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Jacob Daniel |
At Riley, he was diagnosed with a serious heart defect, HLHS. We were given three options.
- Take Jacob home and do nothing for his heart. This is called comfort care.
- Heart transplant.
- Series of three surgeries.
We decided that the surgeries were the best for Jacob. He had his first stage surgery 7 days after birth. Everything seemed to go very well! He had to be on a ventilator. He had 2 chest tubes and lots of meds. His sternum was left open because of swelling.
On October 8, 2000, Jacob had a bad day. He coded! This was 2 days after his sternum closure. Jacob had a lot of pressure and fluid build up. This was why he coded. They gave him 2 more chest tubes, for a total of 4, and hooked up his pacer wires.
Jacob got to go home Oct. 29, 2000! He had some feeding problems. He went home with an NG tube. We never put it back in. We instead fed him every hour until he got the hang of things. Jacob weighed shy of 6 lbs. when he came home. He now weighs 13-1/2 lbs. Jacob is a very happy baby! He is full of smiles. He loves his older sister and brother. He doesn't miss a thing, very alert. We feel very blessed to have our children.
Sometimes you don't know how precious life really is until you have to witness your child and others like him fight so hard to be here.
We love and are grateful for all the wonderful Doctors and Nurses at Riley Hospital! Especially Jacob's surgeon, Mark Turrentine, and cardiologist, Anne Farrell.
--- Crimson and Jake, Jacob's Mommy and Daddy (Indiana)
Update: May 29, 2001
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Jacob is eight months now! He had his Hemi-Fontan on May 8 2001. Everything went really well! He did have four chest tubes again but other than that everything was fine. Jacob was only in the ICU for two days and was home in seven. His surgery was done by the the same surgeon as the Norwood, Dr. Turrentine of Riley Hospital for Children.
This second surgery has made some big differences in Jacob. The second day Jacob was home he walked in his walker! He could hardly hold his head up in the thing a month before. His color has changed a great deal. He has PINK legs, feet, and fingers!
Of course Jacob still has that beautiful and unforgettable smile!
Update:
October 23, 2001
Jacob celebrated his first birthday on September 15, 2001! It was such an emotional day for us. He was surrounded by close friends and family. The theme was Veggie Tales, his favorite cartoon. He had his own personal cake. Of course he made a nice mess of it. He loved every minute of it! He got his first toy box, toys, and clothes. He also sent two balloons to heaven for a couple of his HLHS angel friends.
Jacob is doing very well. He is starting to attempt walking. He does
a lot of cruising holding onto furniture. It shouldn't be long!
Update: April 21, 2003
It's been a long time since we have added an update on Jacob! He is doing great!
Jacob had his Fontan on October 16, 2002. It was performed by the same surgeon, Dr. Turrentine at Riley Hospital. Of course our hospital stay did not go as smoothly as we had hoped, but as you can tell you cannot predict anything that goes along with HLHS. The surgery part went just great! Jacob spent two days in the pediatric ICU, then off to the heart floor we went. Jacob had just two chest tubes after this surgery. Both were in the central cavity of his chest. After two weeks they decided to remove the chest tubes. Of course keep in mind this could not go as planned.
After about two days without his chest tubes, Jacob's right lung started to fill back up with fluid. It was such a bummer! Jacob had to have a chest tube put back in on the right side. He drained several cc's the first night. It was so unbelievable how much could come out of such a small body! It just kept draining and draining. Jacob was on a strict fluid and fat restriction. It seems like the doctors tried everything they could to get it to stop. They even tried a new procedure with nitroglycerin. The only thing that really worked was TIME. After a four and a half week stay we finally got to go home without plural effusions and just in time for turkey on Thanksgiving.
Jacob has done very well since we have been home. He had a touch of pneumonia this winter but he got past it. He is very active full of life, and oh, we can't forget to tell you stubborn!!
Sometimes I wonder what if we wouldn't have chosen the surgeries for Jacob and just chose comfort care. I can't imagine missing out on the milestones he has accomplished.
In my mind, Jacob is the Olympic runner with the torch. He is smiling, running proud, and is honored to be Jacob. If, one day, he has to pass his torch to another runner. I know that the miles he ran were well worth it! He has given pride, knowledge and love to surgeons, doctors, family members and friends. As Jacob's family, we are so proud of you Jacob. We are very honored to help you carry such a torch. No matter what path you run, there will always be an eternal flame in our hearts just for you. We love you!
As for C.H.I.N. you are so great! It's so wonderful to be able to go somewhere with questions and to get answers from people who have been in your shoes a time or two. You are super!
