Good Night...

Does anyone else's Grandmother say, "good night a livin'?" Mine does and it cracks me up! What in the world does that mean? Anyways, our family had a good night. Darrell had gone home last night to see the little ones and catch up on sleep and tonight I got to do the same -although I haven't made it to bed just yet. I have sort of a caffeine high maybe more like a Judd and Caroline high. It was so great to hug and kiss on them and hear their silly laughs. They are doing great and have been so well loved on by family and friends that they may ask Grace to go back to the hospital more often!

Grace and Darrell also had a good night. She got to be on Radio Lollipop at the hospital. She won a coloring contest and so they announced her name over the radio and she is as proud as if she had won a Grammy! This morning she delayed her plans of doing all the things she had promised yesterday but by the end of the day - she came through and she got it done! Medically speaking she is doing amazingly well. The verdict on to what degree the surgery improved her speech is still out. We are beginning to notice changes already but the next few months and year will reveal the full benefits. All good stuff. I will try to give more detail on the procedure they did and why it was necessary in a post soon.

She is definitely more herself, playing and interacting. She was still fighting and protesting meds and trach care during the day but Darrell said she did well tonight. My prayer all day has been that we could get just one good experience to grow on with trach care and it sounds like tonight may have been just that! She gets so worked up about it that it becomes 20x's more traumatic than it should be. If she could just see it is easier when she cooperates our jobs would be so much easier. A pretty general parenting concept, I suppose!

There is a lot to do in prepartion for us coming home according to the hospital. They have to be sure we have the medical equipment for the trach, the supplies and also nursing services arranged before we can be released. D and I also have to pass our classes on trach CPR (which I hope to never use) and trach care. That one includes learning how to take it out and put a new one in - yikes! I fear this could be yet another fainting opportunity for me! D and I will be competing for teacher's pet so class should be fun!

Good Night a Livin', I just saw the clock! My concept of time is horrible! Tommorow is almost today - so good night and good day until next time! Bridget

Your NOT sick, so get out of bed!!!

That was sort of our tone for the day (after coffee and the earlier grumpy post that is). We needed a kick start and it came from our pediatrician this morning on rounds. She came in checked Grace out and told her she was healing great but she needed to do something with her messy hair! We talked about some ways to better manage her pain and still keep her progressing. Then she boldly told Grace in her very Dr Savrick way, "Grace, you are not sick and you need to get out of bed!" I just love her, she loves complicated kids! With that little phrase our day got momentum. This was not an unanimous vote - Grace has very strong objections but Darrell and I felt strongly that she needed to know she wasn't sick and the trach was just part of her for a while. We got her up, gave her a bath, put her in clothes rather than a hospital gown and told her we had lots to do today. She protested quiet loudly at first but she eventually started to get out of her patient role and be more Grace. The Grace she chose to be today was still a little extreme, at times, but overall a better day for her. She seems to be getting her confidence back and isn't as scared to do routine things. She still has a way to go but I think she is realizing she can still do all the things she did before she got the trach. In her mind and really in her recovery that is super important.

Recovery wise she is healing well. Dr Edmonds removed her sutures from the trach and on Wednesday will change the trach for the first time. She began drinking a little more and ate a few bites today, so that is progress. She's been telling us tomorrow she will do all the things we asked her to do today so evidently she has a big day planned. Darrell and I got our class times for Wed and Thurs to take our trach class and CPR class so it is possible we could get out of here this weekend. Yippee! I am sure missing the little ones!

I have had several people ask about how to post comments to the blog so I wanted to give some instructions. If you look on the left hand side of the blog there is a new section that hopefully gives clear instructions on how to leave a comment. We are so thankful to have so many sharing this journey with us. It is so amazing because it is a journey we did not want to go on and then we have all of you volunteering to go with us - it is just humbling! It has been such a blessing to hear from you and know that others are cheering on our sweet girl. She LOVES for us to read her messages and then she quotes them all through out the day! She has always been a high maintenance girl for one reason or another but it does her well to feel loved!

And on a random note- I am going to get a book tomorrow (for me) and am up for recommendations.
Bridget

Some days...

Some days are better than others and yesterday would go under the "others" type of days. It was rough and last night was really bumpy too. Grace is alert and aware of what is going on and she is not happy about it. She wants the trach "out" and she wants to go home! Yesterday was the first day she started complaining about pain. She says her mouth and neck hurt and she doesn't want anyone getting near either of them. There is a lot that goes on in the trach care and her unwillingness to let us get near her neck is creating some tense moments. She is really hesitant to do anything. We unhooked the monitors last night and carried her around the floor just to get her out of bed. She is just starting to drink a little and today is the day we have to eat something. If not, we will have to address the calorie situation. We have lots on our to do list today and no one is really in a good mood! I asked the nurse if I could get an IV with a caffeine drip and she said she didn't have orders for that so......I will address that with the Dr's this morning when they make rounds. I know there is more to update but I need coffee before I can remember anything else.

Welcome to GraceLand...

We moved to a room from the POD and it is so much quieter and roomier! Grace is still doing well and is becoming more active. She is turning on her side and sitting herself up at times. She has arm braces on her arms to keep her from pulling at the trach or sticking things in her mouth but we have been able to take them off for little blocks of time. She isn't messing with much other than the controls on the bed. She likes that she can raise her legs and back up and down. It is providing her entertainment. It is like a little roller coaster ride lying down. Speaking of laying down, I slept so good last night on our roll out bed. Darrell tended to Grace during the night and so he is sleeping now. We woke up this morning to graffiti on our dry erase boards (as seen in the picture), cards and pictures decorating the cabinets and stuffed animals atop of IV poles, and monitors. Darrell was bored during the night so he decided to spruce up the room! So thanks, daddy for making it as fun as possilbe to be here. Room 29 is nice and it's one stop closer to home! We are all missing the little ones!

Party Status...

The surgery party is still in full swing which is why I am writing this at Starbucks across the street in the middle of the day. Caffeine is a must for these sort of parties (thanks, Cassidy for my coffee). I wish I knew why hospitals make you so tired it is one of life's great mysteries. We are thankful to be out of ICU but our current set up is really similar and so we are hoping to more to a private room soon. We will still be in the PCU with all the monitoring but we will get a shower and couch of our own. Grace is more alert today and this afternoon we tried to substitute Tylenol with codeine for the morphine. I love that she is more alert, it is just hard to watch her be so scared. She doesn't seem to complain of anything hurting but she is really quiet and apprehensive and shakes her head "no" anytime walks in wearing scrubs. We keep telling her the worst is over and she will be ok; but, she isn't convinced of that just yet.

The exciting part of the party today (and I use the word party lightly) was that we gave her a bath in her bed and I was able to hold her for a few minutes. We also tried the plug on the trach and her oxygen levels didn't change so Praise God. I am not sure if they will try that with her sleeping yet but at least we know that her air way is clear enough for her to breathe on her own while awake and that is AWESOME. It is still too early to assess the speech benefits because of the swelling in the palate and the heavy secreations in the trach. How different her life will be when she can communicate clearly - as much as I want that I can barely wrap my mind around it!

So today has been forward progress. Our specific prayer request would be that she would not be so afraid and that she would be accepting of the trach!!! We also would ask that her speech show the dramatic improvement that this reconstruction allows.

Today we started learning a bit about how to care for the trach hands on and that will continue on for the coming week. We have a few classes and test we as parents must pass before we can go home with her. So we all have our work cut out for us.

Grace woke up this morning asking for "the Boy", aka Judd. We told was with with Aunt Sheri, Uncle Troy and the boys and so she settled for just calling him. Caroline is with the Weavers this weekend and enjoying being the only princess, I am sure. Judd and Caroline are doing great and having so much fun. We are so thankful to all of you who are walking throught this with us in so many ways. Instead of wishing to win the lottery everyone should wish to have our family and friends. Your love, support and encouragement make our hearts richer! That reminds me, my hubby said, "bring me back some bold coffee, sweetHEART". So I need to get right on that!

Movin' on up...

Have you ever wanted to just fast forward your life? I know that I have - today we sort of got a little fast forward button on our stay here in the hospital. We moved from ICU to a progressive care unit! How exciting is that? Our quoted 5-7 days changed to 24 hours! We are still in a closely monitored unit but it is certainly progress and a much less intense environment. She is off oxygen and doing well with the trach open. We haven't yet tried to cap the trach because she is still somewhat sedated and still having to be suctioned for the secretions. She has watched some tv and been in and out today. We even got a glimpse of a smile from her when we were reading her comments from the blog. It has been a great day!

Last night we took turns sitting at her bedside. It is SO crazy how your sense of time is left at the door when you walk into these walls. My sense of time isn't so good anywhere so here I sort of enjoy not being the only one who is clueless to the clock. However, I did watch the clock to be sure and make the "Midnight Madness" sale in the gift shop last night. It was from 11pm -2am, there was some cute stuff and I enjoyed a good bit of retail therapy in my outing! The sleeping situatuion was hilarious! Let me just say I love my hubby and now I have even more reason to love and appreciate him - he doesn't snore! I realized last night that not all spouses are so fortunate. I had the first shift last night at the bed side - after my shopping trip- and there is only a chair to sit in. So knowing that I didn't expect any sleep but the mom in the pod next to us I guess had a more comfortable chair, perhaps one that reclined, and she was in a deep sleep! One that caused her to snore REALLY loud as if she was getting the best nights sleep ever. I am sure she needed it and so I am happy for her but I did think perhaps I was on candid camera and they had a fake snorer just to see my reaction! When Darrell and I switched shifts early this morning I warned him but he failed to warn me about the sounds I would encounter in the family room! So the family room is private for the PICU parents at bedtime - there are recliners and they provide pillows, blankets even muffins and coffee when you wake up. You sort of have a slumber party with 20 or so other parents. As with all slumber parties you do wake up really tired from the lack of sleep. Only at this party it wasn't all the chit chat that keep me from falling asleep - it was all the snoring! There was all kinds of snoring patterns going on. I am sure that a few had sleep apnea - or a grizzly bear was snoozing among us! Tonight will be different for us but knowing that room is full every night of the week, of the month, of the year is a humbling. Not because of all the snoring you must endure during your stay but because you know how your heart hurts for your child as you realize all you can do is love them through it. You share that with every parent no matter how different you may be outside in the world or how loud they snore. Here you are just a mommy or a daddy that want there baby to be safe, healthy, happy and loved! And as it should be - for we are all created equal!

Amazing Grace...and then all the details

When I found out I was pregnant with Grace I had just finished reading "In the Grip of Grace" by Max Lucado (a great read if your looking for a good book). I was so amazed with God's grace and just the whole concept of grace that it led to Grace being named Grace. My mom has sang her the hymn Amazing Grace since she was a tiny baby and it is a favorite for Grace. She sings it often but her version goes like this, "Amazing ME, how sweet the sound..." and she sings it boldly. It sounds a bit self centered but considering her age I am sure that the Lord finds it precious. Today was a huge day for her and for our family and I believe that God will use it to make her stronger and bolder and that she will sing HIS songs with clarity in her speech and in her heart for all the days of her life! Gods grace and promises sustained us today. It was scary and it was gut wrenching but it was also awesome. I hope to look back on this day as one of the best days of our lives.......we certainly aren't there yet, but we know God is good and he is faithful.

Grace did wake up after surgery and we did get to hear her sweet voice - ok, it was sweet to hear but not really a sweet tone. Her comments were, "I want out" and "NO!!!". How awesome that we did get to see her open her eyes and interact with us. And then on top of that we heard her voice........that is huge being that she has a trach and it is open! All amazing stuff and better than we had expected. And for you girlies that were worried, NO, I did not faint when I saw the trach! Darrell was pleased! :)

We are in ICU now and she is out of it but not completely sedated in a paralyized state. She looks around every once in a while and even lifted her little hand to wave a few times. She is comfrotable and doing well. Thank you all for walking with us in faith and carrying us through this experience! Looking forward to what tomorrow may bring.....Bridget

Another quick surgery update....

Grace is out of surgery and in recovery. All went very well. The trach is in and she is using it with some applied oxygen but no ventillator which is great news. We are so thankful for a successful surgery and look forward to an equally succesful recovery. Praise God!

Quick Surgery Update....

We just met with the first surgeon and got a good report on his procedure. Gracie is still in the OR and they are beginning the next procedure. Will update as soon as we can.

Today is the day the Lord has made....

Today is the day the Lord has made we will rejoice and be glad in it! Today is also surgery day so that is a little more challenging to sing than on most days. We are here at Texas Children's and all checked in. We are passing the time by reading sweet email posted and she is loving it. It started off rough this morning with her crying that she didn't want to go to the doctor but stay home with the babies instead. But after going over a list of all the people who love her and will send her messages and she is much better now. Judd had a hard time this morning, he wanted to come so that was a bit heart breaking to leave him and as for Caroline we didn't wake her I couldn't bear another crying baby this morning! They all know we love them and that mommies and daddies always come back - so for now, we will just go with that! We passed our assesment this morning so now we just wait for our name to be called and off we go! Lord be with us!

Twas the night before...

Wow what a day! It has been emotional. I sort of feel like a storm is in the forecast and it is going to have a direct hit on my family. As much as we would love to avoid the storm we are just bracing for it and seeking shelter. Let me just say we have great and precious shelter and amazingly strong and generous support! Tonight our family was lifted up in prayer in the most beautiful and kind way. We were honored to get together with our church family and pray for Grace but I am not sure there are words to describe the awesomeness of love and prayers we received tonight. It was humbling, incredibly encouraging and as close to heavenly as it gets on this earth. My heart was not in a good place this morning but tonight I will rest in the assurance that my sweet girl is covered in prayer down to every last detail! There is nothing more we could want!

As for the honoree at the big on line surgery party - She enjoyed some time at home playing with Judd and Caroline today. Tonight she had Katie (her cousin) spend the night. Katie read her the entire school yearbook - her favorite book - more than a few times. She knows everyones name and which teacher they had last year. She was a happy little girl who I think feels really loved! Sleep tight sweet girl tomorrow is a big day for you!

Get ready it's a big week...

For our family this is a big week! For Grace this is one of the biggest in her life. She is having her "big" surgery Thursday. She has had multiple surgeries in the past but this one is big for several reasons. If successful, this will improve the intelligibility of her speech where she can communicate with the average Joe. As it is now, although she has great things to say, we are really the only ones who understand what it is she is saying. I love that Judd and Caroline can understand her just as well as we can and have never asked why her words sound so different. We did our pre-op appointments yesterday and have "the plan" for what to expect but also know to expect the unexpected. Surgery is planned for Thursday morning at 9:00 will take 3 to 3 1/2 hours. They will do the trach first and then the flap and she will be in ICU 5-7 days heavily sedated. Once they wake her, we will move to the progressive care unit and there we will begin learning all the care and things that go with the trach. Once we are in that unit she will be alert and in a more private room. Our stay in that unit will be about 7 days. We are planning on our little "vacation at TCH" to be 14 days. I think by the time we get back I will even miss doing laundry which I currently despise!

This is a good thing for Grace and being objective we know that but our hearts are heavy and unsettled. Not the way I wish we felt but it is and so it goes...

An American Girl....

My little American Girl got to go to the American Girl store in Dallas! She LOVED it! We evacuated to Dallas during Ike and decided to vacation while we were there. Grace has been wanting to go to the American Gril store for her 9th Birthday (not sure why 9th since she will be celebrating her 8th in November)ever since she saw the Jon and Kate Plus 8 episode where they went. She was so excited. Thanks to Cheri I had a doll to give her and we got a little shirt for her and her doll there. We also got to sit at the desert bar and have sodas and cookies. Grace was so proud. She decided to name her doll Annie because she has red hair. My childhood friend, Debbie, went with us and it was really neat to have someone that I played dolls with sitting with me, my little girl and her doll. It was a great experience and I hope we get to go again one day.