OK it's not really 4 letters, but add it to the list in my opinion.
Two words put together that I really dislike. It sounds awful. It scares me.
Well Ollie has been in the early stages of heart failure for a month. Last month we were put on Lasix once a day. Today we saw our Cardio doctor who is fabulous & he upped her to twice a day. He is seeing more symptoms of heart failure. Her liver is enlarged and she tugs more when she breathes. This just means she breathes harder. Her intake has also went down, but she's still gaining weight. Awesome.
I personally haven't noticed any differences in her, but I'm around her 24/7. Her loud breathing is normal to me, I'm used to seeing her eat the same amount even though it's less than it used to be. It went down when we started adding formula to her breast milk, or that's what I thought caused it. So...if this is heart failure, it's OK. I just wish they called it something else...anything else.
While in Mt. Vernon, I also met my blog friend Jamie
for lunch. She was very nice & sweet! I was thrilled to meet her! We both lost our minds & forgot to take a picture! Pray for her to find an awesome job soon!
We go back in May, and he will review her again, and schedule her open heart surgery. It will be in June probably around my 29th birthday. When he said those words today I thought Holy crap. She's 8 weeks old. Two months fly by so fast. I'm not ready for this. I am just not.
Someone may need glasses!
How do I get ready for this? I want to bawl when I think about it. How do I kiss her goodbye that day? How do I stand up straight when they wheel her away? I know success rates are amazing, but it's really scary. So many people are so lucky they never have to know what this feels like. I know there are people out there that still feel sorry for me that Ollie has Down Syndrome. Honestly I don't care about the DS. It doesn't matter. Her surviving this surgery, it's everything. It matters. Down Syndrome is nothing compared to open heart surgery in my book. It's definitely the scariest thing I will ever have to do. I have strong faith. I believe with every fiber in me that God & Jesus are real. I believe she will live through this. I just don't want to live through that day. I want to fast forward through that week.
...but I can't. God is teaching me a lesson. A lesson in faith. A lesson on what really matters in life. A lesson on how to trust and be patient.
Please continue to pray for our family. I need the strength, I know I am weak. Pray for her surgeons & nurses, their hands do God's work. Don't feel sorry for us, we are living God's plan for our family no matter the outcome...just pray for us.
By the way, Courtney, Christy, Becca - you guys have done this & I can't thank you enough for your support & guidance! You are great friends & Moms!