Perfect, Incomplete Hearts: KJ and Kamdyn's Story
Updated: Feb 9
Our sweet boy was delivered at St. Vincent's Hospital, located downtown Toledo OH. The delivery was a whirlwind to say the least, but we both pulled through, obviously. My husband Karl and I at the time, lived in Perrysburg OH which was about 15-20 minutes from Toledo. KJ was beautiful....he was eating well, weighed a little over 7lbs, and was doing very, very well. I would stare at him as he laid in the NICU, and would think, "what could possibly be wrong?”, “what they're saying about you can't be true!”. Mind you, by this point Karl and I already knew that KJ had a Congenital Heart Defect (CHD). At his 20 week anomaly check, the doctors and nurses speculated that something wasn't right based on the images that they were taking of his heart, during the the appointment. We were eventually sent to a specialist, and sure enough, it was confirmed that our boy had what they called a "Double Outlet Right Ventricle Heart" (DORV) or another medical term would be "hypoplastic left ventricle". Karl and I were oblivious to it all. When I think about, it's kind of laughable because we were so clueless as to what we were in for once KJ arrived March 13, 2015 at 5:25 AM.
He started changing
As the minutes, hours, and days past, KJ began to show characteristics of a DORV heart baby. The dark eyes, dark lips, and heavy breathing was a valid giveaway that there was something going on. He remained in the NICU for about a week or so before we could take him home. When the day came for KJ to come home, we were so very happy, but scared all in the same breath. Besides the obvious of being first time parents, we were scared that something was going to happen while we had him. He was sent home with a ton of medication. Our thoughts were like, "what if we don't administer the medications right?", "What if he stops breathing?". We just had so many concerns and so much anxiety!
Exactly 2 weeks from birth...
...we were on our way to CS Mott Children's Hospital in Ann Arbor MI. KJ was about to undergo the first, of 3 surgeries that he would receive within his first couple of years of life. Exactly 2 weeks from birth, KJ was heading towards heart failure, and he needed surgery right away. He pretty much had stopped eating, and and his breathing was really fast. I think the hardest part at that particular moment was knowing that my child was fighting to
breathe, and there was nothing myself nor his dad could do to make it better. OH! Don't get me started on when we had to hand him over to the nurses and doctors. It was so hard, so devastating, but we trusted the Lord. He was all we could lean on, and we did just that.
FAST FORWARD...FAST FORWARD....
KJ received a second surgery at 11 months while we lived in Ohio. By his third and final surgery, we had moved to Charlotte NC. However, due to the the bond, and trust and we built with CS Mott, we decided to travel back to Ann Arbor to allow them to perform the last and final surgery. Kj is now 5, and will be 6 shortly. He visits his cardiologist only once a year, and he's on no medication. However, he does take aspirin daily as a blood thinner to prevent blood clots.
KJ lives a normal life as a little boy. He's on track with physical growth, and loves french fries and anything that tastes good. He's in school, loves Thomas the Train, Lightening McQueen, and Toy Story. However, he does have autism, and was diagnosed with a developmental delay earlier on when he was around 2 or 3. You can only imagine with all that he went through, what it did to his body...his brain. We were told prior to the entire process, that when it was all said and done KJ "may" deal with some cognitive delays. This indeed came true, but he's doing well, thriving, and making strides daily. He has occupational therapy twice a week, and speech therapy three times a week. Prior to COVID we were in the process of starting ABA therapy, but we put it on pause due to the pandemic. We're not sure what's in-store for KJ's heart. As he gets older, things are going to begin changing. He may even need a transplant, but we sincerely don't even think about it. In the meantime, we're going to just continue to love on his "perfect, incomplete heart" and trust that Lord will continue to take care of him.
Love you, KJ
I just can't un-see the facial expression of the cardiologist, when he had to share with us the news that our second child has CHD. He knew sharing this information with us was going to be devastating, and it was. He was aware of what we've been through, and KJ was actually a current patient of his. He then proceeded to share with us that our baby has what they call "Tetralogy of Fallot ". We left the office, and I completely fell apart. I lost my composure and it required my husband to help me get it back together...but I couldn't! One thing that kept being tossed around was "this process will not be bad as KJ's". They kept saying that, and I felt their point was to give us comfort. To be honest, it did but at this point, I'm just trying figure why are having children with heart abnormalities?
Finally! My girl arrived December 22, 2018 at 12:18 AM, 6.25 lbs at Novant Presbyterian Hospital, Midtown Charlotte. Compared to KJ, labor went way smoother (outside the fact that I had to throw up one good time...but that was it). Everything went fairly smooth. No NICU...no medications...nothing. They even allowed her to stay in the room with me. I'm thinking to myself, "so does she have the heart issue or not?". It was too easy in comparison to KJ. I would think, maybe the doctor's made a mistake! She's perfect...
She started changing
Well, not exactly. The only major thing we saw was, Kamdyn would get fatigued fairly easy. Especially after she would cry! It would almost seem like she ran up a flight of stairs. That was it! No discoloring, no change in appetite, but some heavy breathing. Let me be clear on something. Kamdyn did not receive the short end of the stick regarding her CHD. She actually has a mild case of Tetralogy of Fallot, BUT it still required open heart surgery.
Exactly 8 months from birth...
We were heading Uptown Charlotte, to have Kamdyn's heart surgery done at Levine Children's Hospital. All I could do was to ask the Lord to let His will be done, and to continue strengthening us during this process. Even though Kamdyn's heart surgery wasn't as traumatic as KJ's first surgery, the same feelings that I had were still present. My child still has to have her chest split opened for hours, and she has to be placed on a bypass machine. Those same feelings came back. It was like a never ending nightmare.
Aside from Kamdyn being in the hospital, the other difficult part was the lack availability we had for KJ, as his parents. His first day of school was coming up and his sister was in the hospital. That's all we could think about. We also witnessed some odd behaviors from him, but it was likely due to the fact that things were just different around him. Home was a little different, his routine was different. The great thing was, we had an amazing support system. Both set of grandparents were present at the same time, and both played a major role. Kamdyn recovered beautifully, and we were out the hospital in no time.
Kamdyn is as normal as normal can be, with a pop of sass! She just turned 2, and she's on NO MEDICATION, NO ASPRIN...NOTHING! She is on track with her growth physically and cognitively. She runs, jumps, skips, crawls, and gets in a ton of trouble, daily (lol). Along with her brother, she visits the cardiologist once a year. She will likely have to undergo one more procedure when she gets much older, but nothing anytime soon. In the meantime, we're going to just continue to love on her "perfect, incomplete heart" and trust that Lord will continue to take care of her.
Love you, Kamdyn