Saturday, October 31, 2009

1:15: And We Wait

Princess woke up and downed a cup of juice, which means we can go home.

But there's a really sick kid on the floor, so the doctor has to deal with him before she can come back to us and sign all the papers. The nurse hopes we're out of here by 3:00.

There is no rest in a hospital. Just when she falls asleep something or someone wakes her up. An MA to take her temp, a med student to ask questions that we've already answered for the doctor, the cleaning lady, the loud speaker paging docs, another kid crying. I'd like to bolt the door shut so my tired little girl can sleep and start to feel better.

Back at the Hospital With a Grumpy Girl

She's grumpy and highly annoyed by the tubes and all the poking and prodding.

Princess is a stubborn girl and when she doesn't want to do something. That's it. She's not doing it. She absolutely does not want to drink out of the syringe anymore. But she can't get released until she drinks. So we are holding her head and squirting it down her throat. She did eat a few bites of pudding, too. So hopefully, it will be enough and we'll get to go home this afternoon.

The inside of her mouth looks pretty nasty. They cut the roof in two different places then stretched her skin and stitched it together. It will grow as she grows.

She's very tired. She only slept in three hour stretches. Jonathan slept on a reclining chair next to her crib. We are thankfully in a private room.

I think she will do much better at home. We can't wait to get the OK to hit the road, because there truly is no place like home.

Friday, October 30, 2009

Finally Some Sleep

Deciding on a special needs adoption and actually living through the treatment and surgeries are two very different things. Princess is in much more pain than I thought. I am exhausted, stressed, worried, but glad it's over.

Honestly, I am not looking forward to 4 more surgeries in the next 5 to 10 years. I don't like to see her hooked up to monitors or in pain. But I am thankful for the care she is getting. I'm thankful that we live in a country where being born with a cleft really isn't that big of a deal. It can be fixed. She will live a full life. She will learn to talk.

Princess is finally in a deep sleep. The docs are hoping to release her tomorrow. We decided last week that Jonathan would be the one to spend the night with her and I'd go home. He does so much better on no sleep than I do.

So I am heading home before I'm too foggy and tired to drive. I'll be back tomorrow morning and hopefully all three of us will be home by dinner.

It Isn't Pretty

Princess had trouble waking up.

She kicked, screamed, cried silent tears, and tried to rip her IV out.

She is mad because of the arm restraints.

She is mad because she has no idea where she is.

She is mad because the roof of her mouth is raw and cut in two different places.

She was so mad, confused, and in such pain she arched her back and we couldn't even hold her.

Then she got another dose of pain medication and after a while she calmed down and slept for two hours in my arms. She is drooling blood and her lips are cracked and raw, too.

But at 3:00, she looked up at me and smiled. Then waved bye-bye to the nurse and downed 2 cups of juice. She is sleeping peacefully in the crib now.

It's not pretty, but it's getting better.

10:15 am: Wake up Call

They are waking her up now.

The hearing test went well. One ear is normal and the other is borderline normal. We were worried about hearing issues, but with the tubes everything should be resolved.

We hope to see and hold her within the hour.

It's 9:00 am and she finally has a palate

The plastic surgeon just came out: He's done!!! She has a closed palate. She is a double thumb sucker, so she will be in arm restraints. He did say she will be very, very unhappy and sore.

Now they are starting the ear tubes and ABR hearing test. She likely has some hearing loss, but now we will know exactly how much she can hear. As I understand it, the ENT team will stimulate her eardrum and then measure her brain waves. The test should take an hour.

Thanks for all the emails. We could never get through this without support from friends and family!

Early Morning Car Problems

The alarm sounded at 4:00 and we headed out the door at 4:45. Princess was sleepy, but talkative and all smiles. By 5:00 we knew something was terribly wrong with the minivan. Then engine felt like it was revving, then dying, the revving again. We got off 290 and headed back home. Thankfully we made it.

By 5:10 we had switched cars and were back on the road. We arrived at UIC at 5:45. Evie was still playful and happy. Then she got really happy (and a little tipsy) when the anesthesiologist gave her "happy medicine." It made her limbs floppy and eyes droopy.

Then we handed her off and watched her disappear into the OR.

My little guy's preschool teacher reminded me on Wednesday that when you hand over a child for surgery it's a reminder that that child isn't really yours. She's totally in God's hands.

So now we wait.

Friday, October 23, 2009

Genetic Testing

The day after we accepted Princess' referral I googled cleft lip and palate with the cardiac disease Tetralogy of Fallot. 141,000 sites came up. All of them describing a chromosomal defect that the vast majority of people with both Tetralogy of Fallot and cleft lip have.

I slid my laptop in front of Jonathan. "Read it," I said. "She could have DiGeorge Syndrome. Heart defects we can handle. Cleft lip and palate we can do. But we cannot deal with this."

I reread the medical jargon over his shoulder: mental retardation, severe learning disabilities, hearing loss, compromised immune system, schizophrenia.

He slid my computer back to me and shrugged his shoulders. "We don't know she has it."

"We don't know that she doesn't have it."

"You're focusing on the worst case scenarios," he cautioned. "It also said she could simply need to take calcium supplements."

He was right. The scale and symptoms of DiGeorge Syndrome varied. Some kids who have it show no symptoms. But even still, I couldn't sleep that night.

The next morning was Sunday. I felt half sick. "I'm not sure I can parent this child," I cried. "I'm sure that's why she wasn't placed with the other families who reviewed her file. People get scared when they hear the word "syndrome."

Jonathan sighed. "Let's talk to the specialist at Children's who reviewed her file. Let's see what he says about DiGeorge."

That morning, I sent the International Adoption specialist from Children's Memorial Hospital an email asking if he thought our future daughter could have DiGeorge Syndrome. He emailed me back within 20 minutes and said there was a slim chance, but it could only mildly affect her. The truth was we wouldn't be able to have genetic testing to find out if she had it or not until she was home.

"Do we move on with her adoption?" Jonathan asked me.

I sighed. "This is really about faith."

Jonathan nodded. "It's totally out of our hands. And you can't worry about it."

"Then we move forward," I said. "And I'll do my best not to worry about it."

Fast forward to early October. Every doctor that saw Princess suggested she be tested for DiGeorge Syndrome. So two weeks ago, we met with a team of genetic counselors. They oohed and awed over her. Then measured her eyes, which were too close together, and her ears, which were too low. Then they drew five vials of blood.

And we waited.

"What if she has it," I asked Jonathan.

"So what?" he said. "We can deal with it."

I knew I could deal with it. She would still be my girl. I had no regrets about her adoption. Our family would be incomplete without her. I could handle DiGeorge Syndrome--because I wanted to be her mother.

The next day the genetic counselor called with the test results.

Princess is not missing a part of her chromosome. She doesn't not have DiGeorge Syndrome. Both of her birth defects happened independently--not part of a syndrome.

Our adoption journey has been based on faith. We've been tested in ways that I never imagined. But what's harder for me to imagine is what would have happened had we said no to Princess because of what might have been.

It's just unthinkable.

Wednesday, October 21, 2009

Closed Doors

People ask me all the time if we'll go back to China for another adoption. I try not to laugh. Because it's like asking a mother who has just given birth if she plans on getting pregnant again right away.

But I can't laugh at my sons when they ask. When we first started this process in 2008 my desire for my boys was to first have a little sister. I think a siblings are one of the greatest gifts you can give a child. But I also wanted them to learn about compassion for children in the world who live with much, much less than they do. Even still, I was a little taken aback when  my six year old announced that there was still an empty seat in the minivan. The four year old also chimed in that we had an extra chair at the dinner table.

Almost once a week the boys ask if we can go back to China for one more little girl. They remind me that there are many, many more children who just need a mommy and daddy to love them.

We love our girl. And I will be forever grateful for our adoption experience. My family has been blessed beyond measure. But she has special needs. And demands a lot of attention and time. I want to give her that time and attention. I want Evie to grow and develop and catch up with her peers. I absolutely cannot image caring for another baby right now. I know people do it--and do it well--but I doubt that I could juggle it all.

So we told our boys at dinner that our family was complete. We have three beautiful, smart, amazing, (and mostly) healthy kiddos. We are thankful for every one of them.

So for now the door to adoption is closed. But I'd be lying if I didn't admit that there is a faint light filtering in through the crack.

Monday, October 5, 2009

Beginning of Our History

I spend every waking moment with Princess. We have tea parties, push around a shopping cart, rock, read books, and eat...all the time. She demands so much attention my house has never looked worse and it's hard to make a meal with her perched on my hip.

I'm not complaining. She needs the extra TLC. And I'm happy to give it to her. But today it really hit me, I can tell you this child's schedule minute by minute. I can tell you what she likes, how she likes you to gently tap her back (and if you don't do it right, she'll move your hand), I can tell you how much of a kiwi she ate and how many calories she consumed throughout the day. I know her favorite shoes, blanket, and bottle.

I can't tell you, however, when she started crawling, how much she weighed at birth, or when she first smiled. I don't know how she recovered, from open heart surgery without a mommy and daddy to rock and hold her. I wasn't there when she was left completely and utterly alone almost two years ago when she was abandoned.

I often wonder what did she do in the orphanage all day? Was she in her crib? Did she have friends? A special nanny? Did someone come running when she cried?

An orphanage is a complicated, sad place. There are too many kids and not enough help. So many kids are sick and my girl was one of them. With a very serious heart condition, that would have killed her, she was likely blue, sluggish, and very sick.

This much I know about her She is not a mistake. She is a fighter and a survivor. I may not have been there physically in the beginning, but I was praying for my daughter I hadn't met yet.

Our history together started on August 15. I cannot change her past. I can help her mourn and move on with a family who loves and adores her. That's my job. Simply because I'm her mom.