13 Days and Counting....

Surgery date- July 20th.

Yep, that's the day we will hand our precious baby girl over to the surgeon whose hands will be guided by Our Father to mend her heart. I hate these days leading up to surgery. I find myself repeating "total reliance" over and over in my head all day. That's hard for me. Total reliance. I am soaking up every single breath of her's and staring into her brilliant blue eyes every minute that I can.

I won't lie. It seems like this time around is harder for me. Is it because I know what lies ahead for her? Is it because she has so many other medical issues and is still so tiny? Who knows. I do know that many tears will be shed and many prayers will be prayed early in the morning on July 20th.

These past few months have been somewhat of a blur, and I can't remember how much I have shared about our angel. Obviously, she has Down Syndrome.:) She also suffers from reflux thus one of the reasons for her GI issues (I will elaborate more in a minute). Her heart- Celia has a total AV Canal defect which seems to be the most common in children with DS. Charlie's was not an AV but instead a Gerbode Defect. Look it up- what are the chances?!:) Celia's PDA is also very large and isn't closing like we hoped. So, what does this mean for surgery? There will be some pretty major reconstructing going on. Her main hole is HUGE! So large that when the hole opens, it encompasses most of all 4 chambers of her teeny heart. Because the hole is so big it also affects both the mitral and tricuspid valve. They will both require some work to get them properly working again. And the PDA? The surgeon will close it for her. In theory, Celia should be in the hospital for less than a week, but we all know how that could change at any moment.

GI- Reflux. Yuck! Not yuck because I don't like being spit up on all day but yuck because my heart breaks everytime she does it. For around 3 months, Celia had an NG tube. Not fun for her, but at least she was allowed to eat as much as she possibly could orally for 20 minutes. I could also reinsert the tube if it came out.....and it did come out! She was never really a "spitter" but we knew when she was refluxing and occasionally something would come out. Early May we had a swallow study done and discovered she was aspirating. NPO- no per oral. That's right! I had no idea that morning would be the last time I was able to feed her a bottle. I would much rather be spit up on all day long than not be able to feed her. It breaks my heart. At a routine GI visit near the end of May, I expressed my concerns about her color changes. Not a good sign when your baby turns white/grey/blue around the mouth. Since the NG tube was in her stomach and food would collect there, Celia was able to continue to reflux and began aspirating (color changes because she couldn't breathe) on that formula instead of just oral feeds. In went the NJ tube. The NJ stinks because if it gets clogged or comes out, down to the hospital we go. And we've been.....quite a few times.....over an hour away. They know our names now!!:) And that's where we are today. It all began because of her reflux and poor weight gain due to cardiac issues. I am thrilled to say now that our sweet, sweet girl has hit the 10 pound mark!!! And yes, she is about 4 1/2 months.:)

Please, join us in prayer for our Celia. She is about to enter into battle and could use many warriors standing around and with her. If you would still like to send her a Love Letter, email me privately and I will share details. THANK YOU to each of you and your children who have sent such beautiful scripture, prayer and pictures for us to hang in Celia's room. (Mattie even sent one himself!!:) And most importantly, thank you for loving and praying for our girl.

In Him,

E