Friday, December 17, 2010

We are home and doing well

Whew! We got back from Little Rock late Wednesday night and I've been exhausted. So much to do, especially this time of year. I am apologizing in advance that nobody will be receiving any Christmas cards from the Urbans this year. It was a fleeting, momentary thought, but it just ain't gonna happen. Not this year.

 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!



40 comments:

Amy said...

So glad that it went so well and Zoya is getting what she needs! Can't wait to hear about her packing on the pounds :)

Jo's Corner said...

This whole post makes me cry. I;m SO glad that you saw that little, tiny, emaciated girl and stepped up to Save Her Life! She is absolutely beautiful. Every child is unique. The diagnosis does not mean that Zoya will have behavior problems. I just KNOW that the healing power of our God will take care of those issues. I believe the Loving Care she receives from her family will be one of her saving graces! I Pray that I am around for a long time, so I can watch on Awe as she grows into a wonderful, productive woman! I'm glad she's getting nourishment and that you can rest assured, Charrissa! You'll ALL be in my Prayers!

Mary said...

Charissa,
I'm so glad to see Zoya's button! Can't wait to see her chunky! My kids say not to give Jacob the Periactin, since when he runs away from them naked, his butt jiggles! Hope you see that soon!

Mary

Wendy :) said...

I can't tell you how excited I am for Zoya & for you!!!!! You are going to see her thrive in so many areas just because of the good nutrition:) What an Amazing job you guys are doing....

Beth said...

I rarely get emotional reading posts, but Zoya has totally taken over my heart. It doesn't hurt that her Mama has a way with words.

I can't wait to see all the growth (developmentally, emotionally, physically) that emerges in the next few months.

Hallelujah!

Anonymous said...

Oh wow....what a wonderful piece of news. Bless her little heart. She's such a joy and to see everything that you've mentioned come to pass...I sure can see God's hand in this, can't you?
Rest well, Urban family. This thrills me not only for Zoya's sake, but we can see how God orchestrates everything you need for your beautiful children to come to pass in some way.
Have a beautiful Christmas.
Love, Aunt Sharon

~*Brittany*~ said...

So happy for you all, I am sure you must feel so relieved right now, just heading in a direction. I will be praying for Zoya to plump up quick. It breaks my heart for her that all of these things could have been avoided, Thank God that she found her family that day waiting by the pool =) I believe God has great things in store for her, what a testimony she will have. God bless!!!

Anonymous said...

I know it's a case by case scenario, but I want to tell you about my cousins. They both have FAS (2 different birth mothers) G is 15. He struggles a bit academically (should be about a 9th grade level, is at about 6th grade level now) but he is more mature than his 17 year old sister (who doesn't have FAS)

S (G's brother) who also has FAS is 12. He is the most creative kid I have ever met. He academically he is on track with every subject except math. They figure he's about a grade 3/4 level, but showing continuous improvement.

Try not to worry about the people who "label" her. Those people don't matter to her right now. Only her family and friends matter to her. The ones that matter will only label Zoya as their loved one.

Take care,
Alison

Anonymous said...

PS - What does Zoya think of the feeding tube? Is she handling it okay?

Sylvia MiaSara Truewell said...

Oh, such wonderful news! That should plump her up in no time, assuming there isn't another underlying issue that's preventing her from gaining weight. (But I guess you'll know more once those tests come back, right?)

She looks so beautiful in that photo where she's signing into the phone. She is such a pretty little girl!

Now, I noticed that her face is a bit asymmetrical, particularly around her left nostril, which looks quite flat -- I imagine it's due to her cleft. Do they need to fix this to help her breathe better?? Or is it a purely aesthetic sort of thing that she can make a decision about when she's older?

I have another question: Did you know about Zoya beforehand? Or did you fall in love with her while after you spotted her at the orphanage? I can't say I blame you -- I'd have been tempted to scoop her up as well, especially with her sweet disposition!

thedickinsonfamily said...

So glad all is headed in the right direction. Praying for you & Zoya every pound of the way. Your such a good mommy to her. So proud of you for not giving up. She deserves the best. Looking forward to seeing her growth as she prepares for her upcoming surgery. PTL!

Natalie said...

So glad to hear such good news.

The FAS does feel like a kick in the gut, but if that is what it turns out to be, then at least it will help you to understand what she may be going through if she has difficulties, and to get her the help she needs. I do like your alternative definition though.

Molly said...

There is something special about her. I can feel it. From the day you announced you were adding here, I could feel it. This little girl is a special girl. Despite her challenges she's got a bright future ahead of her.

The Jewish mother in me is THRILLED to see that skinny little thing with a gtube. Now you can fatten her up and she doens't have to do a thing. It must be such a relief to have it in.

Cammie Heflin said...

Crying here! I am so pleased for Zoya and the plan of her care! I know she is going to be thriving so very soon!!!! I bet the next time I see her I won't recognize her! When's that going to be anyway???

Michelle Z said...

We love your tiny girl, and I'm so happy there's been some progress for her! Please keep us all updated how she's doing, she's such a doll. I'll never forget when we first met her, and she gave me a dandelion :) Such a little love!

csmith said...

I am SO thrilled to hear all about Zoya's treatment. I just know that Zoya will show dramatic improvement with her growth in all areas in the coming year and I am so excited that we get to share her with your family. Just remember that Zoya is exactly who she is no matter what label is added to her chart.

Charissa said...

Thanks everyone for your nice comments. Yes eventually she will be able to have plastic surgery of the nose, if that's what she wants. Sylvia to answer your question we had heard about Zoya from a family who adopted her friend, but we didn't have enough information about her to specifically request her. That is partially why our adoption trip took almost 3 weeks longer than we anticipated...there was extra paperwork and extra SDA appointment that took time. But she was totally worth the wait. And Alison, she loves LOVES her tube. She is so happy that she doesn't have to eat anymore! :( Jo, I'm praying for you.

Deb D. said...

An army of skilled, caring specialists lovingly, tenderly, respectfully looking after one who, by all human perspective, was born "one of the least of these". And yet she is now claimed, named, adored, treasured. She belongs, has hope, has peace, has comfort. Oh, the things God does. How He redeems. How His father heart is seen by the way He cares for His ones who are so vulnerable. Thank you, Lord, for Zoya, for John, and for Charissa, and that from the foundations of the earth it has been your good plan that their heart and lives be joined as family. Thank you for showing Yourself in them. And thank you, Charissa and John, for sharing all of this with us. Sweet Zoya. Your name means "life". You were well-named.

Julie said...

I love your new take on FAS... i too hate that term/diagnosis. It makes me so sad to know that it is a truly preventable thing... :( Our poor precious babies. However, that label doesn't stop me from loving her. I'm so thankful you chose to love Zoya as well. I will continue to keep you in my prayers. I can't wait to see how she is going to blossom now!

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Anonymous said...

Such a sweetie. How wonderful to have gotten all those specialist visits in at one time. Cant' wait to see how her little body responds to the feeds. You can see in her face how she is responding to the love. She is at HOME. It shows.

Jan

loridave said...

I'm so glad to hear that Zoya is on her way to health...music to my ears! May God bless you always for making her your family.

I completely understand your broken heart in hearing the words of FASD being associated with your child. I'm in that same place now with our son, and it is terribly, terribly hard.

With prayers,
Lori

Stephanie @ Ralphcrew said...

I've seen a lot and so I don't cry much anymore, but this totally made me cry! God bless you and your beautiful daughter! I love the way you look at FAS as Family Adores-her Syndrome.

Shea said...

So glad you are home and doing well!!! I remember our talks about fas and just having no way to know for sure because of the cleft lip. Entering into our own adoption, I said there was no way I could or would handle fas. It was our 1 no go. Now that O is home, I think there is a big possibility that there might be fae. I have not had any evals done, and know it would be useless, but he does get followed for his adhd. His behaviors just point to it, but like you there is no way to know. You know what, I just don't care. Maybe things happen for a reason, maybe we did not know before because God knew we would back out. One thing I do know my friend, is that God brought us to our children, and he makes no mistakes. Zoya may have challenges and O may have the energy of ten teenage boys, but they are our babies. For everything their bio mother did not do, we fight 10 times harder. We were born to be their mommas and no diagnosis is going to even make a bump in the road. Zoya is going to do great things in this world because of your love and devotion and O is going to rock America until he runs out of breath. It is what it is. We have what we have, and you know just like I do, you wouldn't want it any other way. O and Zoya have something very much in common, they have the ability to love. When they do, they take our breaths away. I've always said that love could do amazing things and work miracles. Now it's time for us to sit back and watch.

Anonymous said...

What an awesome post. Zoya is beautiful. I'm glad that she'll be able to eat and gain weight now.

The picture of her on the phone to Simeon is so, so cute. What a sweet girl!

-M.

Stefanie and Bill said...

God Bless her and YOU!!!! Praying she gets pleasantly plump in no time! Merry Christmas!
Stefanie

Anonymous said...

I'm so glad for Zoya, wishing you the best in her recovery and next surgery.

She is an amazing girl with lots of potential. I can feel because of your posts how good she is, so inocent and good looking, despite all she has been in her life. I love her!!!.

Did you get the Zevex enteral Infinity pump for her?. It is used with a super mini backpack. This pump is perfect for infants and small kids and it gives them freedom during feeding times because they carry it along and it is propably the lightest pump in the market.

Beatriz

Leslie said...

I am SO happy for you all and for precious Zoya. I can't wait to see the changes that are sure to follow. We drove through Little Rock today and I prayed for you guys - I didn't know you would be home so soon. That is awesome.

Justine said...

So happy Zoya is getting the care she needs! Praying for wisdom for you, but love the new meaning for FAS. Zoya is a special little girl! And don't worry about the Christmas cards! Merry Christmas, sweet friend! Just enjoy your family and try not to stress out.

myminivanrocks said...

I'm so glad to hear that your visit went well. How amazing that you were able to see so many specialists so quickly. That's usually half the battle! I'm so glad she's got the feeding tube and I can't wait to see her pack on the lbs!

I first read your post a few days ago, but it made me cry and I couldn't give it the response that it deserved. My son, Colin, has FAS. He actually doesn't have all of the facial features, so technically he has ARND (alcohol related neurodevelopmental disorder), but our doctor said we were better off with a full FAS diagnosis. He said ARND is "half" a diagnosis, so Colin would only be eligible for half of the services.

FAS is hard. Colin's problems right now are mostly social and emotional. He has some aggression issues, and we are starting to see him miss some cognitive milestones. He has so many great qualities though. He's outgoing, funny, charming, and adorable.

I know it's hard not to think about worst-case scenarios, but there are success stories, too. Zoya seems like a fighter, so stay positive!

Alana said...

We all know that there is nothing DOWN about Down syndrome and I love that FAS has a new meaning in the Urban home! It sounds as though your trip was amazing and that you all are going to be able to move mountains in the year 2011 to help Miss Zoya to be strong and healthy. I know this is one of many prayers answered and I am so thrilled for you guys. Thank you for allowing us to be on this journey with you.
Merry Christmas.

Christine said...

Yay yay yay! I am so happy to read all this! You sound much happier too. I love your outlook on FAS--- it really isn't that horrible. We adore our Sveta too!

heatherbrown said...

Praying for her, she is a beautoful little angel-she has got to be on the right track now!

Anonymous said...

I'm more of an occasional lurker, but just had to post. I've been following your blog since you adopted Ava, so I feel like I know you! We adopted two Ukie cuties 8 years ago. Our daughter has an FAE diagnosis. When we look at her we see a Fantastic, Adorable, Excellent person. She's 15 and we wouldn't trade her for anything. We too suspected it when we met her, but fell in love with her sweet, loving personality. Adopting a child with FAS/E was my biggest fear. Because of God's plan my biggest fear has become my greatest joy!
Cath

JennyH said...

I was going to FB you but since I'm here anyways....

I have 2 coupons each for $2 off any PediaSure that don't exp until the end of February. I thought of you when I saw them so I saved them out of my recycle pile. Are you interested in them?

Anonymous said...

Hi Charissa! Just wanted to say I'm so happy for Zoya! She is so adorable, as are all of your darling kiddos! I was worried when I came to your blog...it said it had gone private a couple of days ago! Glad you are back! Blessings to everyone in the Urban family!

Hugs,
Michelle Baxter (Cincinnati, Ohio:The family who sent the American Girl for Liesel :) )

~ Teresa ~ said...

I have been thinking about you and Zoya alot since you posted this. The last picture has haunted me. The skin and bones picture. No child deserves not to be taken care of... I cried... I cried again today. I will pray for your family and for Zoya.

Ayla said...

Gosh little Zoya is such a doll baby, I'm so glad she's doing better! Your entire family is so beautiful!

Julie said...

Family Adores-her Syndrome! Gotta LOVE it! And anyone that reads your blogs can plainly see that ALL of your children are adored! What a blessing you are to so many of us.

Wendy said...

I've been following your blog for several years and was so sad to see that it was private for a couple days and I had no way to get a hold of you to see if I could have the password. Do you plan on making it private?