Well yesterdays appointment wasn't too big of a waste although I wish I had all the answers. We did get quite a bit answered and some good news. The good is that her heart is sounding good, not worse which is what we had thought, so I was shocked. The bad is that we couldn't do the sedated ECHO since Lexi is still pretty sick. The ugly is that she is really sick, she hates life right now and wants to do nothing but cry and sleep. She won't eat, she won't drink....NOTHING!!! She is miserable and I am exhausted. She just wants to be held or lying in her bed and I feel so bad for her. We have gotten her nose suctioned out several times and it seems to help the most, but I am worried sick that she may end up being hospitalized. So we will head back down to Primary Childrens on March 24th for the sedated echo, please pray for her to be healthy and happy, I miss my baby girl!!!
We finally have a day to meet with the cardiologist and find out what is going on with Lexi. I am scared and nervous, but anxious for it to get here so that we can figure out what is going on. She goes in on Wednesday February 24th, 2010, it is a week earlier than our other appt. I will update once we are done. Wish us the best and please pray for my little girl. Thanks!!
This was a hard decision, I didn't want to seperate Lexi from the rest of my family, but with so much going on with her and trying to keep everyone updated I decided it was a good choice.
So a little background on Lexi for all that don't know.
Lexi was born 6 weeks early on May 13th, 2009, she weighed 6lbs 8oz, but got down to 5lbs 5oz and she was 19 inches long. I (her Mom) had to make the hardest decision in my life to deliver my little girl early, my incision was ripping on my uterus wall, so it was either deliver or take the chance at losing her and I. I didn't even blink, because I knew it was easy to fix a premmature baby, but not two people that have lost their lives. She spent two LONG weeks in the NICU, I feel like I missed out on the two most important weeks of her life. But she came home healthy and everything was good. On our way to leaving the NICU the Neonatologist stopped and told me I needed to take Lexi to see a cardiologist at Primarys. I really thought nothing of it, but followed up with her pediatrician who scheduled us an echo at Ogden Regional. I took her to her appt and heard nothing for awhile. In June, I was told we were going to lose my Husband who was born with a VSD and had gone to Primarys until he was 18. He had started having chest pains right before my daughter was born and so I finally had talked him into going to the doctor, they scheduled him an echo. What I thought would be a quick and easy procedure turned into the worse nightmare of my life. At first we were told he would need a heart/lung transplant and that was very likely he would find one, especially with his rare blood type. I cringed at the thought of losing my Husband and still do. After two weeks of nothing but test, we found out that a miracle did happen and that Bob's life could be saved with open heart surgery. My Husband underwent a 14 hour surgery on July 17th, 2009. Longest and most shocking day of my life. My Husband was diagnosed with Tetrology of Fallot, something that should and could've been resolved as a child. But he is doing really good today. During the same week he was having open heart surgery I finally received a phone call from the cardiologist at Ogden Regional saying he didn't want to touch Lexi's case and referred me to Primarys. I had no clue what she had or thought she had. But in September I found out my little girl has Pulmonary Stenosis with a PDA and PFO. I was sure what to think, I am new to this think, I am not sure of the questions to ask or anything. So here we are today trying to see what the future holds. Lexi today is a happy and smiley baby, she has brought so much joy to our lives. She has two brothers that think the world of her and she loves them just as much. I feel blessed to have all my family still here, life was rough last year, but I plan to make the best of it now.