’t. Come 33 and 34 weeks, we were in the hospital twice. Premature labor was a problem, but together we kicked it, but then we both became tachycardic. Eventually we kicked that too. I got on some asthma meds that finally kicked the last of the inflammation and we’ve been fine since then. I had polyhydramnios, but tested negative for gestational diabetes, TORCH screenings, etc. You measured 3 weeks ahead of your gestation. Clearly, you’d be a big boy.

None of the ultrasounds showed it. 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.

When I first went back to the OR, I was talkative, as usual, but no one else seemed to be. The anesthesiologist put the block in my spine and asked if I was feeling anything yet and I said no, because I wasn’t. He did something else and I barely felt anything at all happening to numb me, but then he laid me back and I could start feeling the numbness and tingling so I knew it would start working. My heart rate kept dropping and my blood pressure kept bottoming out. Dr. New was the lead and Dr. Stoddard was the assist. I felt my right arm going numb, so I knew the block had gone up to far because normally I can still feel my shoulders and chest but I couldn’t this time, plus my arm was numb. Sometime during the procedure, but before Declan was born, I began having a hard time swallowing. I notified them, they did something and it got better. I feared the anesthesia was paralyzing my swallowing mechanism, but they kept it under control. I kept getting nauseous/hungry feeling, which meant my blood pressure was bottoming out, so they kept having to push medicine to get it beating faster again to bring up that pressure. They must have administered 5 or 6 syringes of stuff over the course of the procedure.

I’m guessing it was the anesthesia but I was so sleepy. I just closed my eyes and waited for them to pull you out. Normally I’m excited with anticipation but this time I was just too sleepy, which was weird.

When they pulled you out, you didn’t cry. Colby got to look over the sheet at you but I couldn’t see you. The seconds felt like minutes. I eventually said, “Why isn’t he crying?” They said they were still suctioning out the fluid. Eventually they put you on a swaddle blanket and brought you around the drape so I could see you, but I could tell they were in a hurry. The room remained quiet, but this time I could tell something was wrong. You looked just like Clara when she was a newborn, but your hair was lighter than hers at birth. It was so surprising to see a familiar face and so much hair. It was a sweet surprise.

You still weren’t crying though. They put you under the heating lamp and got your vitals and you weren’t oxygenating correctly, so they put a mask of oxygen on your nose. You let out a few screeches but still weren’t crying. They called Colby over and explained something I couldn’t hear. I was still so sleepy. I asked again why you weren’t crying and the nurse turned around and explained you were having a hard time breathing so they were going to take you to the NICU. They quickly wrapped you in warm blankets, threw on a hat, I got to see you for all of 20 seconds and then you were whisked away to the NICU. They spent another hour working to close me up. I laid there with my eyes closed, somewhat in and out of sleep the whole time. Occasionally, I’d get nauseated and they’d have to push some more drugs to bring up my heart rate.

I worried for you… not in an “Oh my gosh! What’s going on!?” kind of way, but more like an, “Oh my gosh. Is this a big deal or a fluke? Do I need to start freaking out?” After I got done, they wheeled me back to recovery and Alison and Colby were there waiting for me. I didn’t see you in your little plastic bassinet on the rolling wood cart though and my heart sank a little. I asked Colby what was going on and he said they hadn’t been in to update him. By the time I had gotten back to recovery, you were 90 minutes old. Certainly someone had to have some info. It was hours before we knew anything. Eventually we found out you were 9lbs 3oz and 22 inches long, definitely being my biggest baby, yet still, you are so small.

As the night progressed, I was frustrated that I hadn’t been updated. Colby had come to see you in the NICU and took photos. At first you had a CPAP machine, then you had a cannula with oxygen, then they put a tube in your stomach to relieve pressure and turned on a constant flow of oxygen. Colby took your Gama and Papa back to meet you. They were in grandparent heaven, commenting about what a cute baby you are. I felt like I had to fight for it, but eventually, I got them to get me out of bed and wheel me to go see you. I didn’t really even know what your face looked like. It was as if you were still a stranger to me. You were MY baby but I couldn’t imagine your face in my mind. It still feels fuzzy. I asked to hold you and they said I could, but they were still pulling blood for testing.

Basically, the PA said that she believed you had a heart defect. You had a murmur and you wouldn’t keep your oxygen saturation up on your own. What was interesting though was that your Ox Sat was in the low 80’s when you were in the bed, but when I picked you up and held you, it went up into the upper 90’s. Same with when Daddy picked you up. It was as if our skin to skin contact was giving you a boost. Gosh I miss you so much. I just want to hold you and have baby snuggles.

Anyway, after getting the results of your blood gases, they decided to transfer you to Wolfson’s downtown. You needed an echocardiogram to look at your heart, which they can’t do here on the weekends because the machine is kept downtown on the weekends. I felt devastated, like there was something so serious that we could lose you and they couldn’t give me answers because they didn’t even know, and now you’re not just not in my room with me, you’re no longer going to be down the hall from me but across town? I was heartbroken. There was no way to know this is what would happen, but my faith is in God and my heart knew that this was best for you and I want that.

About an hour later, transport came and picked you up and put you on a gurney for babies. It was really sad to see, but again, I knew you were in good hands because you were in God’s hands and He was the one guiding all of this.

After you left, I convinced Colby to stay here and get some sleep. It was around 1 in the morning and we had been up for far too long (20+ hours) and it wasn’t safe for him to drive. They said that he wouldn’t have been able to see you for a few hours anyway, so he slept here until around 6 this morning and went up to Wolfson’s to be with you.

Your sisters were so disappointed that they didn’t get to meet you. Carly was REALLY sad. She just wants to hold you and see your sweet face.

Before long, I got a call from the NICU doc at Wolfson’s. She explained that the echo showed you had a congenital heart defect called right pulmonary atresia.

Pulmonary atresia is a birth defect of the pulmonary valve, which is the valve that controls blood flow from the right ventricle (lower right chamber of the heart) to the main pulmonary artery (the blood vessel that carries blood from the heart to the lungs). Pulmonary atresia is when this valve didn’t form at all, and no blood can go from the right ventricle of the heart out to the lungs. Because a baby with pulmonary atresia may need surgery or other procedures soon after birth, this birth defect is considered a critical congenital heart defect (critical CHD). Congenital means present at birth.

In a baby without a congenital heart defect, the right side of the heart pumps oxygen-poor blood from the heart to the lungs through the pulmonary artery. The blood that comes back from the lungs is oxygen-rich and can then be pumped to the rest of the body. In babies with pulmonary atresia, the pulmonary valve that usually controls the blood flowing through the pulmonary artery is not formed, so blood is unable to get directly from the right ventricle to the lungs.

In pulmonary atresia, since blood cannot directly flow from the right ventricle of the heart out to the pulmonary artery, blood must use other routes to bypass the unformed pulmonary valve. The foramen ovale, a natural opening between the right and left upper chambers of the heart during pregnancy that usually closes after the baby is born, often remains open to allow blood flow to the lungs. Additionally, doctors may give medicine to the baby to keep the baby’s patent ductus arteriosus open after the baby’s birth. The patent ductus arteriosus is the blood vessel that allows blood to move around the baby’s lungs before the baby is born and it also usually closes after birth.

I was happy we had answers instead of yet another medical anomaly in our family. I JUST now got a text from daddy saying you are out of surgery now and doing well. I’m VERY happy to hear that. I hope to know more soon. Anyway, you did require surgery in the cardiac cath lab. They floated a balloon through an artery in your leg up to your heart to try to open the valve and then correct the malformation of the ventricle itself; at least that is my understanding of it.

It’s lonely here without you and Daddy. I’ve been pumping milk for you so as soon as they’ll let you eat, you can have my breastmilk instead of formula. Your Gama and Papa are watching your sisters and plan to come visit me soon so after that, they’ll take the milk from the NICU here up to your NICU downtown.

I suppose that is all for now. I’m going to post some pictures here too and hopefully update this after all is said and done.

I love you so much. It’s amazing how you can love a human being so fast. I can’t wait to hold you in my arms. <3

An update from Colby:

The procedure went well. There were hiccups, but no “complications.” He actually walked me through, essentially, a series of short X-ray or ultrasound videos showing the entire process he went through. How it started off, what he did, the snags he ran into, and then the moment the balloon popped open the valve and the blood flowing freely in and out of the ventricle. It was amazing to watch actually. Anyway, they’re bringing him up shortly to rest. He will need to be watched over the course of several days, but he wants to try stopping the prostin today to see how he does. Dr. English is the on-call doctor and will be around the whole time to help and monitor him.

He did say Declan’s not out of the woods yet, but he is optimistic and we just need to watch what happens with that ventricle to see if the thick wall thins out. He did say Declan will be seeing a heart doctor his whole life, but he is optimistic this issue will not be a hindrance to him in terms of his longevity or future activity or whatever. It’s just something we’ll need to keep an eye on consistently.

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