Two Very Special Birthdays!

Number one special birthday was last Saturday...MINE!!! With all the commotion this week, I haven't had a chance to post about it. My husband went to the local QUILT SHOP!!! And picked out a quilt instruction book and had them help him purchase all the fabrics for me to make a quilt! And then he drove into Albuquerque to buy me some of my favorite See's chocolates to go with it, and a really sweet birthday card that has a recording of his voice then some music. That was so extra special for him to do all of that for me! But THEN he came home and baked me a birthday cake from SCRATCH! My absolute favorite recipe with chocolate cake and peanut butter frosting, YUM!!! So I had an awesome birthday!

I did need a little help to blow out all 51 candles!

And today is my beautiful mother's 90th birthday!!! (Can you believe it?!?!)

Happy Birthday, Mom!!! We love you very much!!!

Mattea has a new button!

Meredith (http://www.cornishadoptionjourney.com/) has designed an extra-special button for our blog!!! (THANKS, MEREDITH!!!!) We would love for any and all of you to follow us through this journey, and we are especially grateful for all of your prayers!!! If you click on "Grab This Button" it will take you to the html code to place the button on your blog.

Grab This Button

Step One Done

Here's our little one "before"...she went in about 7:45 this morning, was finished around 11:00, and stayed in the PACU (recovery room) until 4:30, so it was a long day for the three of us who were up before dawn.

Here's Mattea "after"--- she didn't stay asleep for long. They said she did great with the anesthesia. The cardiology nurse said they had every reason to expect she would have to spend the night in the PICU, but not so. She did super!
The cardiologist did not share any hints with me on the results other than he had to sit and "crunch the numbers." Because of her pulmonary hypertension and the damage already done to her lungs and heart, the readings they get during the procedure don't show "normal" changes BUT he did say there were SOME changes, so I am taking that as a GOOD sign. The cardiology nurse talked at length with me afterwards about all of this, explained possible options and outcomes, and told me about some of the pediatric heart surgeons they were considering if she is able to have surgery. We will know much more at her follow-up appointment in 2 weeks from tomorrow. If you look at your calendar you will see that it is lucky Friday the 13th! For now, we are thankul for a smooth day. And thank-you everyone who offered up prayers on our behalf! I am hopeful.

they are home

They are home just a few minutes ago Mattea did well and so did mom and bubbs as they had a long day at the hospital. I went and had lunch with them so they could take a break from being at the hospital.
We won't know the results for two weeks as to whether we can repair her heart or not. Then the real fun begins no matter what the outcome.
Lou will most likely be on in a few to let you know more on her day

A matter of her heart

We need to be at the hospital at 6:30 a.m. tomorrow. Mattea will be having her heart catheterization to determine her chances of surviving an open heart surgery. We are hoping for positive news but trying to prepare as best as we can for whatever the outcome. We are praying hard for the wisdom to make decisions we will need to make. I just know that I started this journey with the intent to give a little girl a chance at life. Please keep her in your prayers.

I know it's cliche, but I couldn't resist!

She got it all over her hands too, the chocolate pudding. It was like she had never been allowed to have messy hands before, she just kept looking and looking at them, and she was so HAPPY!

New pictures...

Onnolee and her Daddy

I really like this one.

Yay, no tape on her face!

Mattea's hair is finally long enough to pull up into a bow.

I like my new brother!

On the move---Now that she's feeling better, it's hard to get Mattea to sit still for pics!

Mashed potato hair mousse...

Estuardo's turn. He's still into dressing himself in pajamas all day...sometimes right side out.

Kory showing off his muscles.

Bubs again...cheese, Mama!

Anyone have a caption for this one??

Quick update, progress

Problems and concerns seem to be working themselves out.
Mattea's little cheeks are doing much better. During the day she leaves the O2 cannula alone for the most part, and we only occasionally have to replace it into her nose. It does seem to stay on better looped around her head rather than her ears. At night we tried using extra thin Duoderm, and it worked great, except we only had one to try so while we wait for more, we are just using paper tape and it's also working well. We are no longer keeping the SAT monitor on, as Dr. Greene only wants an occasional "spot check."
Which means we have had some sleep!
We don't have a completely definitive answer on the Celiac disease. To me it looked like one lab was positive and one was negative. Our pediatrician seems to lean towards her not having it, but since we have taken out wheat and gluten from her diet, the blow-out diapers have finally stopped and her horrific skin rash has gone away. Could be a coincidence, but...
And I popped her on the scale last night and she now weighs 27 pounds naked weight. So that's a 3 pound gain! She has also lost some of the desperateness when she is eating. To me, that's the best sign of all.

We're doin' good!

Estuardo and I spent the whole afternoon at the social security office, but it's DONE. Otherwise, we are all doing well and adjusting. Estuardo and Onnolee were curious about Mattea at first, and then jealous, but Estuardo now stops himself realizing he can't be too rough with her.

Here he was saying,"Mama, I want to say 'Cheese!'"

"Me too, me too!"

Here's Mattea in her new high chair learning how to finger feed. I have to fish the cheerios out of the seat several times but she is beginning to be able to get them in her mouth all by herself!

Their mission here was finished...

Let's not let their journey be in vain. Katerina and Margarita have gone back to their Heavenly Father after a flu epidemic hit their institution. They died without knowing the love of a family. So many other children like them languish in orphanages and mental institutions in Eastern Europe. Children who need and deserve the love of a family. Today we cry for Katerina and Margarita, Let's get the word out so that others will not die alone.

Miss Katerina

Miss Margarita

Meredith at http://www.cornishadoptionjourney.blogspot.com/ said it so well that I think this has been the most posted tribute among the Reece's Rainbow "family" (http://www.reecesrainbow.org/) ...

While we were... in memory

While we were eating... ... they were hungry
While we were playing... ... they were restrained
While we were tucking our kids into bed... ... they were alone
While we turned up the heat... ... they laid in the icy cold
While we wrapped our children in blanket sleepers... ... they laid in their own excrement
While we sang songs and listened to music... ... they listened to the screams and cries of those around them
While we rocked our babies... ... they silently rocked themselves
While we hugged our kids... ... they scratched at their own faces and pulled their own hair for stimulation
While we cried over scraped knees... ... they moaned in their loneliness
While we brushed our daughters' beautiful hair... ... they had their heads shaven to stave off the lice
While we fought off the flu with love and nourishment... ... they got the flu and went Home.
No longer suffering... but so many more still are.
In memory of those that have never felt the love of a family, but have passed away alone.
Today we learned of the passing of these two girls in Eastern Europe.

Mom is overwhelmed
She forgot about dad who is stressed to the limit. I hate the method we have to use right now to attach her O2 system. Waking up every few hours to make sure Mattea has her O2 on yet. Then trying to get her to eat for dad another interesting event or series of events.
As Lou said some things we kind of knew about, the heart issue, the tonsils, the hearing issue and now we have more knowledge and less answers so it is like being on a roller coaster that just keeps going faster and the turns get sharper and steeper and there is no brakes in sight. You have got to love the care these kids get in the orphanage and the medical knowledge about them you get as the new parent it is like a easter egg hunt you have to find all the hidden medical issues and hope that they are all do able.
Best way I know of to keep the heart beating and the person on the edge of there seat is to adopt one of these kids and go for the ride. It will last a lifetime and who knows where it will end.
Now she has gotten so she will eat for me and take a bath while giving dad a shower because she just loves to splash in the water. She is so much fun watching her explore the house with her O2 line dragging along the floor and the cats chasing it and she and the cats checking each other out. Sometimes they just sit and look at each other and once in a while Mattea will reach out towards them and they run out of her reach. She loves to get into the diapers and see how many she can spread around the room, loves to beat with the spoons on anything available, standup at the windows and watch the dogs outside and most of all seeing just how far she can go before she runs out of O2 tubing.
Lou and I have our moments since Mattea has come home but the most upsetting is taking off the little stickers that hold the O2 tubing on her face and seeing the skin come off as well. We have a new way to do it and hopefully we can use that today when Lou gets up from her nap and hopefully it works as it is just sickening to see her little face all ripped up from the stickers we started out with.
She has just pulled the O2 off again so have to go and put it all back on for the umtenth time that is getting old quick.
dad

Just a little overwhelming...

Okay, so we knew about her heart--- maybe hoping things would be better than they are, but we were prepared for that one. Kind of.
(The surgery...if we get the chance...will be both terrifying and so full of hope...)
Still to come, the ophthalmology consult, the ENT consult, audiology, the genetics consult, the rehab consult, and now the new addition is the GI consult. Her lab work is looking quite positive for Celiac disease...sigh...
Hopefully, her tonsils out safely, to help her breathing.
Hopefully, some ear tubes will help her severe conductive hearing loss.
Almost all of her titers came back negative for immunity so it looks like she might need to be re-vaccinated.
And her tender grips are tearing the skin on her cheeks...does anyone have a good way to keep the O2 on her face and still keep her skin?
I am feeling just a little overwhelmed today.

Do you see the numbers?!

A little hard to see, but the number on the left is Mattea's O2 level and the number on the right is her heart rate. The left one started at 78 and the right one started at 115. Yesterday we finally got the tender grips to keep her O2 on her face, and they work! (Plus we got the SAT monitor) This is after one full night on O2. I like it!

3 hours in...

I think we have improvement here...

AV Canal

Mattea saw the pediatric cardiologist this morning. The tech who did her vital signs left the SAT monitor on for 15 minutes and just stood there staring at it waiting for it to change. It read 76-78%. When I told her those were the correct numbers, she said,"The doctor isnt going to like this, I am waiting for it to go up..." It didn't.
Then they did the echocardiogram. I tried to get them to explain what was on the screen, but I guess they are not allowed.
Dr. Greene came in then to speak with us and the news was that Mattea has complete AV canal, plus she is missing a muscle in her left ventricle and the left side of her heart is too small. She ordered her to be on 1 liter of O2 as much as possible, changed her meds, and ordered a cardiac cath for 3 weeks from now so the O2 can hopefully improve things before then.
Now we wait to see if she will be able to have heart surgery to repair the AV canal or whether the pulmonary hypertension has already caused too much damage to her lungs. And she is wearing socks on her hands...

Mattea's Pediatrician Appointment

Weight, 11.55 kg, not on the Ds growth scale...yet...Height was okay even though she looks so tiny to us. Enlarged tonsils, which we already knew. Heart murmur, oxygen sats only 78-82%, yikes. (Thank goodness, we are headed to the cardiologist tomorr0w) But the pediatrician thinks, all things considered, she looks great. Flu shot, Hep A shot, varicella shot, about 12 different labs, referrals to ophthalmology, ear-nose-throat, genetics, rehab. Done, home, very tired. Back for more tomorrow.

I'll miss the clapping...

It's very, very good to be home and watching Mattea enjoy her freedom! The kids are getting along great!
To explain the title of this post, even though I was so, so homesick during the time I spent in Ukraine, it really did grow on me in ways I wasn't expecting. I think I blogged on this previously--- My Mom expressed concern that I was going so far away and worried about my safety. When I got home, I reassured her that the Ukrainians had taken good care of us while we were there. When I was alone with Mattea, I never once had to navigate the many stairways with her stroller by myself. There was always someone running up to help me carry it, even down multiple floors of stairs. The food was comfort food to the max. The sound of the language is musical and I didn't realize how familiar it had become until I was at the luggage area in Salt Lake and I helped an older woman pull her heavy suitcase off the carousel. She turned to me and said "Spasiba" (Russian for Thank-You) and then got embarassed because she hadn't spoken English. I immediately said "Pazhaloosta" (Russian for Your Welcome), it just automatically came out, and she got all excited and asked if I spoke Russian, which I really don't. Meanwhile, I was all choked up at hearing the familiar words and knowing it was probably the last time in a long time that I would hear them again.
So to the title of the post, every time we flew with Ukrainians on the plane, whenever the plane would land, every single Ukrainian on the plane would clap an applause, a gratitude that they had landed safely. When our plane landed in Albuquerque, there was silence.
Here are some pics of our first few days at home---
Two little mischief-makers emptying out the box of diapers and flinging them everywhere. It's fun to watch Mattea get into mischief.

Rub-a-dub-dub...

Mattea found the feather duster.

We were unsure of whether or not to put her in a crib but opted to give a toddler bed a try since she does seem to have awareness of the edges, and she has done fine!

"Little" brother Estuardo interacting---usually gently...