Wednesday, June 30, 2010

Lucey's Surgery

Lucey has discovered Leg*s...It looks like she is following in her brothers' footsteps. Andrew helped Lucey put this little ice cream shop together. Lucey and I have put several creations together 0ver the past few days. A nice quiet activity for a girl who is recovering.
Lucey's surgery: (I'll make this simple)
She had a macrostomia repair. The corner of her mouth did not form. It happens rarely. It has also been called a lateral facial cleft. The corner of the mouth is made up of skin, several different muscles and mucosal lining. It's not just a cosmetic issue--for some, eating can be difficult. Speech is impaired because not all the sounds can be formed when facial muscle is not in tact. For babies, sucking is not easy. Lucey had some issues although she handled it very well with coping skills she developed and some reminders from us. The procedure took 2 hours. It was not a simple surgery and that area of the mouth is so sensitive. The inside of her mouth has so many stitches and the outside has stitches, glue and then the strips are glued on to keep the repair together. Two days ago she was doing something....I'm not sure what....we were in the car and when I went to get her out, she had blood all over her face, hands and fingernails. I ran her into the store bathroom (not the best sanitary environment but what's a mom to do?) and cleaned her up and got a close up of what was going on. My heart sank. It looked red and swollen. I washed it well when we got home, trimmed the strips since they were hanging there and she knows not to touch it anymore. I took her to our pediatrician and she thought she looked fine. She took a culture of it to see if there was in bacteria growing. I feel so much better. No signs of infection!
The second procedure was the removal of her ear remnant. This also took two hours. As I described before...there was a lot of cartilage under her skin. Our surgeon talked to us about moving her remnant, in stages, up to the proper location of where her ear should have been to use that tissue in an ear reconstruction later. I'm not sure that would have been possible. It would have been another 4 surgeries and it was a gamble that the tissue would be usable in the end. We didn't really consider it at all. She needs so much other surgery so we made a prayerful decision for Lucey...later, a prosthetic.
Lucey's surgeon surprised us....he told us how he over lapped muscle and tissue when he took off the ear remnant to "bulk up" her face a little. A little extra facial reconstruction. It really does look great. He knew we were concerned that the ear remnant removal would make her indented face stand out more. He was concerned about this too and talked to us at length about it. We are so pleased with her far. (Hoping she didn't tear her lip a few days ago....we will know more in two weeks when we go back for her post op visit).
Lucey's surgery was quite extensive but, you would never know it by the way she was running around just 48 hours later! Amazing. She is still running around her and I have to remind her to slow down.
Those of you who are going through something similar with your kiddo, I'd be happy to answer any questions you have. I know my knowledge is limited but I will do my best to share what we know.

Monday, June 28, 2010

My Wonder Girl...

Spunky as ever! Lucey's hair sticks to her bandages so we decided to do pony tails. I bought this nifty Popsicle holder for little hands and it contains the drips. I love it! Keeps her neat and tidy.

This picture was taken before church yesterday.

She was serving the boys--"Lunch"

It was a beautiful evening yesterday so we got out the sidewalk chalk.

She had so much fun and so did I. The hospital orders said to play quietly for the next two weeks while her face heals...she is, kind of. She has been pretty energetic. I have had to ask her to settle down a bit. Thank goodness she is, by nature, pretty calm.

So...continuing to do well and healing beautiful.

Saturday, June 26, 2010

Post Op and Doing Great!

The morning of the surgery could not have gone any smoother. Lucey could not eat anything but could drink until 9:00 a.m. She drank some juice and watched episodes of D*ra on my computer. I wanted to keep her mind off of breakfast. She never asked for anything to eat. That was amazing. After 9:00 we casually took her cup away. Only once did she ask for a juice and I distracted her and then she was fine. (Linda, unfortunately she did not go into surgery until 1:15. All the prayers helped us get through such a long time without eating or drinking)

At the hospital she started getting irritable. I do notice when Lucey doesn't eat regularly, she gets super crabby and a bit anxious. Then coupled with a hospital environment she was not so happy.

She was getting pretty fussy.

The fish tank with all the pretty fish was a great distraction.

We were moved to a private room where we could cuddle with Lucey. Only Daddy could console her. He had the special touch this morning.

She drank some medicine to make her relax and we moved her into her scrubs. We had such a sweet staff of people working with us. Everyone so kind and loving to Lucey.

She was fine to go off to the OR without us.

She was waving to the staff on her way out. These our her two anesthesiologists and her nurse. She had three doctors in there too. Dr. Kane spent a lot of time with us before they took her back. He made us feel completely at ease with his plan for her. The surgery took close to 4 hours. We stayed in our private room with the hospital phone. They called us from the OR several times letting us know how she was doing. We found out she was difficult to intubate do to her internal anatomy...something we need to know for future surgeries. It's not uncommon for her type of syndrome.

We went to recovery right away where I held her while she was trying to wake up. We expected big bandages and a swollen face but to my amazement she looked so beautiful. I could tell the surgery went great. Dr. Kane was very pleased with how it went. We just needed to see some facial movement from her to see if her facial nerve was still functioning. Let me tell you...IT IS! Praise God...she is moving her face just great! All those beautiful expressions and of course her gorgeous smile.

We were moved to her room and Ron and I did a switch-a-roo after a few hours. Lucey's oxygen was at 91 so they gave her some and that brought it up to normal. My parents brought the boys to the hospital so they could see her. They were very concerned. Lucey was out of it for quite awhile so they could not really talk with her.

Then she woke up..... and boy was she cranky! The poor thing had to be hungry. We tried a few bites of jello and some apple juice. It did not sit well and came back up. Thank goodness Ron and I were both took two of us to changed her, her sheets and then she had to go potty. She was a limp noodle so getting her on the potty with her IV and the pole and all that she was hooked up to....the nurses were nice but not real helpful. I got in bed with her to help her relax. After a few hours we tried a slushy....juice and ice combination. She ate it all. About 30 min. all came back up! On her blanky, herself and all over me. Poor little thing. She was so upset, tired and in pain. And she had to go potty....we did the whole thing again....change her, me, the bed, and then off the the potty with all her paraphernalia.

Ron took a turn sleeping with her. It was not a restful sleep. We were up most of the night. They did not give Lucey her pain meds because they were concerned she would throw it up. She did not throw up any more after midnight.

In the morning she was very hungry so she ate a few bites of eggs and some yogurt. The staff came in, her Dr.'s stopped by and told us we could be discharged. Lucey wanted that IV out in a terrible way.

Her vitals look great.

We were doing everything to distract her. She was really crabby this morning.

At last....time to go. She loved the wagon ride.

Nana brought her the beautiful pop-up book. Lucey had fun with it at the hotel room.

Renee and Emma stopped by to check on us and brought Lucey some fun gifts.

Aunt Jennifer stopped by too--Thanks Jen!...there she is in the background. Lucey was able to take a 2 hour nap when we got back to the hotel but was still quite crabby when she woke up. The present really perked her up.

A friend to color with always helps. Emma was so sweet with her.
We picked up the boys yesterday afternoon from Nana and Papa's house. They had a great visit with their grandparents.

We stayed for a few hours and visited. We then headed to Aunt Jennifer and Uncle Rob's house to say hello and to see our cute little nephew. It had been almost 4 months and boys has he changed. Lucey and D. ran around together and played. We then headed home.
It took us a lot longer than usual since there was road construction. We did not get home until 11:30p.m. Lucey did fantastic. Kids bounce back so quickly. She slept well in the car.
Last night she had the best sleep yet. She did not get up until 7:00 this morning. We all needed that....I feel so much better today. I have really been dragging the last few days.
Lucey looks fantastic this morning....already healing and looking as beautiful as ever. I'll talk more about her actual surgery in my next post. It's really fascinating.

Friday, June 25, 2010

Lucey Is Doing Great!

Just a very quick update...Lucey is doing fantastic this morning. She looks great, she is eating and she is not in very much pain. She is taking a little Tylen*l and that's it. We are checking out of the hotel right now and will be on our road home soon. I will post again soon with all the details.

God is so very good....we feel so blessed.

Thank you for checking in with us and all of your prayers.

Beth and The Troops

Tuesday, June 22, 2010

A Safe Trip and Relaxing Evening

Our trip was safe and easy. The best kind. We visited with Mom and Dad for a few hours before saying good-bye to the boys and then heading off to our hotel in downtown St. Louis.

The hospital called to give us last minute information and instructions...

We check in at the hospital at 11:15 tomorrow morning. I would guess that Lucey's surgery will be around 1:00 p.m. She cannot eat after 5:00 a.m. tomorrow morning. Since Lucey does not always like to eat breakfast first thing in the morning and definitely not at 4:30 a.m. we opted to keep her up a little late this evening and give her a snack at 9:30. She cannot drink anything after 9:00 a.m. This may be a challenge. Poor thing....this is going to be hard.

Adam was packing for the trip and Lucey got a kick out of crawling into the suitcases and bag. She loved Adam toting her around in his bag.

We had such a relaxing evening...
Lucey and I eating in our hotel restaurant. The food was very good.

We opted to sit casually at the sitting area. Lucey could walk around and nibble. She loved the egg rolls.

Ron took Lucey for a short swim to relax her. They glided around the pool.

Lucey enjoys the water. We didn't let her get her head wet. We just didn't want to risk any kind of ear infection.

This is the view from the top floor pool area. You can see the Arch peeking out on the left side of the building. The view is wonderful. The hotel is really beautiful.
I need to get some rest...I'm tired.
We are feeling those prayers....thank you so much!
(I got a call while driving to St. Louis that the insurance co. finally had the referral for surgery as of about cutting it close)

We're Off To St. Louis

I have great news--The hole in Lucey's heart has closed! Yesterday, Lucey had an ECHO and and EKG and her heart looks great (Thank you Auntie M. for going with us, for all your prayers and encouragement...yesterday could not have gone any smoother) We are so thankful, God is good and we give Him all the glory. I was praying prayers of praise with my friend, Catherine on the phone yesterday. She said something that really touched my heart....A parallel to being an orphaned child....a hole waiting to be filled...she's home with us, her forever family and her "hole" has been filled...her heart is whole. All the troops here have a heart so huge for Lucey, she gives us so much joy....

So here we are, in 10 min. heading to St. Louis for the first of many surgeries of her facial reconstruction. Just looking at her you would never know the major deformity underneath that bright, beautiful face you see when looking at her. It's truly amazing. She is missing so much of her upper and lower jaw that she will need bone grafting in a few years to create a jaw. She does not qualify for distraction. She does not have a mandibular joint. There is facial tissue missing as well.

Thank you for your prayers today as we travel and tomorrow as she has her surgery. I will try hard to post an update. I have no idea what to expect tomorrow. I have been encouraged by those of you who have shared your stories about your children who have gone through similar medical situations.

Tomorrow Lucey with have her lateral cleft lip repaired and her ear remnant removed. We are going the ear prosthetic route with Lucey. I'll explain more about that in another post.

I know I still have not shared the rest of our St. Louis visit from back in May...My friend's took care of me and I have some great photos I want to share....but the day at the hospital was difficult so I have been dragging my feet on revisiting that place in time.

Also, Christian has strep throat again. This is his third time in 8 weeks. We are concerned about him. He is a trooper. Please pray for his healing.

Thank you again for your prayers....
Much Love,

Monday, June 21, 2010

Father's Day 2010--Honoring our Hero!

We hope all the Father's out there had a wonderful Father's Day! We had a great day here with the troops. I really wanted Ron to sleep in for once. He works so hard during the week and many times he is working on the weekends too. On the weekends he usually jumps out of bed at Lucey's first call. Yesterday, I really wanted Ron to get some much needed rest.

I am not a huge breakfast in bed kind of girl but I knew Ron would just love it! I got the troops up and together we made Ron a fully loaded omelet, coffee cake, grapes and St*rbuck's pressed coffee.

We of course entertained him while he enjoyed every bite. We are a chatty bunch over here so there is never a lull in conversation and it's usually pretty silly.

We went to church at our normal time. It was a blessing for us--pastor lead everyone in prayer and we prayed for Lucey's upcoming surgery (Wednesday). This is Lucey's spot--her "time out" spot. She was being naughty after church.

Ron and The Troops!

Ron was playing with the neighborhood kids. I thought this scene was funny....Ron without kids and our neighbor, Mark, with out his Dad. Hmmmmm.......As it turned out, our boys were chasing each other around the park after a scuffle (playtime can get competetive with the twins) and Mark's Dad was working. So, Ron enjoyed playing with Mark.
Ron then enjoyed a game of street hockey. He was really getting into it.
Then, Ron and I took Lucey on a 2 mile power walk. It was nice to get my time in with the Man of Honor.

We grilled out and then had apple pie and ice-cream while Ron opened his cards and gifts. (All back in jammies and Lucey in bed)

The boys made some creative, heartfelt cards--they really warmed our hearts. I could see a tear or two in Ron's eyes. This is Christian.


Adam shaved for Ron without being told. That really made Ron happy. That was a nice gift.
Ron said he had a fantastic day--I loved hearing that. I really wanted his day to feel special.
I chatted with my Dad on Father's day. I'll be seeing my parents tomorrow and later in the summer we have a lunch date planned. I'm looking forward to our time together.