Tuesday, November 29, 2011

Giving Thanks

We had a great Thanksgiving.   Both girls have enjoyed the wealth of plentiful food that they now enjoy.

Elena has learned that some food taste better than others.  At school, she had to make a collage from photos of different types of food.  She picked cakes, cookies, bread, mashed potatoes, and macaroni and cheese.  She put back all of the pictures of  vegetables.  Several weeks ago, Elena went from eating *Everything* to suddenly eating very little - just picking at food.  We were very worried when after three days she had eaten practically nothing and still had no appetite.  We were eating at a Chinese buffet (which she normally loves) and got at last a plate of dessert (for us).  Elena perked up immediately and ate all the pudding and jello and other desserts.  We were amazed - she had refused all food for DAYS because we weren't offering her any dessert.  She has since become "picky" about what she eats, but we can get her to eat vegetables and food that she doesn't like anyway.


Juliana has switched to solid foods completely and she can gum anything less stringent than steak into mush.  Juliana especially likes collard greens and spinach.  She doesn't like foods that are too spicy, but other than that has eaten pretty much everything we put in front of her.  She out-eats Elena most days.

If the girls were to write a letter back, it would read "WE LOVE AMERICA.  FOOD IS GREAT!"

A couple days before Thanksgiving, we celebrated (yes, celebrated) Juliana's first fat roll (on her leg).  Yes, we know that many people do not celebrate fat rolls, as it means eating less and working out more.  However - we have been desperately trying to get her weight up in the months since we got her (she now weighs about 17 lbs / 7.7kg) .  When we got her, she was 11 pounds (5 kg).  This was off-the-charts in a bad way for an 8-month old.  There was not any meat on her scrawny legs.  Part of it was her heart condition - part of it was the orphanage just doesn't feed the kids as much as the kids would like.  The girls' orphanage was one of the *better* orphanages over there - there were pictures of the president congratulating the orphanage director and the director seemed to genuinely care about the children.  Bad as some of the things were (both girls were significantly underweight), from comparing notes from others who have adopted from this area we have heard many more tales of orphanages that were worse but we have not seen evidence of better.


We became aware of this family's adoption a couple weeks ago:
theblessingofverity.com

The little girl they adopted from Eastern Europe is nine years old.  Her weight when they adopted her was also 11 pounds (5 kg).  There is no typo in that sentence.  Let those numbers sink in.  This little girl at nine years weighed the same as an newborn - due to malnutrition.  That she has even survived this long is miraculous.  They are home and she is in the hospital gaining weight.

Here is the scary thing - this is not the first skeletal child we have heard of being adopted from this area - there have been other people adopting from Eastern Europe with similar children.

Here is the real scary thing - there are more like her still imprisoned unto death unless they are ransomed - whose only crime is being born different.

Give thanks for what we have been given.  Be mindful of those who go without.

Tuesday, November 15, 2011

Lemon Lemon

When we had been back in the states for a few weeks, we tried Elena on a lemon slice. She popped it in her mouth, then immediately spit it back out. We gave her a slice of lemon a week later (to test her memory). She picked it up, looked us square in the eye, and then very deliberately threw it on the floor. She has since learned to like lemons in small doses; she will run her finger over a lemon slice and then suck on her finger or she will lick a lemon slice but she won't actually eat it.

A couple of nights ago we gave Juliana her first taste of lemon. The first taste of lemon is primarily designed for the amusement of the parents. Juliana liked the taste of the lemon and ate practically a whole slice of lemon, but she was wincing and shivering the entire time. She kept going back for more! She doesn't have any teeth yet but does an amazing job of eating table food with her little gums. Juliana made the jump from rice cereal / milk to table food VERY quickly. She is bound and determined to eat grownup food.

So anyways..... here is the video of Juliana's first lemon.


video


video

Friday, November 4, 2011

Photos

The girls grandmother took them to get photos made a week ago.  They took very nice, and very very cute pictures.

It is hard to believe that we've had them six months now.



Wednesday, November 2, 2011

Halloween

Here are the girls dressed up for Halloween.
Keeping Elena's costume on was like trying to play "dress up" with a cat.

So sorry it has been a month+ since updates.

Sunday, September 18, 2011

Elena SHARED

I was feeding Elena dinner tonight (leftovers from lunch).  At some point I handed her a french fry.  She bit the fry in half, then very deliberately took the other half and set it on the floor and pushed it towards the dog.  The dog ate it.

This is HUGE for her.  We have never seen her share anything before.  She knows that if she is finished with her plate the dog gets her leftovers, but she normally keeps the dog at arm's length away while she is eating because she doesn't want him to eat her food.  In this case though, she continued to ward off the dog and ate quite a bit more (she wasn't through eating).  It was also a french fry - a food she likes. 

For her to share food is completely unexpected.

Also tonight she gave Juliana some nice pats and even hugged her several times of her own volition.

This was also completely unexpected.

It was nice to see her sweet side coming out and her be nice to her sister for a change.

Sunday, September 11, 2011

Juliana's Birthday

We first met Juliana on April 1st, 2011.


It was very much like holding a doll.  She didn't really interact much.  Her back moved as a single stiff piece (we learned later that this is typical of "crib babies").  She had no head control.  We could cuddle her and snuggle her but it was clear that she was not used to being held for long periods of time.  While there were other children in her wing, she was alone in her room with three other empty cribs.  Later we discovered that her onesie (singular) was much too short for her, thus drawing her legs up like a frog to the point that she was unable to extend her legs all the way even when wearing nothing.  The staff fed her very quickly and most of the bottle ended up on her towel. 

When we were getting the medical reports so that we could leave the country, a sour-faced doctor proclaimed that Juliana would probably die in a few weeks.  "Even if she lives - what kind of life will she have?  She has Down Syndrome!"
---------------

Against the backdrop of all that negativity, we are thrilled to celebrate our daughter's first birthday.  Juliana is an extremely content little girl.  Her heart  surgeries are past, she sits up by herself, she scoots to the things she wants, she babbles nonstop, she loves to be held, she loves to pull (and try to eat) her mommy's hair.  We see both girls becoming more and alive with each passing day.

 We had roughly 30 people show up for her party and celebrate with us.  It is truly something deserving of celebration and thanksgiving!


We can't have a blog update just with Juliana pics....  Elena like cell phones very much.

Juliana took some prompting to know what to do with the cake.

The whole point of a first birthday is to let the baby smear herself in brightly colored icing.

Juliana liked playing in the icing like it was a craft project.

Elena needed no coaching on what to do her cupcake.


NOW she understands what to do

Juliana got a cake... everybody else got cupcakes.

Such a sweet face!

Juliana received many nice presents.  There were toys and clothes and above all..... lots of crinkly paper!!!

Sunday, August 28, 2011

Bath Fun

Elena is helping shampoo her hair

Bath time!
The girls like to eat, hence the girls get at least one bath a day. 

Elena is very close to walking - she takes little steps and is loving it.  Elena is getting more social by the day and loves to be with her parents.  She is starting to cry when we leave her at school or the church nursery, which is a good thing.  She snuggles and cuddles more now and is actually sitting still long enough to read books.  She likes sitting with us at the table and can feed herself very well with a big-girl spoon.

Juliana is scooting all over the place but not actually crawling yet.  Juliana can now raise herself into a sitting position and can sit for about 30 minutes without support. 

Thursday, August 25, 2011

Wedding

My cousin Jeremy had a wedding.  It was outdoors and a bit hot, but it was a short wedding.  Kelly got to go *dancing*, which was was the highlight of the evening for her.


Elena with her aunt Helen

"I will smite you!!!"      Aaaah!!! Who gave the baby a sword?!?!?    Really - it is just the wedding program / fan on edge to the camera.....  

aunt Helen, Juliana, and aunt Meg

Ezra and Elena dancing

Helen and Elena dancing.  Elena likes to spin around fast.

Kelly and Juliana

Wednesday, August 17, 2011

Juliana at school

Since I have good photography skills, Juliana's teacher had me take pictures of all the children in Juliana's room today so that she could use them for "who came to school today" and other activities.  Here is Juliana's picture. 



Sunday, August 14, 2011

Back to school....

I am sorry it has been almost a month since the last update.  Life has been hectic, but fun.

The girls started going to school last week.  Kelly and I work at the same place and we can take the girls with us - if we want to check in on them they are just down the hall.  Both girls seem to like it and aren't showing separation anxiety.

I saw one of the girl's passport photo the other day.  I was taken aback - when you are with them every day it is easy to lose track of how far they have come in a short while.


We have played several times in Ezra's parent's neighborhood pool.  Elena has learned that she can't swim yet and can't breathe underwater.  She is loves being in the pool but clings very tightly to her parents (which is a good thing).

We are starting to feed Juliana more cereals and are starting her on vegetables.  Yes, we did get some carrots in her mouth.

The ever-so-rare-both-girls-in-the-same-picture-having-fun shot.
Elena is almost fully recovered from her cleft-palate surgery.  She isn't allowed to eat hard foods yet, but is otherwise on a normal diet.  She has figured out how to use the TV remote control.  She also loves to grab objects, hold them to her ear, and babble non-stop (i.e. using a cell phone).

Juliana is so close to crawling she can taste it.  She can get to objects she wants by rolling over.  She can also bow up like a banana and paddle vigorously with her arms to drag herself where she wants to go.  She hasn't figured out arms and legs at the same time.

One of Elena's teachers at school likes to put her hair in pigtails.  We think she looks super cute!

Sunday, July 17, 2011

Beware the cute!

So we started the day bemoaning our lack of pictures of the girls.  We remedied this by dressing the girls in cute outfits and taking their pictures quickly before they could get the clothes messy.  Blah Blah blah here are the pictures.




This is probably the best picture we have taken of Juliana


We wanted a shot of the girls propped up together showing their sisterly love.  Something like "Precious Moments" that would be so sweet that just viewing the picture would give people cavities.   Alas, such was not to be.  When we put Juliana in Elena's lap, Elena pitched a fit and tried to kick her off the sofa.  So we put the girls side by side.  Elena had this exasperated "why oh why are you making me sit next to her?" air to her, as is visible in the picture.  Juliana loves to watch Elena and tracks her movements and is very interested in her big sister.  Elena loves to try and thump Juliana on the head (we are working on "nice touches") and is very jealous of any time, toys, or feedings given to Juliana.




Wednesday, July 13, 2011

13.4 lbs and NO MORE OXYGEN!!!

Juliana saw her cardiologist today and took her off oxygen.  She is still on 2 medications and we will let her body grow out of them.  She is also up to 13.4 lbs.  She was 11.5 when we first got her.  This girl has been eating us out of house and home but she is growing and oh so active.  Today at the doctor's office she was all over that table trying to flip and flop to eat the paper.  She jabbers all day and blows bubbles.  She has made so much progress and I just love watching her every move. :)

Thursday, July 7, 2011

Of Pools and Spoons

Elena having fun in her grandparents' pool.  A giant bathtub!  What fun!

She didn't want to stay in the boat - she wanted to be IN the water.

She loves it!

Starting Juliana on baby food - she says "Gimme dat food!!!"

Such pretty eyes!

Such a cute smile!  Messy, but cute.


June has been a blur.  We have spent the entire month at hospitals or doctors visits.  All the major surgeries (that we know about) are over and both girls are recovering nicely.

Elena still has arm restraints on often to prevent her from putting her fingers in her mouth (oral surgery) and is on a liquid diet.  It is very pitiful - she knows we are eating better food than her Pediasure milkshakes.  She will start making "om-nom-nom-nom" chewing faces when she sees and smells food, and will point at our food and sign "more" and "eat" but to no avail.  It will be great when we can move her back to mushy food and then back to solid foods.  Elena is a foodie in training and so having her choices be reduced to 1) Vanilla  2) Strawberry has been hard on her.  She knows she is not supposed to put her fingers in her mouth.  If we catch her with her fingers in her mouth, we fuss at her and put her arm restraints (her "no-nos") back on.  If she catches herself putting her fingers in her mouth, she signs "no" and "stop" to herself and will try to put her "no-nos" back on.

Juliana is recovering nicely from open heart surgery.  She has a big lump at the incision site, but the surgeon said this was normal considering how little nutrition before.  The surgeon was thrilled with how well she is progressing.  Juliana "talks" and babbles a lot more.  She eats a lot better and is getting stronger by the day.  She is still on a little bit of oxygen for her pulmonary hypertension.  Keeping the oxygen in her nose is a constant battle, as she delights in yanking the cannula out of her nose.    Even when it is taped down to her face, she still pulls it loose. She is close to crawling - she can flip over and roll to objects she wants.  She is getting better at sitting in a formed chair.  Her other hobby is yanking Kelly's hair.  She will wrap Kelly's hair in her soft little baby hand and then clamp down like an industrial vise.

Thursday, June 23, 2011

Being a Mom

is hard work, but it is the best work in the WORLD!  But I do believe it takes a village to raise a child.  God has richly blessed me with a large village.  So many family, friends, church family, and co-workers have helped us in so many different ways; prayer, giving to adoption costs, throwing showers, cleaning house, yard work, meals, babysitting, encouraging words, prayer, organizing, copying, faxing, mailing, and the list goes on and on.  I still haven't gotten all the thank you cards written   (sorry about that, I am working on them as I can :)  But thank you for EVERYTHING you have and are doing for us. We are deeply humbled and grateful.

------

Elena has had a good evening.  She has been more smiley and happy.  She has been drinking more from her special bottle and is now off  of her IV medication.  If she continues drinking at the pace we may get out of here sooner rather than later.  :)

Ezra and Juliana came up for a visit this evening.  Juliana was so happy and cooing so much.  I'm pretty sure she is also just a little bit heavier than she was 2 days ago:)  She is doing so well.  The cardiologist said this week after examination and an EKG, chest X-Ray, and echocardiogram, that "that is a good looking surgery'.  He was pleased with the results thus far.  She still has elevated pressure in her lungs but still a big improvement from what it was.  He said it just takes time.  He is leaving her on oxygen and her medication for now, but thinks it won't be long.

 

Wednesday, June 22, 2011

Elena's Surgery

Elena had surgery this morning to repair her cleft palate.  Everything went well.  We will be in the hospital for approximately 5 days (until she is off of IV pain medication and is drinking okay).  She so far has had 2 apple juices and part of a grape juice.  She has to drink from a special bottle with a tube instead of a nipple.  I put the tube in her mouth and gently squeeze.  She has her elbows splinted (has knocked them off 5 times so far today) and an IV in her foot.  She is sleeping in her car seat or snuggled in my arms.  She has generally been pretty calm.  We have only had a few episodes of being upset for an extended period of time.  Most of this is when she tries to leap out of my arms to lay on her belly to rest and I can't let her lay down. 

Thank you for all your prayers for our family.  I have felt so need these past few months with funding the adoption and now just support in handling sick babies and hospital stays.  I look forward to moving beyond these surgeries to a more "normal" routine.

Sunday, June 19, 2011

Busy Week Ahead

I am really going to try to update more often.  We have been busy and no sign of a slowdown in sight.  Juliana seems to be recovering well.  She is still on oxygen at home, but hopefully we will be off of it soon.  Please continue to pray for her as she continues to recover.

This week is going to be busy.  I am having a cavity filled Monday. Juliana sees her cardiologist on Tuesday.  Hopefully Elena will see ENT for followup from tubes on Tuesday also.  And the BIG day is Wednesday.  Elena will have surgery on her cleft palate.  This will be difficult for all of us.  Obviously on her as she spends approx. 5 days in the hospital, sleeping in her car seat (to remain upright), elbows splinted for 3 weeks (to keep her hands and other random things out of her mouth), and a liquid diet for I'm not sure how long. 
It will be difficult for me to entrust the care of Juliana to others while I stay with Elena.  Juliana is still recovering from her surgery and still fragile.  I am praying Elena's stay is shorter so that I can be with both of them.
Hopefully after this summer of surgeries, we will be all well and ready to start created a new normal routine.

Monday, June 13, 2011

Home Again

I went up on Friday to visit Kelly and Juliana.  The latest I had heard was that there was a chance that they would go home next Thursday. When I arrived, Kelly told me that the doctors had said that they might go home this weekend!  This was most excellent news!

The news turned out to be accurate.  We spent most of the day Sunday waiting to be discharged. We had all the luggage packed up and ready to go and waited... and waited... and waited.  We were very much hoping that the doctors wouldn't come back and say "oops, we changed our minds".  We did get to leave in the late afternoon.  The drive from Nashville to Chattanooga was very smooth. 

Juliana is still on oxygen, but only a very little amount.  She eats so much faster now.  She babbles more and is a lot more active.  Her incision is healing very nicely.  We had been told to expect three weeks in the hospital - one week in ICU and then two in a room.  We are thrilled that she has healed so fast and is leaving the hospital after only nine days.  We would like to say "thank you" to all the people who have been praying for her recovery.

It is good to be home.  It was good to sleep in our own bed again - Kelly was very sore from sleeping on the bed in the hospital room. It is great to have our little Juliana free from all of her tubes and lines and monitors.  It is so good to be able to hold her (albeit very carefully) and have her go to sleep in my arms.

Wednesday, June 8, 2011

Moving on up

to the 6th floor!   We have moved. No fever so far today!  Nothing on culture so far today!  Eating better!  Things are looking up!

Pneuma NOOOO!

Juliana got her breathing tube taken out today, she is now on oxygen through the nose.  She also got her PA line taken out (basically a big IV in her right wrist).  We are hoping tomorrow they will take out her central line and chest tube.  Those are some BIG goals.  Last night she had a fever so they drew some cultures but won't have the result until tomorrow.  She spiked again while I was eating dinner back at the Ronald McDonald House.  They went ahead and gave her some antibiotics until they get those cultures back.  She is pretty congested.  We are just hoping and praying she doesn't have pneumonia.  I don't think she does but know it is a possibility.  She was more awake today but no smiles :(  She went most of the day without pain meds.  But she was getting pretty fussy this evening and they gave her some.  Nothing we did would make her happy.  I can't wait to hold her again.  And I can't wait until she is smiling again.  I think it is harder now seeing her even without all the extra tubes and wires she has had.  She is now awake and frustrated because she can't cough up the stuff in her lungs so we basically have to make her gag so she will cough.  The doctor seems encouraged by how she is looking.  She will probably at least for the time being, go home on Sildenafil (Viagra) and maybe some Lasix.  But that is still too far in the future to know.  Thank you all for your support!

Kelly

Monday, June 6, 2011

Operation - Day 3

Juliana started the day off with amazingly awesome heart and lung pressures.  Everyone was very impressed.  As the day wore on, though, her lung pressures went back up to where they do not need to be (about half of her systemic pressure).

They removed the chemical paralysis today.  After several hours, she was moving a little.  She is on morphine for pain and several other drugs for sedation.  She opened her eyes three different times and looked out a little.  We had about three seconds of "eyes open" time throughout the day.  Not much, but it is good to see her beautiful blue eyes again.

Otherwise there were no changes in her condition.

Saturday, June 4, 2011

Operation - Day 2

Juliana has stayed in about the same condition today.  She is still chemically paralyzed and still sedated.  They have removed a couple tubes, added a couple of medicines, and changed some medicines out for different ones.  She is on morphine now for pain management.  She did not react to having her nose suctioned or her gums brushed (yesterday - even though she had no signs of consciousness, her heart rate and blood pressure would spike when getting suctioned or brushed - she hates these things).

It is hard to see our little one covered in so many tubes and not be able to hold her or squeeze her.  It is hard to call her name and she not answer, to touch her face or hair and feel no response.  Only the steady rhythm of her chest from the ventilator and the steady pulsing of all the numbers on the screen show her to be alive. 

We lose track of time in this place.  What day is it?  Time passes slowly.  In many ways it feels like "Groundhog Day" again.

Friday, June 3, 2011

Operation - Day 1

Our surgery was originally scheduled for yesterday.  However, it was pushed to today because a more critical child came in and the surgeon spent most of the day in the operating room.  In that case, we didn't want Juliana being operated on by a surgeon who has been hard at work all day and no longer fresh.

The hardest part about today was the very beginning. We had heard all the terrible ways the surgery could go wrong.  Juliana was all smiling and sticking her tongue out and babbling.    We kissed our adorable little bubble-blowing girl goodbye.  She does not know what is coming.  We know that they are going to saw her chest in half and split her open like a lobster.  The nurses take her away, and we were left wondering if we will ever see our little girl again. 

The wait was not bad.  We were kept informed about every hour as the operation progressed.  The surgery took about four hours, then she was transferred to the Pediatric Critical Care Unit (PCCU). 

The nurses tried to prepare us for how she would look.  They showed us pictures of other children who had been through this surgery.  We finally were allowed to visit Juliana.  Kelly and I were surprised that she looked as good as she did.  We were both expecting to see far worse.  Yes, Juliana is a mess of tubing and sensors and wires.  She is on a ventilator, on at least a dozen intravenous medicines to control her heart and lungs, and is wired to at least ten different sensors giving real-time updates on her condition.  However - both Kelly and I have seen children in so much more dangerous conditions; seeing Julina like this was not shocking or surprising to us - we knew she had heart problems before we adopted her.  For what it's worth, there are newborns on this wing with a lot more tubing and wires and medicines. 

Juliana is chemically paralyzed and sedated.  If her numbers improve (lung pressure vs. blood pressure is the biggie) the doctors will start the process of waking her back up tomorrow night. 

We suspect that Juliana will be mad.  We hope that she will be glad to see us.

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

Monday, May 23, 2011

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

Saturday, May 14, 2011

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.