All ABout The Girls

Wow!  We have been home for 3 weeks, but it seems like a much, much longer time.  These 3 weeks have been very, very busy.  It is so strange how having your own children (as opposed to my daily occurrence of taking care of other people's children and sending them home) can change so many things about you.  I haven't lost my absentmindedness but have noticed remarkable improvement (keeping track of Juliana's medicine, oxygen level, and appointments is always at the forefront of my mind).

Here is a look in to what has been going on and what is about to be going on with each girl:)

ELENA

Elena is doing fantastic in language development.  She had tubes put in her ears last Wednesday and is already hearing so much more as evidenced by her new sounds and turning her head when a new sound appears.  She is loving music and will even do a little boogie when she hears it; she also tries to sing along (so cute).  She is also progressing in learning how to walk.  She is using a little push toy to walk from one end of the living room to the other.  I am very proud:)  
Elena LOVES to eat and will have surgery to repair her cleft palate June 22 (at least that is the plan for now).  She has been compensating well eating many things like animal crackers.  This surgery will be difficult for us just because we have to be the "meanies" keeping her fingers out of her mouth.  We have been working on training her not to suck on her fingers anyway, because it is so germy.
Elena is an absolute JOY.  She is so fun and loving.  She LOVES kisses and leans in for them and gives them back (very sloppily:P).  She is waving and saying BYE-BYE.  She is making choices, like when she is eating by pointing to the food she wants.  She is signing more and eat.  She is saying MAMA deliberately now.  She likes going for walks and playing outside. AND my favorite ... she LOVES bath time.  I see some swimming in the near future.
Though she will have many experiences without me this month, which makes me very very sad but it is for a very good reason...

Juliana

Juliana has also come a LONG way in 3 short weeks.  And even further this past week.  We knew when we committed to Juliana that she had a 'heart condition'.  We assumed this would mean surgery.  After meeting with the orphanage director, we most certainly knew this meant surgery (as she told us the cardiologist there said she need surgery SOON, but because she was being adopted soon they wanted her to have it in America).  So, while we over there, I had a dear friend (April Grubbs;who happened to be 8.5 months pregnant at the time) setting up appointments for me here, because I wanted them seen ASAP.  We flew home on Friday, May 6.  Our first doctor's appointment was Monday, May 9 with the regular Pediatrician here in town.  He was great.  He has 4 adopted children, including one with a disability.  He was able to get us in the next day to see the local cardiologist.  Tuesday, we went to the cardiologist and he was CONCERNED.  He didn't have an echo tech there so we would have to wait until the following Tuesday.  After the echo, the Dr. explained to me that the pressure in her lungs appeared to be very high from the echo.  They would need to do a heart cath to get exact measurements to DETERMINE if she would be able to have surgery.  This was not what I expected AT ALL.  I thought we would come home, get her seen and have surgery QUICKLY and everything would be fine.  Now I have this Doctor telling me that she may have damage beyond repair and that surgery could actually make it worse and so would mean a shorter life span.  I was devastated.  I was beginning to feel very sorry for myself and even compared (in my head) to the Kennedy's.  I found myself pleading with God (during one of my student's IEP meetings) that this not be true.  God, I lost my baby in miscarriage, I lost 'Marlena' before I even got to hold her, I lost 'John Mark', how can I possibly lose another child.  I envisioned the funeral I was going to soon have to plan (but couldn't find myself doing it, I couldn't plan a funeral for my baby) and just thought how in the world can I give her back so quickly.

Fast Forward:
Last weekend we went to the Nashville area to visit my family.  Juliana woke up at about 5 AM, fussing.  This is very, very unusual (as in never happened before).  I picked her up and she felt very, very hot.  I got up tried to feed her and calm her down.  She did calm down and did eat a little, but was feeling feverish.  I searched for a thermometer, but couldn't find one at my Granny's house.  I called the pediatrician's office and after answering a series of questions from the nurse, she told me to take her in to the hospital.  Vanderbilt is about 25 min. away so we took her there.  She did have a small fever, but there biggest concern was her oxygen level.  It at one point while we were in the ER dropped to the 60s and even to the 40s at one point.  Because they knew she had a heart condition with what appeared to be some sort of infection, they began running tests.  The cardiologist came down and checked her out and they decided to admit her to the hospital.  The next day in the hospital would bring more tests run and the Vanderbilt doctors consulting with her Chattanooga doctors about there findings.  At Vanderbilt, they found one more diagnosis with the echo that we did not know about.  We knew from the Chattanooga doctors that she had an ASD and VSD (hole in the upper chambers and a hole in the bottom chambers).  But at Vandy, they began looking for something else that was causing such high pressure in her lungs and they found it... Patent Ductus Arteriosus (PDA).  Everyone has this in the womb it allows blood to bypass the baby's lungs by connecting the pulmonary arteries (which supply blood to the lungs) with the aorta (which supplies blood to the body). Soon after the infant is born and the lungs fill with air, this blood vessel is no longer needed. It will usually close within a couple of days.   Well, hers didn't and was quite large.  This was causing her to have too much blood going to her lungs causing the high pressure.  They Doctor's decided to do the heart cath there at Vandy (she was supposed to have it done last Thursday in Chattanooga).  It just made more sense since IF she was able to have surgery, it would be done at Vandy and they would need all this information anyway.  So this means we got cathed a day earlier (last Wednesday).  It was a nerve wracking wait.  The Doctor had explained to me in detail all the risks in doing this procedure, especially with someone with such high pressures.  The nurse called every so often to tell me how it was going, which is a huge help. Although, I would be lying if I didn't say every time the phone rang for me, I thought, this is it something went wrong and this is where they are going to tell me.  They last update I got, the nurse kind of stalled because she was basically apologizing for the procedure taking 'so long' (I actually thought it was pretty quick; but maybe that is because I was watching the 'Jerry Springer' show happen in the waiting room with another family).   It was like I could finally breath when she said Juliana was doing great and that they were finishing up and that the next call would be to go to the consultation room where the doctor would inform me what happened.  The Doctor that performed the cardiac cath and the medical student that is following Juliana met me in the room and I was just holding my breath.  I am seriously surprised I didn't pass out from lack of oxygen just from holding my breath while his computer booted up so he could show me the video of the procedure and give me his recommendation (surgery or no surgery).  And when he told me he DID recommend her for surgery, I could then take a breath.  That is when I started crying, I was so happy.  He explained that it would be a BIG surgery and that he recommended doing it during this hospitalization.  There is still time to do the surgery but that window is closing.  The next day during rounds (I love that all the doctor's and nurses include you in this), I was informed that her surgery was scheduled for the next Thursday unless they could get her in on Tuesday.  Dr. Mettler will be the surgeon.  There was no reason clinically to keep us until this coming Thursday so they sent us home on oxygen (to keep her pressure in her lungs down).  We will have surgery early Thursday morning.  She could be in ICU for about a week and another 3 weeks in a room.
She is so much more active on oxygen.  She makes more babbling sounds, smiles more, laughs more, eats faster and doesn't sweat,  plays more, uses muscles more.  I am very encouraged by this.  I know we are not out of the woods yet, but I am so relieved that surgery is a go.  I will most certainly miss Elena and Ezra on a daily basis, but in the long term this is a very short time. 

So that is what has been going on in our world, which hopefully explains the lack of updates:/

We have been so INCREDIBLY BLESSED by a wonderful support system (our parents, our small group and extended church family, close friends, co-workers, even not so close friends).  I mean I sometimes will just stop and really think about HOW MUCH we have been blessed by the kindness and generosity of others.  People have given us money to help pay for the adoption, "stuff" to care for them, time by completing tasks for us that we just can't get to(like yard work), meals, and most of all love, encouragement, and prayers.  We most certainly do not deserve ANY of it, but are most GRATEFUL and HUMBLED at this outpouring of love.

I will have my laptop this time when we are at the hospital so I will update as I can.  It is sometimes just too emotionally draining to post, but I will try to keep updates coming.

Thank you for your prayers and encouragement

Kelly

Update

We knew this week would be a busy week as we have doctor's appointments scheduled every day (including tubes for Elena's ears on Wed. and Heart cath for Juliana on Thursday).  However, there has been a slight derailment in our plans though I think it may have been a blessing in disguise.  Early Saturday morning, Juliana woke up crying (very unusual; she is the most chilled baby I know).  So, I picked her up and she felt very hot.  I called the on call nurse that told me to get her to the hospital as it sounded like she was in respiratory distress.  Well, we were visiting my family in the Nashville area, so we took her to Vanderbilt.  Juliana's oxygen dipped a little low so they put her on oxygen and ran all sorts of tests including getting images of her heart.  Because of her heart issues and oxygen levels, they admitted her.  So now our family is in 2 directions.  Ezra is holding the fort down and taking care of Elena's 2 appointments this week (plastic surgeon and tubes) and Juliana and I are kicking it at Vandy.  The staff have been WONDERFUL!  Actually, not quite like I have ever experienced any where helpful.  We do not know when we will come home yet but are hoping to have the heart cath here and proceed from there. I will update when I know more and can sneak out of her room again.  Please remember us in your prayers.

Kelly

Cupcake!!!! Om nom nom nom!!!

Some women at church threw a shower for the girls today.  Both girls were super cute.  Elena is a little eating machine!  She had her first cupcake today.  Since she has missed two birthdays already, we just had to get some pictures of her messily eating it.  Elena needed no coaching on eating a cupcake.

OMMM NOM NOM NOM!

No more cupcake....  a very sad occasion.

 

 

One of the boys at the shower is named Jack.  He has Down syndrome and autism.  He kissed Elena and Juliana.  It was very sweet and touching - a real life "Precious Moment"

Here are some other pictures.

And then they were four

(written Thursday, posted Saturday because of website glitches).

Today is the two-week anniversary of the day we got our girls.  They have been with us for fourteen days. One week ago we were staying up until wee hours of the morning packing for our long plane flight home.

There is a part of me that refuses to believe that so little time has past.  Can it really only have been two weeks?  Already the old life seems so far away.  The orphanage that was our daughter's home and family already seems like something out of a long-forgotten dream.  It is growing harder and harder to remember our life before we had these two beautiful girls.


"How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back?"

We are back in our same house.  We are back in our same work.  Many parts of our life are the same after a month-long hiatus.  But everything is different now.  We are parents.  We have little children that must be cared for and fed and changed and washed.  We have little children that curl up against us and go to sleep.  We have little children with us that we can not return to *their* parents at the end of the day.  There is only forward, there is no going back.  When I kiss Juliana and she breaks into a huge grin and tries to return the kiss - it breaks our hearts to think about our sweet babies in the orphanage.  How could people not want such wonderful children?  And yet - we would not have predicted this path a year ago or two years ago. "Few can foresee whither their road will lead them, till they come to its end."

Saturday we had many visitors.  It is a perfect time to have visitors - we weren't expected to feed people, we weren't expected to have a clean house (suitcases all over the living room), we looked half-dead from jet lag and nobody cared because they were mainly there to see the babies.


Sunday they went to church.  Elena fit in well with the other children at the nursery.  She found an animal cracker on the floor and ate it quickly.  We had assumed she couldn't eat such things due to her cleft palate.  She found another one unattended and ate it also.   They had many admirers.


Monday the girls went school with us, where they met many members of their adoring public.  Elena is a diver, she has no fear of heights and is always eager for someone new to cuddle her - so she practically dives out of one's arms to a new host.  The girls also went to a pedatrician.  He said that their iron levels were very good.  Both girls had already gained a pound each in our care. 


Tuesday the girls went to the hospital for tests.  There was much poking and prodding and taking blood for additional tests.  The poor girls were exhausted!  Elena came home and went straight to bed, skipped dinner, and slept right on until morning.


Today we took the girls with us to go grocery shopping.  We needed to go shopping because our house lost power during the tornados that hit our area three weeks ago.    While we had a lot of food "made ahead", we know it all thawed in the freezer and then refroze once power was restored.  Tonight we threw all the frozen food away and began anew (we would like to skip food poisoning).  Elena helped us shop by destroying the list and throwing items out of the diaper bag (and out of the shopping cart).  She did get a sample of chinese noodles from the sample lady and she liked these very much.  Juliana helped us shop by sleeping the entire trip.

Home Safe

We arrived back at our home after 28 hours of travel.

The girls were good on the flights.  Elena acted up a little, but we still received many compliments from people on how well-behaved she was and how she was the best baby and didn't cry and so forth.


The comment we heard most about Juliana - "wait, you have TWO babies?" She slept practically the entire day.

Lufthansa airlines wins "Best Airline" award for us.  The in-flight food was delicious, they provided us with two bassinets for the babies (which helped immensely), hot washcloths, and stuffed airplane plushies for the girls.  Lufthansa employees also boarded us first in Munich.  In Kiev, at the start of our trip, everyone else shoved ahead of us and Lufthansa employees forced a break in the line for us (which was great, because it was freezing and raining and we were carrying babies).

The airport in DC was horrible.  We only had 90 minutes to get to the main terminal, go through passport control, get our luggage, go through customs, go through security, get to the new terminal, and board the flight.  If we had not broken in line in front of 500 people (yes, we got permission from UA) at the security screening, we would never have made it to the plane in time.  The designers of the DC airport apparently received kickbacks from the people who make escalators.  Ride an escalator up, walk a bit, ride another one down, walk a bit, up, walk, up, walk, ride down.  This is very difficult to do when dragging a cart with luggage.  We were either running like a squirrel as fast as we could (carrying the girls) or standing in a huge line. When we finally made it to our gate, the plane was boarding.... and overbooked.  The ticket agent had our information pulled up, but was not paying attention to us.  He asked over the PA system if there were three volunteers to give up their seats.  He was boarding people from two flights and said nothing helpful to us.  Kelly was in tears at this point.  Finally everyone else boarded and he called the passenger's names who were not present. There were our openings - the three people did not show up.   We ran and ran down a covered sidewalk and boarded the plane a couple minutes before takeoff.

Kelly's family and my family met us at the airport to welcome us home.  It is so good to be here again.

We all went to Ruby Tuesday's for dinner.  It was good to have a real salad and a real hamburger again.  It was good to read a menu in English again.  It was good to have free refills on drinks again.  It was good to have ice in our drinks. AND it was VERY GOOD that we were able to eat without cigarette smoke polluting the place.

After dinner was a three hour drive back to Chattanooga.  We rode, family drove.  Neither of us was in any shape to drive.

It is like waking up from a long dream or visiting a forgotten place from childhood. I wandered through the house - I found that my motor memory of where the light switches were located had faded.  I had to hunt for the switches.  It was like a dream, though - I remember this place.  The pantry is full of food that is labeled in English.  We can drink water out of the tap and it won't kill us.  The water is clear and not yellow.

The dog seemed very excited to see us again.  It was so wonderful to sleep in our own bed again.  It has been a long journey.  Thank you all for your support.

More updates will follow.

The final piece

We have the final piece of paperwork for the girls.  They have their visas and we are clear to go.  Tomorrow morning we board a plane heading home.  It has been a long and exhausting journey.  We can't wait to be back home again.

What can you do for her?

Yesterday (Wednedsday) we had our first Embassy appointment and also took the girls for their medical appointments.  The nurses who weighed and measured the girls were astonished at how small they were.

The doctor was interesting.  She was shocked to learn that we had no other children, and that we were adopting two children with Down Syndrome.  Her face had this expression "Why on earth would you want to do that?"

She examined Elena and pointed out things like the short fingers and toes and mentioned that this was because of Down Syndrome.  She also said that she was underweight and this could be because of internal organ malfunction (not necessarily true, most children with DS are low weight for the first couple years).

Next she examined Juliana and she was suddenly much more grave.  "She has a very bad prognosis" she said.  "What can you (irritatedly indicating Ezra) do?  What can you do for her?  She has very bad heart problem.  Maybe she will live for a few weeks or a few months.   What can you do?"

We explained that we had appointments with the best hospital in America for these types of problems.  She wasn't interested.   "Maybe if she was two months old the surgery would help.  Now she is too old.  Very bad prognosis.  Even if she made it through surgery - what kind of life would she have?  She has Down Syndrome."   She handed Juliana back to Ezra and crossed herself.


It was quietly infuriating.  The heart surgeries in America for children with Down Syndrome are routine.  Yes, it is a serious surgery - that point can not be glossed over.  Yes, there is a possibility that she won't make it through surgery - but I do not think her prognosis is as bleak as the doctor predicted.

What can we do?  At the bare minimum we can still love her and give her a family.  Just because she has Down Syndrome does not mean that she can't be picked up.  Having Down Syndrome does not mean she isn't capable of being hugged or kissed.  Down Syndrome should not mean a life of isolation in a crib until death.  Statistically speaking, most people who are born end up dead - why should a child with Down Syndrome be treated differently?  Even if her life is short (and we hope and pray that the surgery in America will be successful and her life will be full of years) - that should not be taken as permission to warehouse her and deny her the same love and affection that any other child receives.

As far as her second accusation - "What sort of life would she have?  She has Down Syndrome."  That is selling her far short.  No one can make those sort of calls about an infant.  I know many people with disabilities.  I know people with Down Syndrome (and some with much more severe disabilities) who have jobs and live independently.  I know people who are perfectly capable (no mental or physical disabilities) who are content to live on welfare and contribute nothing of value to society.  I know people who are wealthy and unhappy.  I know people who are poor and are happy. Who can tell what an infant will become?  It is not the cards you are dealt, it is how you play the game.    

There is a saying "the best revenge is a life well-lived".  I have seen far too many people with disabilities that were written off by the doctors and the medical community.  "They'll never walk, they'll never talk, they'll never feed themselves, they'll never amount to anything, just let them die."  Yet these same children later are doing all of those things and more.  We sincerely hope that Juliana will get such a revenge.


Both girls have improved dramatically over the last week (yes, a whole week).  Both girls love being hugged and kissed.  Both girls now anticipate kisses and try to give the kisses back.  Elena is walking with assistance very well.  Elena is still babbling but she is making many many more distinct sounds than she was a week ago.  Juliana makes great eye contact and tracks people in the room and turns her head when Kelly or I talk.  Juliana is eating considerably more than she was a week ago.  Both girls are getting cuter by the day (who knew such a thing would be possible?).

...

p.s. the doctor at the end of our meeting, also said that she wasn't sure if Juliana had Down Syndrome or not (stubby toes, stubby fingers, almond eyes, heart condition..... how much more proof does she need?)  We include this because it gives us more hope - it shakes her credibility a bit.

Finally an Update

We are so ready to be home!!!   Hopefully, we will be home on Friday. (If you want to know where and when so you can welcome these girls home, shoot me an email and I will email you the details)(kellyreynolds at live dot com).  It has been a very LONG journey but there are 2 little beauties sitting here with me now that have made all the bumps and frustrations worth it. 

Sorry we have not blogged more or had more pictures, but these two are a handful!  They currently have different sleeping, eating, and medication schedules that we are trying to synchronize, plus we are living out of suitcases, plus we are in a country where we don't speak the language.  It makes shopping for *anything* very difficult because there is a lot of guesswork involved.  Is this wheat or oats?  Does this have dairy in it?  Corn?  Rice?  The commodities that are similar (butter, sour cream, bacon, etc.) are all packaged differently than we recognize and are in unfamiliar stores, so we can't just dash in a grab the things we need.  Walking several blocks to/from the store slows up as well.

Juliana has already made some great progress.  She is far more social and expressive than she was two weeks ago or even three days ago.  She has firmly decided that this whole "family" thing is a good idea because she gets held so much more - to the point where she now cries if she is set down for a minute. (Sorry Miss Victoria) Elena has gotten much, much better at pulling herself up and "cruising".  She will be walking very soon.  She is in to EVERYTHING.  She excels at unpacking our luggage.  We were able to give Elena a bath tonight without her completely freaking out (between crawling and spreading food over herself, she gets grungy), but there will be a long road before she takes baths willingly.

Just a note:  I started this post at 8 PM it is now 10 min. to 10 PM :)