Monday, August 23, 2010

Our Story

A fellow heart mother started a blog event where we could all link our blogs to her page and share our stories of hope and inspiration as well as the challenges that we have faced on this journey.

Read the other stories here...

Many of you know Jacob's story, for those who do not here it is...

Jacob Dylan Baker was born via a planned c-section on March 23, 2010. At our 20 week ultrasound we had learned that Jacob had a severe congenital heart defect called Hypoplastic Left Heart Syndrome. He also had a mildly restrictive atrial septum. No one thought the restricted septum would be an issue since the echo seemed to show enough blood flow passing through. When Jacob was born things went downhill very quickly.

The first time I saw Jacob... almost 2 hours old

At first Jacob seemed ok. He was pink and cried, I was relieved. Within 2 hours his septum became intact and he was fighting for his life. Even on the vent his SATs dropped down to the 30s. They rushed Jacob into the cath lab to open the atrial septal defect. After what seemed to be forever we were able to see Jacob again. He was so sick. He was bruised all over because they had a hard time getting him out of me. He was on the ventilator and was still out from the paralytic. While waiting for his lungs to get stronger Jake also got 2 bacterial infections. This put his risk for surgery even higher. At 9 days old my husband and I were finally able to hold Jacob for the first time. That was also the day he had his first open heart surgery.

First time we held Jacob ( 9 days old)

Jacob did well in surgery however they had to leave his chest open due to possible swelling. They closed it the next day.

Jacob post-Norwood

My husband had to go back to West Virginia to work and he took our 3 year old with him while my mother and myself stayed with Jacob. Thank God we are blessed with such an amazing family there to support us.

It was discovered that due to severe reflux Jacob's vocal cords were swollen and red. He also had tracheomalacia which caused his breathing to be very rapid and he retracted as he breathed. At 4 weeks old Jacob had a nissen and a g-tube placement. The Nissen is when they wrap the stomach around the esophagus in order to prevent reflux. He had to eat through the g-tube because he breathed so rapidly he was high risk for aspirating.

Jacob spent another month at Children's Hospital of Philadelphia recovering and getting stronger. At 8 weeks old we were finally able to take him home.

Home with my boys (Daddy is taking the picture)

Jacob amazed us daily by gaining weight and thriving at home! His Glenn was on August 5th. Jacob is over 14 pounds and in the 50th percentile on the growth chart which is amazing for a hypoplast. During the Glenn they thought that maybe his atrial septum was not fully cut out so they went into the heart to check it. While attempting to cut more out there was a hole punctured in the back of Jake's heart. The surgeon was able to stop the bleed and stitched up the hole and everything else went well.

Day after his surgery

Jacob continued to amaze us all with his recovery. After 3 days he was only on Tylenol and was smiling again. We were home 6 days later. Jacob used to only take maybe 15mls by bottle and the rest in his g-tube. Since his Glenn he sometimes takes full feeds by bottle, at least half each time. He is also even starting to eat baby cereal. Jacob is still on oxygen although he spends a good part of the day now oxygen free. Occasionally he drops into the 60s and I have to put it back on but for the most part he is in the high 70s to mid 80s.

5 days after open heart surgery!

Jacob is a true miracle and I am so blessed and honored to be his mother!


  1. I have been following your blog for a while now and Jacob is an amazing little man. He is a fighter and doing so well! I am sure writing out his story brought back a lot of memories, but I am glad you shared it.

    I will continue to follow all of you and keep you in my prayers.

  2. Geez Kathy. The way you put it so succinct makes it seem like a breeze. Jake is so amazing. You give him such positive energy to live off of. You're a wonderful mommy! Aidan and Jake are lucky boys. XOXO.