Lily's First Haircut

She was not a fan...lol!

No more baby mullet!

We also got her Hanna Andersson pilot hats in the mail. Thank you to the reader who suggested these! She didn't like it the first day but she's getting used to it now. Now maybe her poor little ears can finally heal. We don't keep them on at night, however...they are very stretchy and can twist around so that her mouth and nose are covered. I don't want her to smother or choke!

All three of us are getting better, but we still need prayers for complete healing and Lily remaining healthy for her surgery.

Lily's First Letter!

Look what came in the mail today:

"What's this thing?"

"A letter from the insurance company saying they are going to pay for my hospital stay?! OH YEAH!"

Friends, please keep on praying for Lily to feel better. She was doing great over the weekend but today she has a fever again and is very cranky. Her pediatrician thinks she has a sinus infection (taking after Momma I guess) so we've got another antibiotic. Please pray that she tolerates this one (ie, doesn't throw it up) and that it clears this infection for good.

Three Weeks Home!

"I've been home for three weeks now!"

"Don't you think my legs are looking chubbier??"

Lily's heart cath surgery has been rescheduled for August 11. She is definitely feeling better (as am I), but we still need prayer for a complete recovery from our ickyness. Also please pray that Lily STAYS healthy until her surgery! We don't want to have to reschedule again, she needs to get this heart surgery ASAP. Thanks for all your prayers!

The Reason

I finally have a chance explain why we're at Roanoke Children's hospital right now!

Lily has had a snotty nose and fever for the past five days. A few times she vomited after taking her amoxicillin. Yesterday morning, when she vomited twice more, I decided it was time to call the pediatrician to see if we could take her off the amoxicillin and try something else. When I talked to the nurse and explained what was going on, she wanted Lily to be seen by the doctor. Her pediatrician is on vacation this week so we were sent to another pediatrician who is covering for him.

We had an appointment at 6pm. We fully expected this to be a short, everything's fine, take her off the amoxicillin, etc, visit. The doctor was very nice and spent a loooooong time listening to her heart. Her oxygen saturation (in the blood) was low, however. While we were at the pediatricians office it never got above 74%. Most healthy adults and children have at least 95%+.

The doctor was concerned about her low oxygen saturation, the fact that she's had a fever for an extended period, her lack of medical history, her serious heart condition, and having Down syndrome also compromises the immune system. She said that Lily could get very sick, very quickly, and wanted to admit her to the hospital to be safe.

She didn't quite send us to Roanoke Children's by ambulance, but almost. We were able to go home and grab some stuff before driving up to Roanoke. Rob's parents met us at the hospital.

We were admitted and she was put on oxygen right away (the tubes going into her nose). Of course she hated that, so they had to put "no-no's" on her arms so she couldn't reach up and yank it off! Here's a picture from last night:

She also had a fever of 103 when she was admitted. She's been taking Tylenol for the fever and had the oxygen on all night. Her numbers have been getting better (higher), and it seems like her "baseline" is about 84%. Right now she is off the oxygen and her numbers are around 90%! We cheer every time it goes above 90 :)

Her heart catheter surgery for tomorrow has been canceled and we are waiting to hear back about rescheduling that. We *might* be discharged tonight! The latest would be sometime tomorrow. We will be getting an oxygen tank at home to use as needed, as well as a way to measure her numbers if we suspect they are low.

She was also given a strong antibiotic, but the doctors here think she just has a cold. They've done some blood work and her thyroid numbers came back high, so now they are doing more blood work to check that out. Her chest x-ray looked fine and her lungs are clear.

How you can pray specifically: for her oxygen saturation numbers to remain in the high 80s - low 90s without the oxygen. Also pray that she would get over this cold! I'm still feeling pretty awful so please also be praying for me to recover. Pray for a quick rescheduling of her heart cath surgery.

That was probably way more information than you wanted to know :). So that's where we are. Thank you for all the encouraging comments and suggestions on my previous post!

Grieving

How do you tell if a baby is grieving?

That's the question I've been asking myself the past few days. I think Lily is grieving her losses, which is very natural, but it's hard on this Mama who feels a bit helpless.

So why do I think Lily is grieving?

Well, she hasn't smiled much in the last week. She wasn't smiling a lot to begin with, so this is especially hard for me. There is a reason I don't have any good pictures of her smiling: she doesn't. Her self-soothing behaviors have gotten more destructive. We took her out of the crib because she started banging her head so much. She's been scratching at her ears constantly and they are bleeding, inside and out. She has scratch marks all over her face. She's been a lot fussier.

To be fair, she also isn't feeling well. She's had a fever on and off since Friday. Her nose is stuffy and snotty and she hates it being cleaned. Sometimes I feel like all I do is torture her! From one form of torture to the next...sigh.

Anyone reading this have any insights? Been there, done that? Wisdom, advice? Or just words of encouragement? I can use all of those things right now.

Three Sick StClairs

Today was not a fun day at our house. Lily has had a runny nose and low fever for the past few days and this is what I woke up to:

I also woke up to a sore throat, which for me is the beginnings of a cold. I probably caught whatever Lily has. To top it all off, Rob has been throwing up for the past 36 hours and Lily threw up twice tonight (on Rob). UGH!!

We also heard from UVA about Lily's surgery: it's Thursday! As in, less than a week from now. Yikes!

Please pray for all three of us to feel better. I thought I'd have a little more time as a Mom before I had to deal with the whole family being sick simultaneously. It's not fun. Your prayers are needed and greatly appreciated. Thank you!!

The Heart of the Matter

When we committed to adopting Lily we knew she had a heart defect. When we got to Ukraine we hoped to learn exactly what, but they didn't have a specific diagnosis. It didn't matter to us as far as the adoption goes; we would have taken her no matter what.

We were able to see a pediatric cardiologist this week to get a confirmed diagnosis via ultrasound. Her condition is more serious than we had originally thought.

Lily was born with a Ventricular Septal Defect (VSD) and an Atrial Septal Defect (ASD). Both of these are holes between the left and right chambers of the heart. Her VSD is very large: 12mm in diameter. Usually an infant born with these conditions has surgery to repair the holes before six months of age. Lily did not receive that surgery in Ukraine.

Without the surgery, the blood pressure in her left and right ventricles is about the same. One side pumps blood to the lungs and the other side pumps blood to the rest of the body. What this means is that the blood vessels in her lungs are getting about three times the amount of pressure they should get. Over time, the blood vessels in the lungs may thicken to compensate for the increased pressure. Lily will have a heart catheter surgery to see if this is the case.

If her blood vessels have not thickened too much, then surgery is possible to close the holes and she will have a normal life expectancy. If her blood vessels are too thick, then closing the holes would actually do more damage because the lungs would not get the amount of blood pressure they are used to, resulting in heart failure. In this case the holes will not be repaired and her life expectancy is reduced to about 20 or 30 years.

Our next steps: We are waiting for a call from the hospital at UVA to schedule her heart catheter surgery. After that we will know more.

How you can pray: That God's will would be done in her life. We will love her as long as she lives, however long that is. Of course right now we are asking God to keep her blood vessels at their normal size so that surgery is possible.

One more thing.

Lily is not the only orphan waiting for heart surgery. Please, PLEASE consider donating to Vanessa and Lilly's adoption grants so they can find their forever family. Maybe you are reading this and feel God moving in your heart to consider adopting one of these girls. I will help them in any way that I can.

Vanessa's page 

How can you not love that sweet face and big blue eyes???

Right now she has $4,660 in her grant fund!

Lilly's page

Right now Lilly has $2,042 in her grant fund.

Little By Little

Lily is exploring her world.

She's standing more:

Claiming cat toys as her own:

Crawling to Momma:

Enjoying cardboard boxes:

Even learning to play with the cats!

And the cats are learning to play with her:

Yesterday we went to see a pediatric cardiologist and got a lot of information. I will share all of that tomorrow.

Meeting Great-Grandparents

Today Lily met two of her great-grandmothers:

Meeting new people is hard work!

Pics of the Day

This picture's for Holly: hippo pajamas!

"What's that thing in my face, Mom?"

"I'm not ready for my close-up!"

"Ok, now I am."

"This is my new place to eat."

Today Lily met Christina, Nicki and Mathis. She also did something she's never done before: she handed Mommy a toy! It took her a few tries to actually let go, but she did it! Mommy is so proud :)

Saturday, July 2: Traveling Day

We started the day (not so) bright and early at 2am to pack. We let Lily sleep until it was time to leave at 3:30am. We got to the airport and everything went fine. When we went through security I was even allowed to keep Lily in the Ergo (though I did get a pat-down).

We met the Coleman family while waiting for our flight, which left at 6:45am. It's funny how many "airport reunions" we've had with other RR families. The first flight was two hours and Lily did pretty well. Daddy fell asleep during take off and Lily fell asleep on his chest. Mommy also slept a little bit.

We arrived in Munich, Germany and had a 3 hour layover. It took a little while to get through security again and I had to take Lily out of the Ergo for that (boo). While we were waiting at the gate we met the Mounts family! Another airport reunion!

Then it was time for the trans-atlantic flight from Munich to Dulles. We were able to pre-board and got the bulkhead seating we wanted! There were four in a row and I guess no one wanted to sit next to us (ha!) so we had all four seats to ourselves. It was wonderful! Lily had about four bottles on the flight and they warmed them up for us. The flight was eight hours and we were hoping Lily would sleep for most of it but no such luck. She finally fell asleep during the last hour and a half.

We landed in Dulles, put sleeping Lily in the Ergo and she fell right back to sleep. In fact, she slept all the way through customs, passport control, and security. She even slept though us taking her out of the Ergo to go through security and putting her back in! I kept her on my back for another hour or so once we got to our gate since she was sleeping so peacefully.

Our last flight from Dulles to Roanoke was very short: about 30 minutes in the air. Lily was the fussiest on that flight for some reason. When we arrived in Roanoke our friends Dan and Suzanne were waiting for us with our car, and the Moore family also surprised us there and got to meet Lily!

We put Lily in her first carseat and she really didn't mind it. She fell asleep on the drive back to Blacksburg and Daddy carried her right upstairs to the Pack 'N Play, where she slept for the rest of the night.

And with that, we were officially Home!

The Past Few Days...

...we've just been hangin' out, trying to figure out this little girl who is now our daughter!

If she cries hard enough, food comes out her nose!

And if she gets three vaccines in one day, she will pass out on Mommy:

Friday, July 1: Embassy Day

I'm trying to get caught up on last week before I forget all the details!

Lily woke up around 6am on Friday morning. We fed her two bottles of mana kasha (aka cream of wheat). Around 9:45am we still hadn't heard from anyone about our Embassy appointment so we called our facilitator. Good thing we called because our driver was picking us up in 10 mins! So we put Lily in the Ergo and hurried out the door.

We got to the Embassy and went through security. Lily actually slept in the Ergo for that part! We had a bunch of paperwork to fill out/sign and fees to pay, so we did all that. It really didn't take too long. Then it was off to get her medical evaluation.

We did lots of waiting to see the nurse, then the doctor, then we had to wait for the documents to be ready. Luckily there was a little Cafe where we had lunch. We tried to feed Lily some of the things the orphanage told us she would eat (soup, mashed potatoes) but she was having none of it.

When the documents were ready we left to go pick up another family and head back to the Embassy. We sat in traffic. Lots. Of. Traffic. Back to the Embassy, back through security, more waiting. Finally the visa was in our hands!

Back in the car, back to the Traffic. It took us another hour to get back to our apartment. It was 5pm at this point, Lily hadn't eaten since 9am and we were exhausted. Rob went to the market to get more milk for her and I called Masha to see if she could come over. Thankfully she and her two roommates, Oksana and Helen, were able to find our apartment. They came over and cooked us a wonderful dinner, and of course met Lily.

I'm sorry I don't have any pictures from that day, it was just too crazy. Next up, the flights home!

Thursday June 30: Gotcha Day

We started the day early by packing, then headed over to the lawyer's office to pick up Lily's birth certificate and passport. We were very lucky that we were able to get the old, "red" passport that is made in region, so that is why we got ours so quickly. Then we hurried over to the orphanage and signed a bunch of stuff, I don't even remember what.

Lily had a bank account that needed to be closed, so then we headed to the bank and signed a bunch of more stuff. Then they handed us 25,000 hrivnas (about $3000) in a plastic bag! An orphanage worker then went with us to the open market to buy stuff for the orphanage. We payed for some food, school supplies, paint, plaster, trim, computer desks and fans. We still had about half the money left, so we went back to the orphanage and did some more paperwork to make the official donation.

Then they brought Lily to us dressed in her Gotcha Day outfit and we took a few pictures:

One of the orphanage doctors came in and started telling us all the medications she is on, when to give them, how to give them, etc. It was at this point that I started freaking out a bit. She is on four medicines for her heart condition. They gave us one week's supply. Each dose is a powder wrapped in brown paper. It feels like we are giving our daughter cocaine! Then we signed some more stuff and hurried out the door.

We went straight to the car and made the four hour drive to Kyiv. Lily did great in the car, but she did get hungry and all we had to give her was cherry juice. We discovered later that night that we gave her waaaay too much, but it was all we had.

We got to Kyiv and hit traffic. We switched cars/drivers and sat in more traffic until we got to the Embassy a little after 5pm. Our driver dropped off some paperwork for us at the Embassy and then took us to our apartment.

Rob went to the store to get some food for Lily: we thought she would eat some baby food and formula. We were wrong! Thank goodness our friend Zlata called and we told her that we couldn't get Lily to eat anything, but we knew she was starving. Rob went back to the store with Zlata on the phone and got milk and "Mana Kasha". Rob fixed her bottle and, thank goodness, she ate it.

I can't say enough how amazing Rob was that day. I was a puddle. Lily was screaming and crying, all I could do was keep her from crawling off the bed (and cried myself). Finally she fell asleep and we did, too.

I know this post isn't very well written, and there are SO many details I'm glazing over, but I just wanted to get the gist out there. Lily is waking up from her nap right now and I need to take one myself, so that's all for today.

Second Day Home: Pictures

I'm too tired to write a "real" post tonight, so pictures will have to do :)

Lily's first bath:

She didn't mind it at all!

All wrapped up...

Met Aunt Holly today!

First Day Home: Pictures

"Hmmm, what's this?"

"Whatever it is, I'll chew it."

Her first Downward-Facing Dog!

"This textured mat is nice."

"I am a Daddy's Girl!"

"Hi, Grandma!"

"Hi, Grandpa!"

"Grandpa, you're comfy."

"Look at my new trick!"

With a little help from Google we finally figured out what we are feeding her, lol!! In Ukraine it's called Mana Kasha. That translates to cream of wheat! Thank goodness we can buy that here. So far the only thing she will eat is a warm bottle with real milk (no formula) and cream of wheat mixed in. More on that story when I blog about Gotcha Day and the days that followed.

We Are Home!

The last three days each deserve their own post, and I'll get to that. I just wanted to let everyone know we are home and it feels SO good! More details and pictures coming, I promise :)