"I can do all things through Christ who strengthens me." Philippians 4:13
This is my new favorite verse, it's short which I love because I can remember it, and it says everything I need to get through each day! I was reminded of it this week in one of my daily devotions and it came just at the right time; I don't need to be scared because I know that God will give our family strength to win this battle. Even if I have to recite this to myself three times a day everyday it helps me to know and remember, God is right beside us!
I start with this verse because the last few weeks have been "two steps forward one step back" type of weeks. Madi is still intubated and every time we think she's about to get the tube out, something comes up that sets her back :(. It's been frustrating to say the least but it's so helpful to remind myself how present God is in our lives. Literally everyday something happens that lets me know He's here. Its so awesome :). That said, Madi is doing very well, she's come a long way over the past six weeks. She was so sick you guys, we never really knew how sick she was. Even way back at her first birthday she was sick, we just didn't know because she couldn't tell us and she compensated so well. That's why it's taking her longer to get better this time around, she really needed her Berlin heart and God intervened before it was too late. Her lungs were sick, her heart was very sick and she just kept on goin till she couldn't anymore, but now that she has the help she needs all of that is slowly getting better, it just takes time, soon I'll get to scoop all 14 pounds of that little squirt up in my arms, I can't wait!
I can't even tell you how sassy she is! It's so funny! Everyone has noticed how big her personality is, and how strong this little peanut is! She actually sits up in bed on her own with a breathing tube down her throat! Her physical therapist said she has never seen a kid do this before and be so content and playful while being intubated. She's so strong it's just jaw dropping actually. The other day we filled up a bin of water and she played in the bubbles like a crazy girl, her surgeon even came by to try and play with her and she glared at him like "excuse me who are you and why are you touching my bubbles?". Lol, it was pretty funny!
Anyway, her lungs are a little congested with extra fluid so we've taken away some meds, added some others and that should help, once they're dried out then she can get extubated, hopefully soon!! Once she's extubated she can get up and movin, which will be so much better for her stroke rehabilitation. We've seen some really nice movements from her left arm and leg which is so awesome! We have to hold down her right arm and leg to make her move the left but if she really wants to she can, which is very reassuring!
It seems so normal to be talking about all this stuff because it's just our everyday life but on the rare occasions when I do actually leave the hospital I realize this is so not normal! Our life consists of ventilator settings, oxygen saturations, physical therapy, echo's, chest X-rays, fluid balance.....the list goes on and on, but out there the world is still going on, everyone is living their lives and I am reminded how real this all is; yes my baby is really sick and yes she is fighting for her life each day, she's waiting for a heart transplant!!! What?? Sometimes, it seems so normal I forget how serious this all is! I was reminded last week when a 7 year old boy lost his battle with congenital heart disease. He had been fighting for so long and the Lord called him home. I had met his mom and although I don't have a clue what it feels like to lose a child I do know that it scared me, I do know that Madison and this little boy have a lot more in common than any other normal babies out there, I do know next to him Madison has been here the longest. This all just makes it too real, that yes children do lose their battle with CHD and families have to go on without their precious babies, it's just too close for comfort. It made me stop and realize how easily that could be us. It made me realize that although I get frustrated with "two steps forward and one step back" at least we're moving forward, even though I cant hold Madi now, at least I will get to soon. And most of all, I dont know what tomorrow will bring so I'd better darn well live for today! I find comfort knowing that this boy who was our ICU neighbor at one time is no longer in pain, he is no longer short of breath, no longer too tired to even hold his head up, now he is running, playing and enjoying his time in Heaven until his family arrives. Our future is uncertain, nothing is a guarantee, it is my job as Madison's mom to live for each day and remember that this is only our temporary home! (but I'm selfish sometimes and want her here with me forever.....I'm working on it :)
Hope this update finds you all well! As always, thank you for your thoughts, prayers and love! We couldn't do it without you!
Love Tabi
