A Big Ol' Lia Kate Update

We have been home almost four months with our little girl! On one hand, it seems like time is flying by and on the other, it seems like we've had her a good while now. I guess the early days of jet lag and her insecurity made for long days and nights. She is doing a million times better these days and already acting like she owns this place and all the toys here in it (much to Britton's dismay). She has turned into an affectionate, happy, silly little girl who loves playing with her brother, loving on her bunnies and baby dolls, and showering us all with kisses. It has been quite a transformation. There is a lot I want to write about, so here goes ...

Size-Wise

Lia Kate has grown a lot since we got her. For starters, she has gained four pounds. She started off at 16 pounds, then was a 17-pound 17-month-old when we got home, and then an 18-pound 18-month old and so on and now she is a 20-pound 20-month-old. One of the more surprising numbers is her head circumference. When she came home, her height and head circ were about 5% on the charts, and her weight was off the charts low. A month later, her head circ was higher on the charts. Typically, you do not want to see fast head growth at her age. However, with former orphans, they often have what is called catch-up head growth. Meaning, when they go from an institution to a loving family, their brain grows. It is really quite amazing. (Yes, the brains of institutionalized children grow and form differently than children who grow up in a family structure.) She has gained four pounds but I believe her weight is still low/off the charts. We're working on that.

On the Medical Front
We have taken Lia Kate to a lot of medical appointments in the past four months. Thankfully, the doctors have assured us that her medical issues are likely to go away in time and she will not have lifelong medical needs. We will continue to follow-up once a year with the cardiologist. He will check to see if her VSD is getting smaller. Her Chinese medical reported a 4mm VSD, but our cardiologist here found that it was ~2mm. This is great news ... it means the hole is getting smaller. We are hoping it will close completely but if it doesn't, it will most likely never cause her a problem.

We had a follow-up visit with the surgeon this week and he thought her incision was healing up well. She has not had any more leaking since the small leak she had post-op. As far as long-term follow-up ... she will have a MRI of her spine once a year for the next three years. If all is well then, that will probably be the end of all follow-up.

We also discovered, in the process of these doctor's appointments, that Lia Kate has some kidney reflux. This is when urine goes from her bladder back up into the kidneys. To our knowledge, her reflux has not resulted in any bladder or kidney infections since we've had her. To prevent them though, she is on a preventative antibiotic for the next year. We will follow-up with the urologist yearly. He said she has about a 90% chance of growing out of the kidney reflux. If she doesn't outgrow it and she starts having kidney infections, she will have to have surgery to stop the reflux.

Her three medical issues may sound a little overwhelming to some of you, but to us (especially being on this side of her surgery) it really hasn't been too big of a deal. I guess when you've had a child lying in the NICU fighting for his life, things like Lia Kate's "fixable" medical needs just don't seem like that big of a deal. We are grateful that she is doing so well. And above all, she looks and acts like a very healthy little girl. She is a great eater and she looks so healthy now that she has started putting some meat on her little bones.

Speech
Lia Kate has blown us away in her speech development. We did not expect her to say anything for awhile since she had suddenly been immersed into a new culture and language, but she is picking up words right and left. Within a week of being home, she was saying "mama", "dog" and "dada", and within a month of being home she had over 25 words. I have lost count of how many words she has now but she is very good at repeating and imitating. Aside from her English words, she jabbers all the time, especially in the mornings, and I often wonder if she is speaking in Cantonese, or Cantonese-jabber. It is funny when she gets going. I am thinking she is going to be quite the little talker when she starts speaking in sentences!

Sleep
She is sleeping really well these days. When we were in China and first home, we struggled with getting her to sleep and keeping her asleep. We finally put her in our bed as we figured she needed the security of being near us. She has been in our bed for 3 1/2 months and it has worked wonders for her security and attachment. She is doing so well and I'm so glad we went for the "family bed." She was showing signs that she was ready for the crib (falling asleep immediately and sleeping through the night), so we decided to move her to the crib. We moved the crib to our room, and she has been sleeping soundly in it for a week. She only cried for the first two days, and now she practically giggles when you put her in bed. A huge part of her sleeping security is that she finally attached to a comfort item. She has a soft blanket with a big stuffed bunny on one corner. She loves her "bunny blanket" ... but probably not as much as I love bunny blanket! She does not nap for long (at most an hour), but as long as she sleeps through the night, I am happy. We will move the crib to her room after awhile ... want to get her good and secure in her crib first. Since many chidlren adopted from China have sleep issues (as do many that come from her orphanage), I am just so thankful she is doing so well in this area!

Socially
She is a happy, outgoing little kiddo! She often waves at people we pass in the store and she blows kisses to everyone, and bats her eyes very slowly, which always makes people laugh. But she can also give her infamous little scowl if someone gets too close for comfort. She is a funny little thing.

Blowing kisses to mama.

She loves her Daddy now and has no problem waving "dye dye" to me and going somewhere with her daddy (hallelujah!). When Danny comes home, she and Britton race for the door to give him hugs and kisses. Lia Kate and Britton play well together ... for the most part. They have their moments like any kids do. Most of the issues are on Britton's part, but we're working on it. I guess these kind of transitions take time. ;o) In the good moments, they laugh and cackle at each other. It is funny to see them crack each other up.

We are going to start letting her try Mother's Day Out this summer to get her ready for her two-year-old preschool class this Fall. So far, she has not been to church nursery or anything like that because it is too similar to an orphanage setting. I am hoping that she'll be ready when we start trying it out this summer.

Lia Kate making her "funny face." She is a total crackup.

We are really loving life with our daughter! Thank you for going on this journey with us. So many answered prayers have gotten us to where we are today. We are so thankful for you and for your love for our family.

Our Smiley Girl

This is one of my favorite pictures of Lia Kate so far. She smiles all the time, but rarely smiles for the camera. I have to get an action shot to catch a smile ... but boy does a smile light up her face?!

I am working on a long Lia Kate update ... hope to have it up soon!

Welcome Home

One of the really special things we've been able to do lately is welcome home friends who are coming home from China with their newly adopted child. Just this past Friday, my friend Kelley came home with her daughter Virginia Grace.


Lia Kate and Virginia Grace checking each other out.


Love that these two are the same age ... I'm sure they'll share a special friendship over the years!



And here we are welcoming home Fisher and his family back in February ...



Waiting for Fisher to arrive ... here is Hamilton, also from China, giving Lia Kate a hug. Fisher and Hamilton are 3-years-old and they both go to our church. It is so sweet to see these two little boys with Lia Kate! In fact, all three of them will be baptized together at our church on May 23.

Virginia Grace Day!

My friend, Kelley, and her husband finally met their beautiful little girl in China last night! Kelley and I were matched with Lia Kate and Grace back in October ... so she has waited a long time to finally meet her. I cannot wait for our girls to get to know each other! What a sweet friendship they will have?! Just wanted to share this precious little face with you and document this big day for Lia Kate's blog book. You can read more about Virginia Grace here.

Headed Home ... Again

Lia Kate's surgeon just rounded and he told us we could go home today ... again. She has not leaked anymore CSF since the resuture last night (yay!), so we are hoping that this did the trick and there won't be anymore complications. If we see more leaking, we'll have to come back. But, according to the docs, if it was going to leak again it should have by now. He told us not to worry about what is going on under the incision ... "no leaking, no worries." Assuming all goes well at home, we will see him again at an office visit in a couple of weeks.

On a fun sidenote, we just had a long conversation in the hallway with a family and their 16-month-old baby girl from China! They just brought her home in February. Fun to see two little precious Chinese girls together.

Anyway, we're headed home ... again!

Back in the Hospital

Well, Lia Kate has been readmitted to the hospital. I took her dressing off this morning as instructed and, for the first time, got a look at her incision. A few hours later, I noticed some clear fluid leaking from the top of the incision. I knew that it could be cerebrospinal fluid (CSF), but it was just a little, tiny touch of it, and I was hoping it was just the clear serous fluid that can seep from wounds. An hour later, there was more. I called the surgeon's office and they told us to go to the ER.

We saw one of the neurosurgeons in the ER and he determined that it was, indeed, CSF. He put a couple of more tight stitches where the fluid was leaking in hopes that it creates a pressure and makes the dural sac (which houses the CSF) close. If it still leaks after that, they'll probably do an MRI to see if they can see what is going on. And then they would probably do another surgery -- to open the wound and reclose the dural sac to prevent leaking. The doc we saw today said that spinal fluid leaks post-operatively in 10 to 20% of these surgeries.

Lia Kate is acting fine ... as if she hasn't missed a beat. She is active, playing, talking and generally just being the sweet, happy girl that she usually is. We are staying overnight for observation. We'll see what the docs say tomorrow when they round.

One of the complications that can happen with a CSF leak is that if fluid can get out, bacteria can get in. So, she is more at risk for meningitis. There are more risks, but we won't go there unless things get worse. The good thing is that the leak is a small leak. Hoping the problem resolves itself and we are home before long. Thanks again for your concern, prayers and encouragement.

We Got Our Walking Papers!

Here is Lia Kate with the surgeon. He just came in and told us we could go home today! Lia Kate is scowling in the picture ... little did she know what great news we just heard. Heading home sometime today.

Doing Well Today

Lia Kate had a great night here at the hospital. She and I both got more sleep than I thought we would. I was able to get her to sleep in the crib (at home she sleeps in our bed) and even though she was woken up many times in the night for meds and vital checks, she went back to sleep every time. Didn't even whimper. I think part of the reason is that I didn't get up each time so she didn't know I was there. If she had seen me, she would have started crying and it would have been hard to get her back down. I'm glad she chose to sleep because we both needed it! The lab folks came by at 5:30 a.m. to draw blood. They always, always have to stick her at least twice b/c her veins are hard to get. It is hard to watch. Needless to say, that woke her up and we have been up and going since. The neurosurgery resident rounded early and told me that Lia Kate looks great, is doing everything she should be doing neurologically, and all she needs to do is drink more fluids. They finally took her off IV fluids to encourage her to drink more. Still waiting for the main doc to round and see what he says about discharge. I'm guessing we'll be here at least another night. The main reason is that they want to make sure no cerebrospinal fluid is leaking from the incision. The nurses say she looks too good to stay another night but we'll see what the surgeon says.

One interesting thing about her surgery that I didn't mention yesterday is that the doc said he will see 200 open myelomeningoceles for every 1 cervical meningocele. That means her case falls somewhere in the .5% chance range for occurrence. For some reason, our family is really good at hitting the one percents (my placental abruption, Britton's good outcome after anoxic birth injury, etc.) Lia Kate is falling right in line. I believe the doc said he'll only see a handful of these in his career. And her case presented differently than a typical cervical meningocele. Anyway, we are glad it's behind us and glad the doctor has given her such an excellent prognosis. We feel very blessed over this outcome.

Happy girl this morning! She is smiling, laughing, talking, eating, and drinking. They took her off IV fluids and disconnected her pulse ox, so she is mobile. She's been walking around and playing all morning.

Danny found a new way to dispose of a dirty diaper in a pinch -- stick it in a hospital glove and tie it up!

Lia Kate had a great night here at the hospital. She and I both got more sleep than I thought we would. I was able to get her to sleep in the crib (at home she sleeps in our bed) and even though she was woken up many times in the night for meds and vital checks, she went back to sleep every time. Didn't even whimper. I think part of the reason is that I didn't get up each time so she didn't know I was there. If she had seen me, she would have started crying and it would have been hard to get her back down. I'm glad she chose to sleep because we both needed it! The lab folks came by at 5:30 a.m. to draw blood. They always, always have to stick her at least twice b/c her veins are hard to get. It is hard to watch. Needless to say, that woke her up and we have been up and going since. The neurosurgery resident rounded early and told me that Lia Kate looks great, is doing everything she should be doing neurologically, and all she needs to do is drink more fluids. They finally took her off IV fluids to encourage her to drink more. Still waiting for the main doc to round and see what he says about discharge. I'm guessing we'll be here at least another night. The main reason is that they want to make sure no cerebrospinal fluid is leaking from the incision. The nurses say she looks too good to stay another night but we'll see what the surgeon says.

One interesting thing about her surgery that I didn't mention yesterday is that the doc said he will see 200 open myelomeningoceles for every 1 cervical meningocele. That means her case falls somewhere in the .5% chance range for occurrence. For some reason, our family is really good at hitting the one percents (my placental abruption, Britton's good outcome after anoxic birth injury, etc.) Lia Kate is falling right in line. I believe the doc said he'll only see a handful of these in his career. And her case presented differently than a typical cervical meningocele. Anyway, we are glad it's behind us and glad the doctor has given her such an excellent prognosis. We feel very blessed over this outcome.

Happy girl this morning! She is smiling, laughing, talking, eating, and drinking. They took her off IV fluids and disconnected her pulse ox, so she is mobile. She's been walking around and playing all morning.

Danny found a new way to dispose of a dirty diaper in a pinch -- stick it in a hospital glove and tie it up!

Virginia Grace Finally Coming Home!

My friend Kelley finally left today for China to bring home her daughter Virginia Grace! Kelley and I have been going through this adoption journey together. We even were matched with our girls just two days apart, which means they have been waiting for nearly 6 months to bring their daughter home. And in just a few short hours they will be boarding a plane bound for China. You can follow along by reading their blog which they'll be updating daily. I am so excited about their journey and can't wait for Grace to get home so that she and Lia Kate can begin being best friends!

Surgery Day

9:15 p.m.:

Lia Kate is sound asleep in the crib right now and I am headed there soon as we are sure to have a long night of interrupted sleep ahead. We are so glad for this day to be over but also so grateful for how well things went for our little girl did today! More tomorrow ...

7:30 p.m.:

Lia Kate finally woke up from all the anesthesia and ate two yogurts, talked a little, made silly faces, and did the hand motions to Itsy Bitsy Spider and Twinkle, Twinkle before falling back asleep. Her fever is down and her cute little personality is starting to come back. Would you believe that my cousin (the only one I have in Birmingham) and a friend are both working tonight and tomorrow night on the same floor that we are on?!? Our friend is our nurse tonight and we have had fun catching up with both of them.

6:00 p.m.:

Britton and GiGi came by earlier to say hi. Britton came over and rubbed Lia Kate's leg and was totally fascinated by the red light of the pulse ox on her toe.

3:44 p.m:

We have been in our room since just after noon. She's been sleeping most of the time and is now running a 102 fever which they are keeping an eye on. She has already taken a small bottle pedialyte but is mostly just sleeping the day away. Britton should be coming up soon to check on his lil' sis.

11:54 a.m:

We are now back in the recovery room. Lia Kate is sleeping in Emily's arms. She is doing well...the nurse said she was feisty, but she's just sweetly sleeping now. Moving to a room soon.

11:30 a.m.:

Still waiting to see her. She is still in recovery and we haven't heard anything since we spoke to the doctor. I think when she is out of recovery, they will officially admit her and move us to a room.

10:50 a.m.:

Surgery is over and it was a success! We just spoke with the doctor. True to his word the surgery only took about 90 minutes. He did end up going into the dural sac to look for tethering bands and he did find some bands that could have resulted in a tethered spine down the road. He released them and told us that by doing that he pretty much eliminated her risk for a tethered spinal cord down the road. The biggest risk at this point is that she will develop hydrocephalus (fluid on the brain). This happens when the cerebrospinal fluid is altered, which it was when the doctor opened up the dural sac. However, he said the opening was so small that her risk of hydrocephalus is very small. He said we'll be here in the hospital for at least a couple of days and we'll watch for symptoms of it. He said her prognosis is excellent and that this will be just a blip on the radar before long. We will probably follow up with him every couple of years, but that she will not need lifelong follow-up. We are very encouraged and thankful for this great doctor and wonderful outcome. Praise God from whom all blessings flow!

10:05 a.m.:

It's been an hour and 15 minutes or so now. No word, but we've had friends here this morning helping us pass the time. When we talked to the doctor this morning he guesstimated that we'd be "seeing his smiling face after about 90 minutes." Hoping that's the case!

9:00 a.m.:

Just got a call from the nurse. She said they just started on the surgery about 10 minutes ago. She said we would only hear an update if it took more than 2 hours, so I am hoping that no news is good news.

8:00 a.m.:

They just took Lia Kate back for surgery. The surgery should take from 1 to 2 hours. After surgery, she will be admitted to a room. Will update here as the day unfolds. Please pray that the surgery goes well.

Lia Kate's Surgery on Tuesday

Lia Kate will be having surgery on Tuesday, April 6, at 8 a.m. We would love your prayers for a good outcome. When we first decided to adopt Lia Kate, we knew this surgery would happen soon after coming home. And, the day has finally come. It's a little surreal.

Lia Kate had two medical special needs when we adopted her. The first is a VSD heart murmur. Now that we are home, we know it is very small (~2mm) and is "of no consequence." Looks like we'll just be following up with the cardiologist once a year to make sure the VSD is getting smaller and smaller.

Her second special need is a pedunculated skin tag on her neck. It is about the size of half of my pinky finger. The problem is that it is midline (above her spine). Because of this, we have been seeing a neurosurgeon. Apparently, any midline skin issue (birthmark, hemangioma, skin tag, etc.) can be related to spinal abnormalities. So, he sent us for an MRI so that we could see what exactly was going on beneath the skin tag. We found out that the skin tag has a little stalk that goes into her skin but stops short of the spinal column. This is a good thing. However, the doctors are guessing that it used to have a connection with the spinal column (in her case this is called a cervical meningocele), but that it closed off and healed up. We are thankful that the MRI showed that her spinal cord looked perfect and there is no spinal fluid or nerve tissue present in the skin tag. The doctor said this is about the best case scenario we could have. Thankfully, this skin tag is located on the neck (cervical area) versus lower on the back, which could be associated with a lot more problems/risks. We are so thankful that Lia Kate has no deficits related to neural tube defects such as meningoceles. She is so bright and is perfectly on target for gross and fine motor skills.

So, at 8 a.m. tomorrow, the neurosurgeon will be going in to remove the skin tag and the stalk beneath it. The doctor is pretty confident that he will not have to go into the dural sac (this is what houses the spinal fluid and protects the cord). But it's always possible that once he opens her up, he will see that the stalk is more than skin deep. From my conversation with him, he is optimistic that it will be a straightforward, simple surgery. We are praying and hoping this is the case. If he does go into the dural sac, Lia Kate will be in the hospital for 4 or 5 days to make sure no spinal fluid leaks. If he does not have to open the dural sac, we will probably spend at least one night in the hospital. Please pray for her safety tomorrow morning and that this surgery will, indeed, be as simple and straightforward as the doctor expects.

Overall, we feel very thankful and optimistic about tomorrow. But would love your prayers for our little girl. I will be updating this blog tomorrow as the day unfolds. Thank you in advance for your prayers!

Easter Sneak Peek

Lots more pictures from Easter weekend coming!