We can cross another surgery off of our preemie list!
On Thursday, we finally had Caleb's heart defect corrected. It's been something we knew was coming, and in spite of how "easy" the surgery was for his doctors, this type of thing is never easy for parents. Like many preemies, Caleb was born with a Patent Ductus Arteriosus (PDA), but instead of closing as we hoped it would, it had to be surgically corrected.
A perk of being in a children's hospital? Lots of toys to play with in the surgery waiting room!
What Exactly is a Patent Ductus Arteriosus (PDA)?
A PDA is one of the most common heart defects. All babies have a PDA as they are growing in the womb. It allows blood to flow around the lungs since the lungs aren't being used. For the most part, full-term babies have these close on their own within a couple of days after birth. However, sometimes those PDAs don't close, and they have to be surgically corrected. They are especially common in preemies as those babies haven't fully developed in the womb, and still have a lot of growing to do in their isolettes. The PDA causes the heart to pump poorly-oxygenated blood and have less than optimal blood flow so it can cause issues if left untreated.
What Happens if You Don't Correct a PDA?
Well....nothing at first. Generally speaking, they really don't have a lot of effect on little ones unless they are quite large. The problems come later as they reach their 20's and 30's. An untreated PDA can cause an enlarged heart and heart failure. The hole causes the heart to work extra hard to compensate for the PDA issues and that ends up causing issues later on.
Playing in the surgery waiting room
How Do You Fix a Patent Ductus Arteriosis?
If the PDA is found in a preemie, then doctors often choose to try using medications to close the hole. Our doctors tried Indocin on Caleb and a couple of our other kids. It successfully closed Ellie's PDA (and another kid...I can't remember which one), but Caleb's was ornery and wouldn't budge.
At the time, if the PDA had caused other physical issues, the doctors would have repaired it, but the major problem with that is the size of the child. Preemies have tiny little arteries, so the procedure that they used on Caleb this week would have been impossible. An infant has to have open heart surgery to fix it. No thanks! Whenever possible, doctors push the surgery off until the baby is older.
Thankfully, we were able to hold off on the surgery and wait until now. And with the passing time, Caleb was able to undergo a much less invasive surgery with minimal recovery time.
Mommy and Caleb
Caleb has been followed by a pediatric cardiologist since he left the NICU. It involved yearly echocardiograms and appointments to monitor his heart. When he left the NICU, Caleb actually had TWO heart defects. The PDA, which I explained above, and an ASD. In a nutshell, the Atrial Septal Defect is another hole that is between the top two chambers of the heart that really hampers effective blood flow. At his yearly appointment in December, we found out that his ASD had officially closed and was no longer an issue. Yay!
His PDA, though, was still a problem, and that's why we had surgery last week.
Happily, the procedure is much easier at this age. It involves creating two small punctures in the groin, one in the vein and one in the artery. They use those two holes to insert a camera to take pictures of the heart and a catheter to correct the heart defect. The catheter has a coil on the end of it that is threaded up into the heart and used to block off the hole. In Caleb's case, two coils were used because of the size of the hole. We were told that they used a 3mm and a 5mm coil to plug his 7mm opening. They twisted these together, and they will now be part of his heart structure forever. There is no chance of them coming loose, and eventually the wall of that blood vessel will grow up over them and they will become part of the wall.
Pictures of Caleb's heart that the doctor gave us after surgery (click photo to enlarge)
As a side note, is it incredible or what that they are able to do this???
Waiting to be taken to surgery
So How Did Caleb Do With All of This?
We knew it would be a little rough with the developmental delays and sensory issues that Caleb deals with. Strangers, lights, and noise were the perfect recipe for a very anxious day.
Caleb loved the first part of the day...the part where he got to spend time *just him* with Mommy and Daddy. He was all smiles on the way to the hospital and joyfully played with the toys in the Same Day Surgery Waiting Room. He doesn't give out smiles easily, so I always treasure them.
Then we headed back to an examination room to review his medical records and any changes with the nurse, anesthesiologist, and cardiologist. And that's where his anxiety kicked into gear. He wasn't very happy in the room and kept taking us by the hand to try to drag us to the door (his way of saying, "I'm done! Let's go home!") I think a big part of his frustration (other than the whole lack of communication thing) was that he was hungry and thirsty and couldn't eat anything.
The cardiologist was running a bit late with another procedure, so we were extra happy when the "pink medicine" was brought in. Can I just say, I LOVE that medication! I can't remember what it's called, but it is for patients with anxiety and actually gives them amnesia for a period of time after they take it. Caleb swallowed it about 20 minutes before they took him back, and according to the nurse, he doesn't remember being separated from us. He just remembers being with us...and then being with us. I sure hope that's true! Also, it relaxed him so much that he zonked out for a few minutes, so that was nice!
That pink stuff is AWESOME!!
And then he was put in a wagon and taken back.
We were told that it would take about 2-3 hours for surgery and another 1 hour in the recovery room before we would be able to see him on the observation floor.
But that didn't happen.
Instead, we got regular updates throughout his surgery and were grateful when we finally got the call that he was out of surgery and in recovery. But then 10 minutes later, they called down to us again (the surgery waiting room is a floor below the operating and recovery rooms). "Please send Caleb's mom up." I figured he must have woken up quickly and they were needing a familiar face for him.
Instead, I walked into the recovery room (a big open room) to find a curtain drawn around his bed. A nurse took me inside the curtain where I saw a very combative Caleb, attempting to kick and flail everything off of him at once. Four nurses were trying to calm him down with no luck. One of the nurses turned to me and said, "We need him to hold still. If he doesn't, that clot in the artery in his groin will come loose, and he could bleed out in a matter of minutes."
For a split second, I felt like crying, but quickly realized that wouldn't be the most helpful move for anyone. Unfortunately, I wasn't able to calm him down either. I asked them to lower the bed rail, and even getting into his face so that I was all he could see, wasn't enough. The nurses asked me to sit down in a chair so that I could hold him (as flatly as possible). That didn't work either.
I finally turned to the nurse closest to me and said, "This is going to sound crazy, and you can laugh if you want, but I need you to go back down to the waiting room. Find my husband, and ask him for my oils. When he asks you which ones I want, tell him that I want all of them."
Oh yeah, I totally got strange look (although she did a really good job trying to hide it), but off she went to get what I needed. It was either ask for that or ask them to give him knock out drugs because he was beyond being calmed.
She came back and helped me twist the tops off of three different stress oils so that I could rub them on Caleb...and five minutes later he was calm. I still find myself thinking these won't work, but I'm really glad that I threw them in my bag that morning. I actually brought the stress oils for *me,* but they were handy him too.
It took another 30 minutes or so to get him cleared to go to an observation room, and we finally got to meet back up with Sean.
And then we had to keep him still and mostly flat for the next six hours.
Mommy and Caleb: Finally calm and in the observation room!
Have you ever tried to keep a 3-year-old still for six hours while they are awake?!
Poor kid! He really just wanted to get up and walk around, and wasn't too happy when Sean and I insisted that he stay with us. He was pretty thrilled, through, when the nurses ordered him a big tray of food with all of his favorites on it: chicken nuggets, strawberries, raisins, crackers, juice...and he finished all of that off with a watermelon slushy and the french fries from my lunch. He was so pampered by the time we left that floor. His nurses were beyond sweet and so attentive to anything that would make him (and us) more comfortable. I think they would have moved the slushy machine into the room if they thought that he would like that!
Honestly, we were so impressed with everyone that we interacted with at the children's hospital. It takes a special type of person to work in children's healthcare, and the doctors, nurses, techs, radiologists, anesthesiologists...everyone...obviously loves the kids who come through their doors. We were so very blessed to be cared for by people who treated our son as their own.
On the way to radiology to check the coil placement: Caleb, Ashley, and Dana
Speaking of nurses...want to hear a good story?
So we were sitting in that observation room for six hours, keeping a pretty low profile. But it's inevitable that the "quadruplets" part comes out when people read any of our kids' medical paperwork. Okay, okay...and I kind of like getting to talk about what a blessing our kids are to us! Anyway, our nurse, Ashley, and her assistant, Dana, asked about our other kids, and Sean pulled up a photo of them on his tablet. They took the tablet out to the nurses station to show the other staff (with our permission) because it's a pretty unique family situation.
And then this super sweet nurse popped her head into the room. "Hi, my name is Elizabeth! I didn't want to say anything and bother you, but since the photo is being shown around, I thought I would. I've been a blog reader for about a year. I saw Caleb's name on the list this morning, and thought, 'I know these people!' So I hope it's okay that I stuck my head in." Oh my gosh...how FUN is that?! She let me know that she was able to give our nurses more info about our family based on what I've written on our blog (all public info, obviously) so that they were extra ready for us. SO thoughtful and kind of her!
Plus, I LOVE meeting readers in real life! So Elizabeth, if you see this, thanks for sticking your head in! It was so nice to meet you!
How is Caleb's Recovery Going?
Recovery? What recovery? Seriously, this boy has surprised us quite a bit. He was a pickle at the hospital because he didn't want to hold still, but once we said, "let's go home," we got a big smile out of him. We were originally told to be prepared to spend the night there for observation, but he was released the same day instead. We were home by 6pm that night, and he immediately started walking around and playing.
Other than being a little more tired than usual as the anesthesia effects wore off, you would have never known that he had been through heart surgery to correct a defect.
Mommy, Caleb, and Daddy
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