Dear parent of a hypoplastic left heart baby,
Our son Caelen was diagnosed in utero at 19 weeks. At first we thought, "why us?" As our pregnancy progressed, we began to think, "why not us," and started learning as much as we could. We interviewed three top hospitals and selected Children's National because of Richard Jonas, MD. We did our research on him and felt that our son couldn't be in better hands. He is one of the top 10 surgeons in the world for this condition. And his team of cardiologists, fellow surgeons, physicians, and nurses are all top notch.
So, what to expect? First, be prepared for a one month stay for your initial surgery, the Norwood procedure. Yours could be a little less, but it could also be a little longer. Caelen's stay was 6 weeks because he developed a GI infection called NEC. Now some hospitals/doctors will tell you their program is an average of two weeks for the Norwood. That is not normal, nor is it the average. Plan ahead, especially if you have another child or pets at home.
If you are diagnosed ahead of time, you will probably deliver at Washington Hospital Center. They have a great team that is well trained for your delivery and excellent initial care for your newborn. Your baby will then be transported to Children's National while you recover. But don't worry, you'll be over to see your newborn soon.
The Norwood procedure depends on your baby. Caelen had his on day three and his chest closure on day seven. Again, this varies with every baby. The nurses do their best to have you hold your child before the surgery, and then again afterwards when it is safe to move him or her- for us it was day 10. Most of the time though, you sit with the baby in Cardiac Intensive Care Unit (CICU) and stare because you can't hold him. So hold the hand, the head, the foot, or anything you can. Read to him, play music. Bring in an iPod with speakers or a CD player, etc. Bring socks and hats, that's about all he can wear at first. Bring blankets, religious items, etc. We brought a crib medal and the visiting priest gave us a rosary. Anything to make your baby more comfortable and that smells like you.
You may have read about "chest compression Amy" in another letter. She is just one of the shining examples of the incredible care you will receive at Children's National. There are too many to list, but trust in the team. Your child truly will be in the best possible care. The nurses, doctors, techs, and support staff are a jovial group in the CICU. Once I got over the severity of my son's condition, I learned to talk with the staff, listen to their stories, find similarities, and become friends with many of them. But most importantly, I learned to laugh. You are going to spend a lot of time in the CICU in the beginning just staring at your baby with nothing to do. You can't do much but watch the nurses administer meds, empty fluids, change diapers. One thing you can do though is laugh. Keep up the positive energy in your child's room at all times, when possible. Talk to your nurses about their day, tell funny stories, etc., but keep talking, your baby hears you and laughs are better than tears. Sometimes tears are necessary, they just need to fall. Don't be embarrassed. The nurses give great hugs! (Look for Carol.)
You see, the nurses and staff do so much more than just take care of your child. They take care of you too. Don't be afraid to ask for help, ask questions, or simply say, "I don't understand." Just remember to stay positive and trust that your doctors and nurses are doing their very best to ensure that your child gets healthy. Maintain positive energy in your child's room. It carries over to other children as well. It will help your baby heal and make the situation less stressful for them. And when the going gets tough, it's ok to step out of the room. Take comfort in knowing that your baby will never remember any of this, and focus on getting your baby home safely.
We wish you the best and please know that there are lots of parents that are here to talk with you anytime you need it. Lastly, here is the best encouragement that we received - God doesn't make mistakes. Your child was chosen just for you.
Katye & Martin - Caelen's parents