Saturday, December 19, 2009

Children's Hospital of Philadelphia

After learning of our sons diagnosis and spending a few horrible weeks feeling helpless we decided to pursue the surgical option and find the best hospital we could. I found that the top two hospitals for HLHS were Boston and Philadelphia. I have family in both area's!

I had them each review our heart echo's from Cincinnati and they both agreed with the diagnosis. After talking to them both we decided to go to Philadelphia. It is 8 hours away instead of 16 and my sister lives there so I could stay with her some of the time. Plus the nurses and doctors were amazing and I really like that they have a special delivery unit. I will be able to deliver there and be right down the hall from our baby. I have to have a c-section so the thought of being close really appealed to me.

On December 14th I went there for my first consultation. They did another heart echo and a maternal oxygenation test to see how his lungs would react to the oxygen in the blood. As usual our little guy was super hyper and moved around constantly. The ultra sound tech would get a great image and then he would throw his arm over his chest lol. He wore himself out though so he was sound asleep for the oxygenation test which gave them great pictures.

They told us that his atrial septal defect had not gotten any worse it was only mildly restrictive so as of right now they wouldnt need to do a heart cath immediately when he is born. This puts his odds of survival at 93% provided that doesnt get worse. His lungs reacted very well to the oxygen which was also great news! Go Jacob!

We also met with a social worker there and discussed how we were coping as what we should expect and lodging options. I know Jacob will be in great hands there. They have great statistics and perform about 100 of these operations a year. Jacob will be in the Cardiac Intensive Care Unit for the first few weeks. He will have his own nurse. I was happy to hear that only 20 percent of the babies need to come home with a feeding tube and their heart transplant rate after surgery is very low. They discussed the medications he will be on and some of what to expect once we are home. We will have to monitor his oxygen levels, weight gain and take him to the cardiologist every 2 weeks. He will need heart cath's prior to each subsequent surgery. Overall it was a very reassuring visit and I couldnt say enough about the doctors and how great they were.

I will be going back every 4 weeks to keep an eye on the atrial septum. They will do a heart echo and oxygenation test every time. Our next visit will be on January 15th. We have a full schedule planned. I will be meeting with the OB staff to discuss when I will be going up there to stay and what the birth plan will be, I will have a full obstetrical exam, a 2 hour anatomy scan, a heart echo, an oxygenation test and a fetal MRI. We will also meet with the cardiologists again and take a tour of the whole cardiac unit and hopefully the Ronald McDonald house so I can see where I will be staying while the baby is recovering.

I will write again after the 15th of January, until then please keep Jacob in your thoughts and prayers!

Jacob's Mommy


  1. Hello Kathy, I am a friend of your wonderful mother!!! I just wanted to let you know that you and baby Jacob are in my thoughts and prayers each and every day. Never forget that our Awesome God works miracles and I am sure He is watching over you both.. May He bless you with strength and courage and understanding...Vienna Lemasters

  2. I just saw your blog today for the first time. I am sorry that you have to endure this difficult journey ahead of you. I have been there. My Lauren has HLHS and she is almost 16 months old. We are so blessed, but it was a difficult journey I would not wish on anyone. She has spent a total of 9 weeks in the hospital, including two heart surgeries and one fight with bronchiolitis. She is off oxygen, off her feeding tube, and will be walking soon! Just typing those words makes me cry. It will be a difficult journey for your family, but will also be the most rewarding and meaningful time in your life. I wish you strength and peace and please know that so many people will be thinking about you. Even when you feel alone, you will not be alone. Please feel free to contact me anytime you need to vent! Jessica Makuh,