Friday, November 30, 2012

Dreadful, dreadful mitts

Let me start by saying it feels SO GOOD to be home. I can’t believe how well Matthew is doing since we got back to our house. It’s like he clicked into his old self, and he has energy and he’s not very fussy at all. I suppose I shouldn’t be honest about this, since I have some friends whose own kids have gone through cleft palate repair, and sometimes the recovery can be a little brutal. But at this point in the game, everything is going very well for us.

The hardest thing is that Matthew is supposed to be wearing these mitts to keep his hands covered so he doesn’t put them in his mouth. Most of you know that he’s a thumb sucker—our boy LOVES his thumb, especially as a source of comfort. So keeping the mitts on most of the time is very important. We are allowed to take them off when he’s playing and we’re close by supervising, so much of today I’ve been by Matthew’s side, watching his hands so they stay out of his mouth.

But somehow in the last 24 hours, he’s figured out how to jimmy them off his hands. No matter what I do—no matter how hard I Velcro them or whether I put them inside or outside his sleeves—he gets them off. He just shakes his hands really hard, and eventually they slide right off. Grrr.

So now I’m using safety pins to secure them to his shirt. That makes him even more mad, because try as he might, he can’t shake them free. He stands there shaking and shaking to no avail, poor little guy.

Dear me. I have to say, even though this is a big hassle for us, it’s SO worth it to keep his hands out of his mouth. If for some reason he punctured the top of his mouth, it might mean emergency surgery for us (back at Children’s) or a lot of pain or an open palate for Matthew. In my mind, it’s not worth the risk.

So the battle of the mitts goes on at our house—and although I wouldn’t say I’m a willing knight in the battle, I am doing my mama part to make sure Matthew’s newly intact palate stays safe.

The best news of the day, though, is just that our boy’s sweet disposition has returned. He ran around the house for about an hour today giggling and laughing at himself (mitts and all). It was such a joy to see. He’s taking his regular bottles, tolerating the pain medicine, napping/sleeping well, and being generally cheerful and normal.

We are grateful.

Here are a few shots of Matthew from today. If you know him at all, you can see that the spark has returned to his eyes. We have survived palate repair and are on the other side. Phew!

Just before leaving the hospital last night.

A moment of freedom with his hands!

Lots of drools (and check out the shirt--it used to be my dad's!!!)

The dreaded MITTS, abandoned for a moment of free-hand play

And that's an "almost smile." He's totally happy to play with his hands.

Thursday, November 29, 2012

Five Ounces Twice!!!

This is an empty bottle. Matthew's just had 5 ounces TWO TIMES. The nurse is working on our discharge papers now. Yee haw! I am so glad he's finally eating. Thanks for all your thoughts and prayers today.

A Whole New World (in his mouth)

It’s Thursday and we’re still here at the hospital. I had hoped that by noon today, I’d be able to type the glorious words “we’re going home soon,” but at this point I’m not sure when I’ll be able to say that.

Matthew is actually doing really well in general. We are still playing around with his medications, trying to keep him comfortable without making him really drugged or irritating his stomach. The craniofacial nurse practitioner (Bay) is coming in a bit to take a look at the inside of his mouth, but we anticipate that things are healing just fine in there.

So the only reason we’re still at the hospital is that Matthew is still on his food strike. I think he might be moving closer to tolerating food. He took about 2 ounces from the bottle this morning before pushing it away. He’s definitely progressing towards being his normal “good-eater” self. But until he can actually eat some food and work it through his system, the doctors are too worried about dehydration to let us go home.

The ironic thing, from my mama perspective, is that I think Matthew would likely be wiling to eat at home. We could sit in our normal chair so he could have a bottle, or I could put him in a high chair and the table and feed him solids like we usually do. But I do yield to the wisdom of the medical staff here, so we’ll just keep trying and hope for the best.

I have to admit that I’m really weary of the hospital right now. I hit a low point this morning feeling discouraged and frustrated. Fortunately my dad is here, so I got in the car and left the hospital for about an hour. It felt so nice to walk around University Village like a normal person—I could pretend, for 45 minutes, that I was just out doing some holiday shopping with the rest of the normal people at the mall. I also went to the grocery store and bought some food that sounded good to me. So now I’m back in the hospital room again, and it was actually nice to get that break.

I do keep thinking that part of what must be happening for my boy is that he’s adjusting to his new mouth. The top back of his mouth was totally open until Tuesday, when he woke up to find it closed. I’m sure it’s sore, and I’m also sure it must feel strange. Everything is different: swallowing, eating, moving his tongue around. And since he can’t communicate verbally with us, it’s not something we can talk about with him.

So I’m guessing he’s probably confused and trying to work with his newfound mouth—and we’re here in this strange space, and he has his hands in those darn mitts too. No wonder the kid doesn’t want to eat.

I’m trying to be patient—to remember that this is a small window of time that will seem like nothing when we look back on it. He will eat eventually. We will go home. In the mean time, I’m mustering up all the patience I have to see this day through.

Keep those eating cheers coming (Alyson, I loved your text last night). We’re doing the same. And let’s hope that soon I can update again and say we get to go home.

And lastly, I was thinking this morning just how much Matthew has changed and grown since he joined our family. Someone a few days ago (I think it was Erik) told me they hardly remembered Matthew with his cleft lip. It’s amazing how time flies, especially when we are busy parenting kids. I thought I’d include a couple photos of the “peanut” Matthew with his sweet cleft lip and his bald head just to remind you AND me of how many challenges we’ve already made it through!

Playing at my aunt's house in July.

Hanging onto the fridge BEFORE he learned to walk.
He's always loved that panda bear!

And here he is last Saturday night--such a big boy--walking, so skilled, and with more hair!

Wednesday, November 28, 2012

The Day in Photos

It's been quite a day, best shared in the pictures I've snapped as the hours went by. They are below.

Just wanted to give a shout out to the wonderful visitors who came to see us today: Tauni, Pastor Ann, Nina, Douglas, my parents, and Maya & Sam. And cheers to Erik who came last night. It's SO good to have people around us during these hospital days.

This morning saw Matthew tired and still in quite a lot of pain. He slept for a few hours in his crib.

Then Auntie Nina came to visit, and we decided to try a walk.

We realized at 2pm that Matthew's mouth had been open all day. Sore palate!

Daddy begins coaxing the bottle. Matthew takes a few sips!

And a few sips more. That's all he did today, but it's a GOOD start!

Marmie and Bapa bring Sam and Maya for a visit. All 3 kids play in the playroom.

Matthew enjoys many books read to him today.

We take his mitts off for a few minutes so he can enjoy playing with his hands.

Finally I get a "sort-of" smile from my boy!

"Oh, it feels SO good to clap my hands together."

A diaper change brings a new outfit: the yellow hospital baby scrubs (mitts included!).

Maya and Sam bring artwork to decorate Matthew's room.

And Maya draws two LOVELY birthday banners.

Even with the mitts, Matthew figures out how to play with his favorite panda bear.

It's been quite a day here at Seattle Children's Hospital. I don't know who is more tired out: Matthew or his parents. Aaron will go home and get a good night's sleep tonight, and I'll stay here and spend another night with Matthew. Thank goodness my dad will come in the early morning to be my co-partner tomorrow.

I am praying hard that our boy FINALLY takes a real bottle tomorrow so we can go home. Our nurse just told us that as soon as he's eating regularly, we can go home--which could be tomorrow or Friday. Yikes. I don't know how any of us will survive yet another night in the hospital. I'm banking on tomorrow being our "food day."

Happy Birthday, Matthew!

Well, being in the hospital probably wouldn’t be Matthew’s first choice for how to spend his 2nd birthday, but here we are so we’ll make the best of this day.

First a quick update: the night was long and loud, but we all managed to get some sleep, and I would say that Matthew is doing a little bit better today compared to yesterday. He’s still unwilling to eat anything—and we’ve tried every possible option: formula from a bottle, formula from a sippy cup, applesauce, yogurt, warm tea. I think his mouth must just hurt A LOT and putting anything in it feels terrible. We can’t go home until he’s eating, and we hope to go home tomorrow (Thursday), so food will be one of our goals for today.

Later this afternoon my parents will bring Maya and Sam for a visit so they can say Happy Birthday to their littlest brother.

I woke up thinking about this day a year ago. Last year, November 28 was a Monday night. It was just after Thanksgiving. We knew it was match day, so all day long I remember anxiously awaiting the potential call from Heidi, our China team case manager. We decided to go out to dinner at Bob’s Burgers and Brew, just to kill some time, and in the middle of our meal the phone rang and it was Heidi. I ran outside to talk to her, and she told me those magical words: “We have a match for you. It’s a little boy with a bi-lateral cleft and palate. His name is Xu Bo and today is his first birthday.”

I remember running back inside to tell Aaron, Maya and Sam, then driving home and opening up the email with the referral and photos. Since it was Xu Bo’s first birthday, we lit a candle, took photos, and sang “Happy Birthday” to him. In that moment, we hadn’t decided if we were going to say yes to his referral, but I remember telling Aaron that no matter whether he was going to be our boy or not, it was special that someone in the world was thinking about him and sending him birthday wishes.

And now we have that little boy in our family—in our arms—in our lives. What a special gift.

Since we are in the hospital for Matthew’s birthday, we celebrated last Saturday night when all our family was still in town. We sang Happy Birthday to Matthew, let him eat birthday cake, and helped him open his presents. I’ll attach a few photos to the bottom of this post so you can see us celebrating with our boy.

I know this is kind of a crazy day, but in the midst of it all, I’m SO grateful for this amazing human being who is part of our family. His giggles and laughter bring such life to our household. His courage and strength inspire me to bravely face whatever challenges come my own way. And the gift of his life is something I am thankful for each day.

Happy 2nd Birthday, Matthew. I know you’ll have better days (hopefully VERY soon), but even today, when you’re at your worst, this mama is so thankful that you were born, that you came to be part of our family, and that we get to watch you grow for so many birthdays to come.

His birthday cake with candle.

Our family of five.

First bite of birthday cake.

Let them eat cake!

He's ALMOST smiling in this photo.

Here he is opening a present from Grandma Russell.

Tuesday, November 27, 2012

He's All Done

Well, I’m happy to report that we’ve been assigned a room and finally, at 4:45 this afternoon, they wheeled Matthew into us. It’s SO good to see him. He looks like he feels wretched . . . I’m going to include a couple of photos of him at the end of this post, but be warned that he has just come out of surgery so he’s not looking his best (imagine that!).

We are grateful that he’s all done. It sounds like the repair was more complicated than our surgeon initially thought it would be—something about Matthew’s mouth tissue being fairly thin and his mouth already being pretty tight and there being a bunch of hard corners to repair. Anyhow, they had to spend some extra time with him in the operating room, but in the end, the repair is a success. Now we just need to be vigilant about keeping his fingers and other objects out of his mouth so it can heal.

I’m kind of bummed because the hospital is really full tonight so we’re sharing a room—and we are stuck in the bed that’s closest to the door, with no window view. We’re right outside of the nurse’s station, so it’s also very loud. I have no idea what kind of sleep Aaron and I are going to get tonight, but I for one will try and do some sleeping. I’m totally exhausted.

Aaron had a full line up of clients today, and soon he’ll join us at the hospital. My mom will go home sometime this evening. Maya and Sam have been with my dad all day, and they will be glad for Marmie to come home so they can hear all about how Matthew is doing.

It’s been a long day for all of us.

We are expecting some visitors tomorrow, which will be nice—Being in the hospital with a child is kind of a surreal experience. I’ve already eaten enough food from the hospital cafeteria to last me a lifetime!! But I expect to be here until at least Thursday.

So the next few days are filled with trying to keep Matthew as comfortable as possible while also encouraging him to eat. He needs to be drinking and peeing well before we can go home. Right now he’s mostly resting, although he wakes up and whimpers once in a while. My mom was singing to him a few minutes ago and he gave her a couple of good smiles. We’re both wondering if perhaps he’s hearing our voices more than he used to. It will be fun to see how his newfound hearing plays itself out.

Anyhow, just want to say again how much I have appreciated all the texts and messages and emails today. I have carried that strength with me all day long. If you are a praying kind of person, please pray for Matthew’s healing and that we can do a good job managing his pain. I’m SO grateful for the deepened level of attachment we have with him now in November as compared to when he had his lip repair in August. I feel confident that I can comfort him with my words and snuggles.

And as ever, I remain both SO sorry that he has to go through all of this (one of those unfair things about life) and also so grateful for the care we receive here at Seattle Children’s. It’s an amazing place, both for kids and for parents. I don’t know how we’d do this without such child-centered care.

I realize he looks rather wretched in this photo. I suppose he FEELS wretched too.

Here he is getting some sleep. Those mitts will have to stay on his hands for a week or two . . . no fun!

A Little Mid-Day Update

I just got paged and got an update from the operating room. Looks like everything is going well. Dr. Tse (pronounced “Jay”) is still working—he’s a very meticulous doctor, for which we are so grateful. I just told my mom that if there is one person in your life whom you want to be known as very “meticulous,” it’s your plastic surgeon. Hooray for Dr. Tse. The nurse also said Matthew’s vitals are VERY stable and he seems to be peacefully resting, totally unaware of the major reconstruction going on in his mouth.

I talked with the Ear, Nose & Throat surgeon about 2 hours ago, and she had successfully placed the tubes in Matthew’s ears. She also said that there was a significant amount of fluid in his ears, which was probably affecting his hearing in a major way. She thought when he woke up, he’d finally be able to hear normally . . . wow, what an added bonus to today’s many procedures.

Mom and I are sitting in Starbucks. I just finished a cappuccino, and Mom is drinking some tea. She’s playing cards. I was reading, and now I’m on the computer for a few minutes. We’re looking out at the sunny Seattle sky and the brilliantly changing leaves (I still see red and orange leaves out there!). Being in the hospital is not my favorite thing in the world, but today feels manageable and pleasant. I’m really glad Mom is here with me—she’s a good companion for a day like today.

More soon. I’m going to add a couple photos to this email—taken last night as we were preparing for surgery. The first two are at the dinner table. The other is right after his bath. I had to wash him with this soap called Hibiclins—it’s slimy and has to sit on his skin for five minutes. Fun times.

And I tell you, for the life of me I can’t get any pictures of Matthew when he’s smiling. He is actually a very smiley kiddo, but the minute I pull out the camera, he gets this ultra-serious look on his face. Last night was no exception. But there he is, totally unaware of what the next day would bring for him. My only consolation right now is that he’s still blissfully unaware. In a few hours, he’ll wake up and have to start dealing with pain and healing, but right now I hope he’s dreaming of something happy and glorious. ZZZZzzzzzzzzzzzz.

Messy from yogurt!

No smile, but he's got animated hands.

After the bath. He actually LOVES baths--he just hates cameras!

Surgery is On Its Way

We’re at Children’s Hospital right now and Matthew has gone into surgery. We had big questions this morning about whether or not they were actually going to do the procedure—especially since Matthew had been battling a cold last week, through the weekend, and into this week.

However, when the anesthesiologist came to examine him, she said his lungs sounded clear! So we got the green light.

At around 9am this morning, I gowned up in the big white suit (again!) and carried an awake Matthew into the operating room. He’s such a trooper with all these surgeries and procedures—he fussed a little bit, but was mostly just chill and looking around. He once again had on a little, tiny Looney Tunes gown, and these giant red socks. I have to admit that he looked adorable.

I loved seeing the friendly, familiar face of Dr. Tse, our surgeon, in the operating room. His nod and smile reassured me that he would once again take good care of my boy.

So now we wait. Mom is here with me again this time, so I have a very patient, calm companion for this day. We expect to hear a few updates as the procedure goes along, but I don’t think we’ll probably see Matthew until about 2 or 3 this afternoon.

Dear friends and family, we appreciate your continued prayers and thoughts for Matthew throughout this day. I am SO grateful that the surgery is going as planned—that soon he’ll be done with the palate repair—and that we can begin the healing process.

I’ll update more as the day goes along!

Saturday, November 17, 2012

Northwest November Adventures

So far this November, we've been blessed with amazing weather and a special visit from some dear friends.

One thing that has become very important to us is to cultivate friendships with families who have also adopted children. We feel lucky that our friends the Dolenc family, whom we've known and had many adventures with over the years, were a year ahead of us in their own adoption adventure. One year before we brought Matthew home from China, they brought their son Toben home from Ethiopia. We have loved the connections we've shared since we both got home with our boys, and felt incredibly blessed to spend five days with them earlier this month.

They came all the way from Colorado to visit us, so we just HAD to show them some of our favorite spots in the Pacific Northwest. A day trip to Whidbey Island complete with a gorgeous, oceanside hike, was probably the highlight of our time together.

It has been so nice to do some normal things in the midst of Matthew's medical procedures. Next Tuesday (November 27), we take him to Seattle Children's Hospital to have his cleft palate repaired. We've been told this is probably the "worst" surgery of all, since the mouth is very slow to heal and kids feel really down and out for quite some time. Of course the surgery and recovery are kind of looming above us, so we have appreciated the distraction of a visit from our friends, as well as other fun times with people we love.

Here are some shots from this month so far. I anticipate several posts about Matthew's surgery and recovery, but I thought it would be nice to have a couple showing our semi-normal life, which is how things are most of the time.

Here are Sam and Matthew with their cousin Parker on an ordinary November play day.

The Russell and Dolenc kids on our Whidbey Island hike.

Me and my girl!

Isn't this view breath-taking? I ran ahead to shoot the hikers coming across this ridge.

Maya and her forever-buddy Lucie.

Sam LOVED running down this sand spit.

Walking back to the car on the beach.

I wanted you to see some Matthew tickles. This boy LOVES to giggle.

And here he is laughing some more.