Monday, April 14, 2014

Happy Heart Day to Lilyann

Happy almost Heart Day to Lilyann!!!

Tomorrow marks the day, 6 yrs ago, that Lilyann went in for open heart surgery to have her VSD fixed.

When we found out we were having a little girl, we never realized how our lives would change. I was so happy to have a little girl. Everything during my pregnancy was going great! I was keeping off the extra weight (pregnancy can really pack on those pounds), my blood pressure was great (nasty culprit during my last pregnancy), and life was grand!
Lilyann Jade was born a chubby 7 lbs 1 oz. She was adorable ♥ And the best part, she latched on quickly. I was overjoyed. She was gaining a few ounces within the first week. By week 3, due to some complications on my end, we switched to formula. Lily was still doing pretty good. She slept a lot...a little more than what you'd expect from a newborn. But I was so frazzled with a newborn and an active 2 yr old at the time, this didn't register with me. By week 6, she was crying all the time. I was kicking myself in the butt for not continuing to nurse thinking the formula was messing up her tummy. After a weekend of her crying non stop, we took her in...thinking she had a blockage in her tummy or something. Little did we expect to hear the words..... "she has a hole in her heart." I remember just sitting there thinking..okay, it's a hole..everyone has holes in their hearts. I actually asked "Is this serious?" Of course, it was. 
Lily's weigh in at that 7 week appointment was 8lbs. She had only gained 1 lb over her birth weight in 7 weeks. The dr sent us home with a promise to call us after she had appointments set up for us. Appointments for an echocardigram for Lily. We struggled through that. I think the same of that appointment, we were scheduled to see a pediatric heart specialist in Dallas. This is all happening within 48 hours from our initial doctor visit. It was a crazy whirlwind of events. 
After seeing the cardiologist, we had some hope. This condition (Ventricular Septal Defect) could correct itself. But the odds were against us since Lilyann was not thriving. Remedies were made to help boost her intake calories and she was put on heart meds to help strengthen her heart and reduce fluid around the heart. 
Finally after an unsuccessful attempt to get her weight up, she was hospitalized for Failure to Thrive. A feeding tube was inserted and she was in the hospital for 12 days to get her back up to where she needed to be. Talk about scary time for these parents. I'm not sure when it was, but Jed and I made the decision to just do the surgery. If anything, it would help her. Making a decision for heart surgery for your small newborn is by far one of the hardest decisions that we had to make. But it was the best decision.
I remember sitting in the holding area with Jed just holding her. It was that surreal feeling...I could see us sitting there questioning ourselves if this was the right decision. She's so small. But we were also as calm as we could be for each other. Handing her off to doctors, nurses, and anesthesiologist was hard. Tears came. But it was for the best.
5 hours later, we get the news. The surgeon is sewing her up. It was successful. The hole in her heart was a bit larger than they expected. 11mm. 
I can't begin to thank all the people who were influential in helping us that day. Their prayers, kind words, generous gifts, calls, texts, and hugs....definitely showed these parents that we had their support. And God was big enough to handle everything. 

As her 6 year Anniversary, or Heart Birthday (as she calls it), arrives, I'm remembering all the good things. I'd never wish this situation on anyone. But I look back and see all the good things, the things we learned from it all. Oh, we serve an Amazing God. We have a wonderful church family and fantastic friends and family who are rooting for us. 

 After surgery on her way to recovery

 The 1st time I got to hold Lily after surgery.

 On discharge day with her fabulous heart surgeon, Dr. Mendleoff

The lessons we learned during those 1st few months of Lilyann's life we will treasure and share with others. All in hopes of helping to ease just 1 mommy or daddy's mind that this is the right decision for their little one. My husband was my rock during that time. It was hard to hold in the emotions at times, but it helped to know that he was there. ♥ I know we all learned something during that last hospital stay. 

Happy Heart Day (almost, it's tomorrow) to Lilyann Jade. 6 yrs heart strong!!!

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