Catching up and Reminiscing

September 25, 2008
Well, Ella's mouth continues to improve. The hole that appeared on the side of her palate seems to have closed back up (hopefully for good). All of the tissue that was used to fill in the hole in the center of her palate has fallen out, but it doesn't look like it's a total loss. The donor tissue pulled her own tissue towards the center and it looks like it may have been enough to close it. I saw a small hole towards the front of her palate, but the surgeons that saw her today (in Chicago) said the surgery was a success. (Either they didn't see the hole I saw or the hole has since closed over!) Now on to speech therapy!

Ella is SO glad to be able to eat normal things again. Mary has been SUPER jealous that Ella has been allowed to eat ice cream, pudding and jello for dinner!

Every time I have written the date today, I kept thinking there was some significance to this day but just couldn’t remember what it was. It just hit me! It was one year ago today that we received the call telling us that there was “a little girl that needed a new Mama and Baba”. One year ago today I first saw the face the beautiful angel who was destined to be my daughter. It could not have been a more perfect match for our family. I will never forget that phone call and how my life changed so much the instant I saw Ella's sweet face. She has changed so much in the nine months she has been home. I swear her personality GROWS with each day that passes. She is energetic, vibrant, happy, fascinating, inquisitive and loving.

Here is her referral picture (the first time I saw my beautiful daughter's face)


And here is Ella just last weekend


She is amazing, isn't she?

The worst case scenario...is reality

Ella has been slowly recovering from her surgery and was actually doing well, until last Saturday. She was super fussy while we were over at a friends picking vegetables. Completely unconsolable. When we got home, I gave her some tylenol and looked at her mouth. It had been bleeding some and a fissure now appeared in her palate, not where the hole use to be, but right next to the teeth line. It almost looks like it split open along where it was originally repaired (in China). Darn it! I started feeding her some soup and one of the times she opened her mouth to get another bite, I noticed something hanging down from her palate. Oh no! Oh, yes. It was a piece of the donor tissue that the surgeon had used to close the hole. I had her take her tongue and gently push it back up, but sometime during her nap it looks like it came out completely and she swallowed it.

I called the hospital and left message for the on-call surgeon. I didn't know what to do. I've never done this before! I had no idea what to expect. When he called back, he confirmed what I feared. The surgery was failing and there was nothing that we could do about it. I felt so bad for Ella. I can't believe we just went through that difficult surgery for nothing. The reality was that she was going to need the surgery again. Sigh. This isn't fair. I can't help but think "Hasn't she been through enough???". I'm so sad for her.

We received a message from the surgeon that actually did her surgery on Tuesday. He instructed us to leave the arm restraints on and keep her on the liquid diet through the 14 day mark. Yes, it's hard for little Ella to do anything and she is so tired of soup and applesauce, but with her mouth in flux right now, it's best. It stopped bleeding by Tuesday and was actually looking pretty good. Unfortunately this morning she spit out another huge piece of tissue. As the stitches disolve, the tissue is just falling right out. There is still a piece of tissue up where the hole was, but at this point I'm not expecting it to stay. The donor tissue just didn't adhere to her tissue. We are going to have to start over. Poor Ella. She's been through so much in her three short years. She deserves a break.

Here is a picture of her palate on Monday (before the second part of the tissue came out. You can see the fissure on the right side by her teeth.