Monday, May 30, 2011

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

3 comments:

  1. Prayers, prayers, and more prayers, Kelly & Ezra. I can't even imagine all that you guys are going through--this rollercoaster of joy and worry. BUT I know God Himself is in the midst of all and He holds your hands as He holds both Elena and Juliana close to Him also. Although there is no certainty in the outcome of Juliana's surgery right now, you can be certain that you don't walk through it alone. He is in every moment and will give you the strength and even the peace to persevere through surgery and recovery and all the joys that lay beyond all this. Love you guys. Give Elena and Juliana kisses from Aunt Sheri!
    <><
    sheri

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  2. Prayers for you all! It all sounded so scary! Wonderful news on her being able to have surgery!

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  3. You know you have our prayers! Love to all of you!

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