Hi! My name is David.
I was born August 2, 2006 at 10:52am. I weighed 6lb 2oz. I am the first born in a set of twins. I was Mommy’s bladder dancer.
Mommy’s Turn
At my 18 week ultrasound (the big one that last forever) we went in excited to see our twins (I knew at 7wks we were expecting twins), and find out what we were expecting. Was it one of each? Two boys? Hopefully not two girls. Our Baby A – BOY! Sweet! At least we know it’s not two girls. Baby B – BOY! Sweet! Two boys. Boys are cool and like gross stuff. Shhhh… Mommy likes the gross stuff too. Boys are perfect!
After the tech got the exciting stuff out of the way she went back to taking her measurements and looking at all the stuff she needed to see. We noticed she was taking a long time on Baby A and had turned the monitor away from us. I really didn’t think much of it. Heck there is two in there, it’s crowded already. After she was done we saw the doctor who gave us the news. The tech was having a hard time finding all four chambers of Baby A’s heart and she couldn’t see the Aorta. To be on the safe side she was referring us to a pediatric cardiologist to be sure.
We saw Dr. Monica Goble not long after that who confirmed our worst nightmare. Baby A (then un-named) did in fact have a heart defect. He was originally diagnosed with Hypo Plastic Left Heart Syndrome (HPLH). In HPLH patients that side of the heart does not develop. His was as long as it should be but not quite as wide. Dr. Goble kept saying “I can’t believe the tech saw this, most techs won’t catch this kind of thing” needless to say we have the tech a huge hug and thank you. We were given the choice to terminate him. I’m glad we chose not to. The odd were NOT against him and we didn’t want to miss out on what could have been so we chose to keep him. We were referred to Mott Children’s Hospital in Ann Arbor.
In the following days we did lots of research on heart defects and babies and the odds are really good especially if you know about it ahead of time like we did. Most families don’t know until it’s too late because the techs are not trained for t his kids of stuff. But the more we kept talking about him the more I kept thinking of him as David. See… we had the names picked out but were going to wait until they were born to name them. But I kept thinking of Baby A as David. I voiced my opinion to Paul who had been thinking the same thing. So from then on Baby A was David and Baby B was Matthew.
The rest of my pregnancy was filled with a big belly, two wiggly babies and lots and lots of ultrasounds. To monitor their growth (It’s normal for twin pregnancies to have more ultrasounds then a normal pregnancy. Twin pregnancies are considered High Risk) and to monitor how David’s heart was growing. I traveled back and forth to Ann Arbor so they could keep their records going. Because of this defect I would be having my babies there so David would be where he needed to be for surgery when he was born.
My C-section was scheduled for August 2, 2006. Natural birth was not an option for me, not because of David’s heart but because my twins decided to lay sideways in me throughout the whole pregnancy. I had two heads under my left breast and two sets of feet on my right hip. David was born first, when they took him we heard him cry then disappear, they never showed him to us before they whisked him away to get him hooked up to all the garbage the hook sick babies up to. Matthew followed to minutes later, healthy has a horse.
It wasn’t until 9:30 that night that I got to see my first born and yes there were some nurses that got in trouble over that. David had all kinds of wires and tube hooked up to him. He was on meds, monitors and oxygen. It was scary to see your brand new baby hooked up like that. We learned shortly after that, they did not have HPLH but had a cluster of defects called Shone’s Complex. Most doctors will not know what that is. Cardiologist will. It’s ASD, VSD, aortic septial defect to name a few.
David was five days old when he had his first open heart surgery. Dr. Bove, a world known pediatric cardiologist surgeon was my babies’ doctor. The man had HUGE hands and worked on such a tiny heart. David spent a week in the PICU. This was a huge learning experience for us. We were new parents, to twins, one who was sick. I should have been at home resting bonding with my babies but I was walking around a hospital. My incision didn’t heal correctly because of that.
After a week in PICU David skipped moderate care and went right to general care. Then home three days later. We started our life as parents to twins. David had meds, acid reflux and would spew like a broken pipe. At 8 months we were back at Mott’s where David had a heart cath. His aorta was still too narrow. The procedure didn’t work. June 12, 2007 on our 3rd wedding anniversary we were sitting in a waiting room waiting for our baby to come out of surgery from his 2nd open heart surgery, he was only 10months old. We were only in the hospital about a week that time.
He wasn’t developing his motor skills as fast as his brother so we had Early On come in. Both boys did qualify for help but David needed it more. We couldn’t get David to gain weight or eat solids, he’d gag and puke. Early on helped, his poor tongue didn’t know what to do. He didn’t walk until he was almost two. He inherited my Dad’s flat feet and had to get braces for his feet. He’s spent two years in special education preschool. He’s still about six months behind developmentally from his brother but we are starting him in Kindergarten anyways. I don’t think the preschool was teaching him what he really needs to know.
Currently we are at a wait and see basis on his heart. We go for echo’s every six months. Right now nothing has changed but Dr. Goble is expecting in the next year or two he’ll need another surgery. Until then we go on as normal, treat him as a normal child, and pray. Pray that he catches up and keeps growing and makes us proud. He is a happy child, extremely happy. He is our difficult child, not in behavior but he’s just going to be difficult.
Luckily we have Matthew, who is so smart and easy, to balance it out.
