Our Heart Journey Thus Far

April 20, 2008

The nurses were trying to help me nurse, Lo wasn't latching on, we had visitors and then the phone call came from Dr. Bonnett. All I really remember about it is that he said there was a problem with her heart and the Pediatric Cardiologist would be coming to talk to us about it. The nurses came in and whisked her off to the NICU.

Those few hours after we met with Dr. Shuler before she was flown to MUSC were the longest ever. When John and I got up to see her in the NICU I wasn't prepared. She was fussy and had lines coming out of her bellybutton and we couldn't hold her. The flight crew had just gotten there and were getting ready to take her in her little incubator and fly her away. (I'm getting teary just writing this.)

That night I called down to the PCICU at MUSC and they told me she was fine. I could hardly sleep and couldn't wait to get out of the hospital. I broke free the next morning and John and I, my mom and her friend drove down to Charleston to see Lo. She was in her little bed and we couldn't do anything. She had IVs and lines and was swaddled. She wouldn't take a paci, only if it had sugar water on it. John's parents started driving down to SC that morning and got into Charleston at 10pm that night. John took them over to see her. It was sad that the first time they saw their granddaughter was in PCICU. They stayed with us that week while we waited for a surgery day.

April 24, 2008

Surgery day. We were able to hold her again before she went to surgery. It was so good to have her in my arms. Then I had to watch them wheel her away to surgery. Her anesthesiology nurse looked like Meredith Grey from Grey's Anatomy so I thought she was ok. :O)

She did well through surgery and moved up to 7C. We learned all about our new baby and how to feed, diaper, bath, etc. Finally May 1, we were able to come home.

We saw her pediatrician, and her cardiologist and saw her cardiologist every 3 months. She did well throughout the year. December was rough and we were in the hospital for RSV and then after Christmas she had the stomach bug.

June 2009

Dr. Shuler, her cardiologist, thought that she might need a sedated ECHO to check out the function of her heart. We went down to MUSC July 9 to have it done. They decided that she would have to have another surgery because her aortic valve was not growing very much and she had some extra tissue that needed to be cut out. We were worried that she would have to have something called the Ross Procedure but they didn't have to do that. The surgeon would have to go and cut out the extra tissue.

September 21, 2009

Lorelei's second surgery. My mom and John's parents were there again and again she came through just fine. We went in to see her the next day and she was still intubated but trying to wake up. She would cough with no sound and I had to leave the room at that point. It was terrible. Finally the extubated her and John's mom held her most of that day. She was very uncomfortable and I think we finally realized that she was cold. She spent the week in PCICU because there was no room available on 7C. We were discharged from PCICU that Friday, so all in all we spent 5 days there, much shorter then the first time.

She is continuing to do well and we will go to Dr. Shuler Feb 17 for her next appointment. They will still continue to monitor her valve and make sure the growth isn't growing back. If her valve doesn't grow or the tissue grows back she will probably have to have the Ross Procedure.

She still has night terrors and hasn't slept through the night since her surgery. We have tried really hard to just let her cry it out but sometimes its just heart wrenching. I am sure there will be more ups and downs with her heart but for right now we are looking up, but we are still praying for others that are awaiting surgery or might need surgery in the near future.

We didn't know that our child had a heart defect when she was born and there are many people that had the same thing happen but they went home and their children had to be brought back to the hospital before they knew what was going on. This is why we need to raise money for CHD research. If we could save one more family from having to go through this heartbreak, it would be worth it.