First we just want to let everyone know we appreciate all of your prayers and kind words more than you know. We were completely overwhelmed with the number of family and friends that are reaching out to help us in any way they can. THANK YOU! Evan is going to need them for a while so keep on praying for him!
It's been a rough week. It's hard to focus on anything other than our sweet baby boy.. We have our appointment at All Children's on Tuesday at 2:30 for another fetal echo (ultrasound of the baby's heart) and to meet with our pediatric cardiologist, Dr. Nardell. I keep a notepad by my desk and I'm keeping a list of all the questions I want answered. We've also stopped searching the internet for answers. While there are many success stories, there are equally as many stories of babies who have gotten their Angel wings as well.. We are just trying to trust in the Lord that everything is going to be ok and wait to get our answers from Dr. Nardell. I'm at a lost for words for how supportive Scott has been for me this week. Amazing doesn't even come close. I feel guilty for leaning on him so much and relying on him so much when he is going through the same pain. But he has been by my side every second we are home together. And when I'm at work, he does his best to make sure I'm ok and has such encouraging words.. I can't imagine going through this with anyone else. I am so blessed to have him in my life. Last night was tough. I questioned our decision to go through with the surgeries, wondering if it was the right choice to make, or if it is really our choice to make. If God made our little man this way, why are we going to try to change him? But God also made all of these surgeries possible; He blessed the doctor's with the knowledge and skills to make these surgeries a success, and give these babies another chance at life. I feel like it's so conflicting! I feel like we are being selfish to put our son through these painful surgeries just to keep him here with us. Life on Earth is temporary. Our "real" home is in Heaven, is that where he belongs? I'm not being negative, I do believe in miracles and healing, but I can't help but wonder.. I don't feel right knowing Evan's heart fix is only temporary, and he will need a heart transplant later in life. What if Evan's our age, married with kids, and his heart stops functioning and he needs a transplant? I can't help but feel an overwhelming sadness knowing he could leave his children without a father..
We talked a lot last night about how we are going to manage caring for Evan after he's home. We have a lot of options, and we are going to have to make a lot of sacrifices, but it's only temporary and will be completely worth it in the end. As long as our son is healthy and home with us we are willing to do whatever it takes. Again, we are waiting to talk to Dr. Nardell and hopefully a hospital social worker before we make any definite decisions.
We have also decided to transfer my OB care to another doctor, even though a high risk OB will be delivering Evan at All Children's. For those of you that don't know, we believe our OBGYN office in Lakeland was negligent in our care. The ultrasound technician documented on the report for our 20 week ultrasound that a follow up ultrasound in two weeks was recommended because of the baby's heart, but that information somehow did not get to us. We aren't sure if the Doctor didn't review it or what the miscommunication was, but it was a HUGE mistake. Had we not decided to pay and have a 4D ultrasound last week, we would have not known Evan was sick and would have delivered at LRMC, only to either bring home a very sick baby or have him ripped away from us and flown to a children's hospital. I have already spoken to the Office Administrator to make a formal complaint and they are investigating the situation. Scott & I are still debating whether or not we will pursue any legal action. I, of course, would like to rip them to pieces, in whatever way I can. They put my child's life at risk and I will not let it go without fighting to make sure that never happens to another family at that office.
We will make sure to update the blog after Tuesday's appointment, and keep updating whenever we get any news. While we do appreciate everyone's concerns, it's hard to keep up with the phone calls and emails, it's easier if you check here first for an update. We are trying to keep everyone posted!
My sweet baby Evan,
You've been SO active the last couple days, it's hard to believe you only have half of your little heart. Your daddy and I watch you kick and stretch in my belly and it looks like you're trying so hard to get out! :) We already know you are going to be such a fighter and strong little man.. You have no idea how excited we are to meet you! We will cherish every single moment we spend with you, even when you keep us up all night. ;) Daddy and I were joking last night that it's going to be a race to see who can get out of bed first lol Your daddy came up with this the other day and we just want you to know that although we've never known you, we can't imagine life without you.
We both love you so much already, keep hanging in there sweetheart..