I just have to say how impressed I was with the facility at Arkansas Children's Hospital, the doctors, the nurses, and just the overall care we received there. There was one minor uh-oh moment, when we were first admitted. The nurse looked at the chart and asked if Zoya had any other chronic health conditions other than cystic fibrosis. "Cystic Fibrosis??!! Ummmm....No, definitely not that. Next day I realized that her hospital band said "C F" next to her name.....caucasian female.....haha. Minor oops there!
Otherwise we were really happy with everybody and everything there. I was so glad I took Jude along. He was a tremendous help. John and the others held down the fort at home. Thanks to the Lorraines for letting us stay the night with them. Love their beautiful family.
On Monday we saw the whole cleft palate team. Everybody agreed that a feeding tube was necessary at this point. Below is a picture showing where she plots on the growth chart. As you can see she is way below the normal range for both her height and weight. In a little over four months she has gone from...and these numbers are fully clothed.... 21.5 pounds to a current 22.8 pounds. This is an average weight for an 18 month old baby. In order to even be in the bottom 3rd percentile for her age, she needs to gain at least 8 more pounds. Can you see the little dots that look a little bit like ants? That is the teeny tiny bit of progress we made at home these last few months-----the product of many mealtimes full of tears and tantrums. Sigh.
Anyhow.....she was scheduled for surgery the next day and now has a wonderful, glorious feeding tube!! I never thought I would be so happy and relieved about a surgical procedure as this!
The geneticist pretty much took one look at her and said his first guess is that she has fetal alcohol syndrome. With her history, and some of her facial features it was his best guess. Now there is no test to diagnose this, so basically everything else must ruled out before knowing for sure. Blood was drawn to test for multiple genetic and hormonal abnormalities. We will not have any definite answers for 6-8 weeks on that, so for now she has been diagnosed with FAS.
Now. Obviously this was very, very hard for me to hear. I mean, I was prepared for this but oh-how-I-hoped it wasn't true. For so many reasons. For one, FAS can affect so many areas in a child's life...relationships, behavior, mental and physical development. FAS is kind of an 'invisible' disability. Where it is just expected that kids with obvious disabilities, like Down Syndrome will have delays, kids with FAS are expected to function normally in their society. All of these thoughts have gone through my mind as we are thinking about her future.
Mostly the reason why I didn't want to accept the FAS diagnosis is because having that 'label' on her is a constant reminder that every single one of her issues, her struggles, is a direct result of being born to a mother who abused her own fetus with drugs and alcohol. FAS would explain the prematurity, the cleft palate, her smallness, as well as the anorexia. The geneticist explained that many times these children are literally born premature just to save themselves from the alcohol. How sad is that.....Makes me tear up just to think about it......Zoya being born 13 weeks early weighing less than two pounds.....to save her own life.
Anyway, it is what it is and it doesn't change a thing about how we feel about her or how much we love her. I just hate having the word "alcohol" having any association with any of my children, so now when we refer to Zoya as having FAS, let it be known that from now on, in our house, it means "Family Adores-her Syndrome". :)
Here is Nurse Emily, the amazing cleft palate coordinator nurse of Arkansas Children's Hospital. She was singlehandedly responsible for getting us short-notice appointments with a pediatric surgeon, a speech therapist, an audiologist, a dentist, an ENT, the cleft palate surgeon, a speech therapist, a nutritionist, and a geneticist and an HIV specialist. (I guess I might as well go ahead and say it since it is probably obvious at this point.) Emily was so great to work with and Zoya loved her. Zoya loved Emily's surgery hat so much, that Emily brought one for her the very next day. How sweet.
Here is my girl, waking up from surgery, sporting a new Mickey button. Her daddy calls it her tummy port. She really is the best little patient. Doctors are always amazed at how cooperative she is. By the way, while she was under anesthesia she got several cavities filled and her ears all cleaned out. 99% of patients with cleft palates need ear tubes but she has apparently outgrown her need for them, because a thorough examination by the ENT revealed her ears are clear and no surgery was needed. PTL.
I had to take this picture of Zoya talking to Simeon on the phone post-surgery. She was too sore to talk but she nodded her head and did sign language. She is telling him "I love you." :)
We are in full swing with feeds now. She is getting 4 cans of Pediasure per day, through her tube, plus whatever else she is able to take by mouth. It makes my happy maternal hormones flow to see the milk going through the tube and making her little abdomen protrude a little, just as it should have been all along. It is music to my ears to hear her say 'more milk'.
By the way, the best news of all is this: The cleft palate surgeon, Dr. Buckmiller, has scheduled a cleft repair for THIS COMING APRIL. She totally disagreed with the previous surgeon who said there wasn't enough tissue for the repair. Dr. Buckmiller said after a few months of solid nourishment under her belt she will be ready for surgery. The speech therapist was also encouraged about the potential she will have after it is repaired. I don't think we will have to go to Dallas after all.
For a point of reference, here is a photo of little Zoya the first day we saw her across the courtyard at the orphanage. She was waiting her turn to take a bath in the kiddie pool. This is the little girl that we fell in love with. We vowed to get her healthy and to help her reach her fullest potential, We have sure tried our darnedest but now finally feel that we are on the right track. Pray with us that she will be plump and healthy soon!