Gracie has a new accessory. Lucky for her she only has to wear it when she sleeps. Her oxygen saturation levels have been dropping at night (and when she eats) so we will be doing some tests in the next few weeks to figure out what is going on. In the meantime she gets to acclimate herself to her new O's. 
She aspirates when she eats (every type of food from plain liquid to solids) and because of that ends up with pneumonia about every 4 to 6 weeks. Her pulmonologist thinks that there is scarring in her lungs because of this. So we are waiting to schedule her sedated CT scan. On Monday, she will have another echo done to make sure that the low oxygen levels over a long period of time have not caused damage to her heart. Her heart murmur has been more pronounced and she has been sweating a lot when she drinks a bottle. Also, her skin has been looking a lot more mottled. But hopefully everything will be okay there. We will keep you posted! Grant has been so cute with Grace (as usual). He will often ask me if Grace needs her oxygen and whenever I put her down for a nap or to bed, he tip toes in to check on her. She is lucky to have such a great big brother!
Speaking of Grant, a few weeks ago, Hadlie and baby Kennedy came to visit us. Grant was so happy to have someone to play with. Building forts is a lot more fun when you have someone other than mommy to build them with!
Plus, Hadlie can fit inside a lot better than mommy can! He is killing me lately...he hates me to take his picture!
8 comments:
Ivy still has to accessorize with oxygen every once and a while. I hope everything turns out okay, and you guys are able to figure out whats going on. good luck.
Only your Grace could make oxygen look that cute. But I hope the doctors will figure out everything soon, because that can't be very fun to wear at night. Your kids are beautiful! (even when they hate getting pictures taken!)
Praying all looks good with the echo and CT. Gracie sports her oxygen cannula beautifully:)
I hope that everything turns out alright, O2 needs can certainly come and go. My daughter still gets yearly echos for her heart defect. So again, I hear ya. Best of luck...
I wish we weren't so far away. We'd love to come steal Grant for the day & build some rockin' forts. Our prayers are with you guys. Oh, and I totally agree with Calley; only Gracie could make oxygen look so adorable.
I just wanted to let you know I was thinking about you guys too...hopefully everything turns out for the best! You do have some adorable little kids...{{HUGS}}
I really hope Grace will turn a corner soon and you can get some answers. You are so strong to take it all in stride and not overreact!
Kiara has become the same way with me when I try to take her picture and it bugs me to the core (which is probably why she does it)!
Only cool people get to accessorize with oxygen tubes! :0) When I was sick with my blood clots I had to wear one for 3 months 24hrs a day. Keep us updated on how the testing goes. We love you!
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