Monday, March 12, 2012

Almost Home

We are almost home, but not quite yet.  Micah is at Mary Bridge Children's Hospital currently, being treated for malnutrition and dehydration, and being treated like the precious little lamb that he is.

  I love this hospital!  They are being so sweet to my son.  My son who has never been deemed to be worth anything by any of his caretakers before is now being doted on and tickled and told how cute and wonderful he is by everybody who visits his bedside.  And I think he is thinking about liking it!  His shy half-smiles when people approach him are too sweet!

The good news is that Micah's shunt is working properly and he does not require immediate brain surgery.  Considering that he had no follow-up care after his shunt was put into place, this is excellent news!  

The not-so-good news is that he has been suffering from long-term malnutrition and he is still not sure whether he is going to choose to eat or not.  He is now willingly taking bottles of apple juice, which is fabulous!  

However, he is refusing every flavor and variety of baby formula and nutrition that the hospital wants him to consume, except for the juice, so he is getting nutrition through an NG tube currently.  That is a soft, flexible tube that is inserted through his nose and down into his tummy.  He hates the feel of the tube going into his nose, so he has to have both of his arms wrapped in "no-no's," which make it impossible for him to rip the tube out, but also very difficult for him to flutter his fingers in front of his eyes, which is one of his primary self-soothing behaviors, so this has been pretty upsetting for him.  
Micah manages to still flutter his fingers
He is being monitored for refeeding syndrome, which is a potentially life-threatening reaction to good nutrition after a long period of malnutriton.  He had some levels of specific chemicals in his blood tests yesterday that were not looking right, but they were not terribly alarming yet either.  By today we are praying that those levels even out, rather than plummet in the wrong direction, which would indicate refeeding syndrome.  Please pray that his body tolerates the nutrition well, and pray that he chooses to eat today!  The doctor is really wanting to put a G-tube in (that is a feeding tube that goes directly into his stomach, and he would have a port on his tummy that I would run his food through.)  We are praying that Micah will choose to eat so that we can avoid this drastic surgical step for him, if at all possible.  We want to give him a chance to eat by mouth before we move to a G-tube.  

Meanwhile, the rest of us are staying right across the street from the hospital, in a very nice apartment that is available for families who have a loved one as a patient.  We live a couple of hours away from the hospital, so this is much better than driving back and forth.  Derek was able to be with us for the weekend, but now he has to get back to work, so I will be here with the rest of the kids.  We spend quite a bit of time in Micah's hospital room, and the rest of the time we come back to the apartment facility.  Besides our lovely room with two queen beds and a bathroom (think very nice hotel room) there is a living room area here, a community kitchen, a fabulous playroom, laundry facilities . . . we are really blessed to be able to stay here!  
Isaac has video games here . . . something he doesn't get to do
at home has made this a fun place to stay!

our sweet girls in the playroom

eating pizza in the dining room (Gideon prefers his pizza in
a bowl, in bite size bits, like soup)

Gideon probably thinks he has been adopted by a band of nomads at this point.  Since I have taken custody of him, we have been on the move.  Trains, planes, and automobiles, apartments, hospital rooms, one brief stop at home . . . the sweet boy must think his new mommy and daddy are half-crazy!  He is very happy most of the time, and dealing with all of the confusion pretty well.  However, it is obviously very confusing and upsetting for him, to have everything in his life change, and to not be settling down into a routine yet, and he shows us he is overwhelmed by completely melting down into enormous, ear-piercing screaming fits.  We hug him and rock him until the screaming stops and then when he is calm enough he is able to suck his thumb and get his cool back.  
I love watching him watch his new siblings.  He was delighted to meet them, and now his eyes follow their every move.  He takes in every word and every interaction between them (I keep reminding them that they are teachers now, so they need to be careful what they are teaching him!)  I believe that it is going to be enormously beneficial for Gideon and Micah to be surrounded by siblings who are modeling speech, appropriate play and interactions, and affection.  

I think our other kids were surprised at just how delayed the new brothers are.  We had tried to prepare them, but they were still expecting boys who could run and play with them.  Gideon does not have enough impulse control to be able to play freely, and he is too unsteady to run without falling down.  The day will come when the kids can all run and play together, but right now Gideon needs Mama right by his side when he is not being held.  

Gracie met Micah and asked, "Mom, did you bring home a new baby?"  Even though Micah is almost six years old, Gracie has now taken to calling him "the baby," and she thinks he is wonderful!  She has been wanting a new baby, and now she finally has one to love on!  Micah does not seem to mind at all!  Gracie plays in his hospital crib and offers him toys, and he gives her his half-smile and seems quite pleased to have her by his side.  

We are not sure yet how long we will need to stay up here, but we are praying that we can go home soon!  My house is a disaster, we are eating fast food for almost every meal, my kids are missing a whole bunch of activities and classes back at home . . . but at least we are together!  

For all of you who were praying for our flights to go well, I have to tell you that God answered those prayers!  Micah, who panics at being picked up and screams in terror at being in a moving vehicle, was completely quiet for both flights.  The first flight he stayed in his seat the whole time, laying down sideways with his head against the wall and his feet on my lap, then every once in a while he would flip around and try it the other way.  Not happy, but dealing with it.  The fact that he had a window seat actually helped, because once we closed the window shade, he felt safe and cocooned in his little nook.  Gideon, on the other hand, completely panicked and went into a several-minutes-long screaming fit when we got on the plane.  The stewardess was very kind to him (bless her heart!  Gideon was being so awful!)  and we got through it.  Then Gideon slept through most of that first flight.  

So by the time the plane took off, both of my boys were calm.  And it was me who was crying!  It just suddenly hit me, you know?  I was sitting on an airplane with my arms wrapped around these two precious treasures, and getting them OUT of that place forever!  Out of a country where people look at them with disdain or disgust because they don't look or walk just like everybody else.  Out of a country where they were sentenced to a lifetime in a mental institution because their bodies are not perfect.  Out of a country that neglected them and let them down and damaged them so horribly.  As the plane lifted off the ground the tears were flowing in gratitude to our mighty God.  I didn't anticipate such an emotional reaction, but there it was.  God has a good plan for these children.  Their lives have just changed forever, in wonderful and huge ways.  They have a future and a hope.  They were never forgotten by God.  They are so precious to Him!  

Both of the boys cried and panicked when it was time to get off the plane.  I just have to say, I LOVE Lufthansa!  The staff were all so very kind and helpful!  When we got off the plane, there was a crowd of employees waiting for us, with our stroller unfolded and ready for the boys.  They carried our bags for us and pushed the stroller, and escorted us through the entire Frankfurt airport to our next gate, taking us through employee-only elevators to get us there faster.  Both of the boys cried loudly this whole time, and everybody tried to reassure them, and they were really nice about it.  They got us settled into our waiting area and assured us they would be back to help us board the next plane, and they did!  So while we waited, Micah laid down across a couple of seats and was able to calm down from the terrifying stroller ride through the airport.  Gideon had a ball watching airplanes take off and land, drinking over-priced airport juice, and best of all, running!  This was the first time I have ever been able to just let my little boy run, and he was so giddy with excitement!  And I discovered that with smooth floor and wide open spaces, he can go quite a ways without falling down!  Much more than I had ever seen him walk before.  He's not so good at navigating, so he was constantly cutting in front of people, and veering to the left and then the right.  He was giggling and smiling and wide-eyed with curiosity at everything around him.  It was pretty overwhelming, also, though, so after awhile of that, he spent the rest of the layover on Mama's lap, wrapped in his blanket and sucking his thumb.  

Then came our long flight.  At first, the airline had the boys in bulkhead seating (as we requested) and my mom and I seated together 11 rows behind them.  I was tempted to take them up on this.  "Okay, here's their diaper bag.  I'll be back in 11 hours to pick them up.  Have fun!"  But the airline had other ideas, because they shuffled people around and we got all four bulkhead seats in a row.  Micah had plenty of room to lay down on the floor in front of us, in a little nest of blankets and pillows, and he was stoic and quiet the entire flight.  Refused to even drink a drop of water, though.  

Gideon had a screaming fit just about once an hour, on the hour.  It was very overwhelming for him (and for all of our fellow travelers, I am sure.)  He loved all of the food and drinks and snacks that Lufthansa served (who doesn't?  Lufthansa is awesome!)  But other than that he was very bored and just threw the toys and crayons and things I offered him after about the first three hours.  He spent most of the flight on my lap.  Anyway, we survived it!  We survived customs.  We survived baggage claim.  We survived getting the wrong bag and having to go all the way back to customs and waiting a very long time to get the correct bag.  Poor boys!  

Then Derek and the kids were there, waving and jumping up and down to greet us, and I was so happy to see those sweet, smiling faces!  The kids all got to know each other while the adults talked in hushed tones about who would be going to the ER with us and who would head home.  It was finally decided that sweet, exhausted, travel-weary Grandma would go home with Grandpa (who also came to the airport to greet us) and all of our kids would go to the ER with us, because they wanted to be with us and they had been missing mommy for too long.  Turned out this was a good choice.  While Micah was being assessed we all had a nice small room to hang out in together for the kids to get to know each other.  We didn't get them home until 5 am though!  

So that is a brief update on our last few very busy days.  I will try to post an update soon!  The kids are waking up now, so I am out of free time for the day!  :)  So happy to have all my kids around me, at last!

And in keeping with the backward timeline of this blog, I will leave you with a few pictures from our days in our apartment in Kiev:
Gideon tends to eat hunkered over his food and guarding his
bowl . . . and don't turn your back on your plate or he will
help himself!

Gideon wants to hear this book over and over again

waiting for the boys' medical appointments to clear them
to leave the country

two weary travelers

watching a movie (Gideon strapped into the stroller is the only
way for Mama to get embassy paperwork filled out!)

Micah watched the movie, too!


Nan and Dan said...

So happy you made it home safely and getting medical care. Praying you get home soon!!

{ MELBOURNE ROAD } said...

so happy, relieved, tired and excited with you. God is AMAZING. he sure picked the perfect family for your boys to be welcomed into and A VERY STRONG MOMMA!

Anonymous said...

So happy to hear you are back on US soil and made it through the flight okay. I hope you are able to get home soon and start your knew life with your angels.


Holly said...

If you need anything at all, even a coffee break to get away for a bit, let me know! I literally live a 5 minute drive from Mary Bridges!!! I am so happy he's getting care!! He needs it!!!

Nealy said...

Fabulous post! My goodness, what a saga! Surely your energy is straight from God above. I love your spirit, your attitude, your love, your heart, the way you talk about your kids...

Thank you for all you are doing for these two precious ones! God bless you and your entire family!!

Christine said...

Welcome home! I love reading about your boys! Thank you for sharing their amazing storioes with us! Blessings!