Tuesday, April 28, 2009

It's a good thing....

we are finished with visits from the social worker. No too sure how this method for securing Millie into her favorite "big girl" chair would go over.

But as you can plainly see, she's THRILLED to be using it.
So what's a mother to do when she just wants to make her baby girl smile a little bit???
You do what I do and get out all of your belts and strap the little monkey in. It was a delightful dinner with her at the table in her own chair and not the wheel chair. She even feed herself for the most part!
It was a banner day for Millie Moo!

Monday, April 27, 2009

Spicaville~Day 13

So here we are, 13 days in Spicaville and this is what I know:
1) Millie is losing weight. She weighs 30 pounds WITH the cast and she weighed 28 pounds at her 3 year appointment on 3/25/08. You can't tell this mother that cast only weighs 2 pounds~no sirree!
2) Can't get her outside in hot weather, which we have had in the 'Nati over the weekend. She gets way too hot and sweats way too much! I'm praying the weather cools off and we aren't struggling with the "I wanna go outside" tantrums.
3) Bathing and hair washing isn't so bad. We seem to have it down to a nice routine. Her cast is staying clean and dry~YOORAH!
4) Millies appetite is way off (see #1). We were warned that she would need to eat frequent, small meals. I could understand that if the cast was tight, but I can fit hand hands all the way through the cast now. So, I know it is not too tight. Looks like I'm going to have to start finding some high calorie things for her to ear~Lucky Girl!
5) She's sitting up straighter in the wheelchair which makes it easier to put her at the regular kitchen table. I have her strapped in with bright green luggage straps (thanks Joan!). She looks very colorful!
6) We are off the meds except for a little bit of Tylenol when she goes to bed at night. She's sleeping very well too~for that I am very thankful!
7) Millie's frustration level gets really bad when other kids are running around. This makes for difficult socializing with Elise and her friends. Still trying to sort that issue out.
8) Finally, I'd like to say we have a nice rhythm going here but the second I do that, it will all fall apart. So for now I will say we are doing pretty well.

Thanks to all my friends that are feeding us! It really does help~you just can't imagine how much I appreciate it.

Blowing bubbles with Baba

The Sweaty, Outdoor look


This girl LOVES water way too much!



Enjoying the deck with Mama



Enjoying a "tea party" at the kitchen table


Monday, April 20, 2009

Spicaville~Day 6

It's our second full day at home, out of the mother's womb, if you will. Coming home is a horse of a different color when it comes for caring for a child that is spica cast bound. Fortunately, we have a wheelchair that we can use and it has been awesome for moving her around the first floor. Second floor, if rather challenging. Adaptability will be the key over the next six weeks.
On Sunday, we made the trip to Ikea in search of an adjustable height table so Millie can sit at something and play. I've seen where other families have made tables and things like that. But I just wasn't off for that. I know you're thinking, yeah, you just wanted to go to Ikea. I can't deny that. I LOVE IKEA! So we found a marvelous table and then I spotted the cutest sets of play dishes for the girls and I snatched those up. They love playing tea party and serving each other so I couldn't pass them up. Ikea tends to rotate their children's items and you never know if something will be there the next time you come through.
The table works great and Elise even got a hot pink chair that will roll up to the table too. Roll is the operative word right now. Elise wants to push Amelia while she's in the wheel chair. That would be fine if Elise could see over the top of the chair, but she tends to drift to one side or the other and I don't believe that Amelia really appreciates the constant jarring and whiplash that her sister is unknowingly inflicting upon her. Elise's chauffeur license has been revoked until a little more healing is done. But, Millie has decided that "she can do it" herself and pushes herself around in the wheelchair. Yep, not kidding, check out the "Smilebox", last page is a video. She was killin' me.
Millie did get sick last night right at bedtime and she spit up her medicine. I was hesitant to give her more and she went to bed without any. Big mistake!!!! When she woke up this morning, she was a pain and it took about 2 hours to get her settled back down. It's no fun catching up on the pain meds. That won't happen again. I'm happy to say that she's resting more comfortably now.
I had to go through the task of "petaling" the back of her cast. Petaling is lining the inside and the edges of the cast with waterproof tape for protection. It was impossible to get to certain areas while she was in the hospital because she was so very swollen. Needless to say, when I put her on her bell, I was able to put my hand almost the entire way into the cast~that's how swollen she was. Her skin was a little icky so I left her resting there for awhile to "air things out" and then I lined it with tape. The meds had kicked in so she rested comfortably for about an hour on her belly. I have to admit, the sucker bribe helped also.
Tucker has moved his PS3 to the family room while I was gone. He likes the picture better on the new TV~gee~ya think???? I see more of him now than I ever have. He is no longer a cellar dweller. His skin doesn't have the pale hue that I'm used to seeing. I guess it's from all the sunlight he's now getting. He has also claimed the bean bag chair that Steve and Elise got for Amelia~again, check out the Smilebox.

Saturday, April 18, 2009

The real test....

As I enjoy a most beautiful glass of "Four Sisters" in the kitchen of my home, I gaze upon my two beautiful daughters as they compete for attention and realize the real test is now beginning. Gone is the safety and security of the hospital womb~where our only requirement was to be available for the doctors, therapists and nurses whenever they would call. Life has kicked back in and all that entails.

The ride home was uneventful except for the pit stop at the local Walgreen's to be sure we had pain meds for the 6 hour drive home. Pain management is the key right now and Amelia is scheduled for pain meds every 4 hours. She got a dose right before we left so I knew that I needed to give her another dose sometime during the drive home. The nurses told me that I could move it out to six hours, but I respectfully declined that offer and said I preferred the four hour interval. After standing around for about 45 minutes in St. Louis Walgreen's, we hit the road.

Millie was a champ and even slept for over two hours, a first for her in the car at anytime during any trip. I finally reached back to make sure she was still breathing. Upon our arrival, Elise glanced up from her bowl of ice cream and just glanced in my direction. She then proceeded to devour her before dinner treat. No hi, no nothing! Can you feel what I'm thinking!?!?

Then the competition began....grabbing of the toys and no sharing of new toys...blah blah blah. I bring in the wheelchair and Elise thinks she is going to push it around the house like she does Mamaw's wheelchair. Chaos reigns my friends. I was thankful the bottle had a screw on top and I didn't have to mess with a cork!

I finally got Millie settled in her new, red bean bag and she sat there for a bit. She eventually asked for the wheelchair and I think she prefers the height it puts her at. Giggsey was licking her toes and I don't think she cared for that. Again, chaos!

There were gifts from family and friends and lots of silliness going on. But we are finally settling down and thinking of heading to bed.


Please continue to pray for our adjustment at home. It will be so different and a challenge, for that I am sure. Millie continues to be very pleasant and amiable about her position or lack there of. I just pray that continues as her sister taunts her in that ever so passive aggressive way that she has mastered at the age of five.

Let the test begin.....I'm off to the wine cave!

Bustin' Out

WE'RE OUTTA HERE! That's right, we have officially been released. Millie slept like a champ. Wish I could say the same. All those stinkin' alarms on the probes that are attached to her kept going off all night. The nurse finally took pity and removed the IV~thank you God! Millie is ready to roll. She's had her hair washed and been bathed for as much as she can be. She's done her bathroom business, much to every one's delight and surprise and now she awaits her chariot. It should be arriving shortly.
Next Stop~the 'Nati. Where I hope and pray there is a lovely bottle of "Four Sisters" Chardonnay awaiting this happy mother of four!
Our God is awesome! I Praise His Name for allowing me the privilege of mothering these children. I Praise Him for the gift of knowledge that He has blessed the doctors at SLC. I Praise Him for the gift of compassion and caring He has blessed the nurses and caregivers at SLC. But mostly I Praise Him for you, my family and friends for your gifts of love, prayer and support during this time. The next six weeks will be interesting, but I'm more confident than every it will go fast and Millie will heal just fine.
C U soon!

Friday, April 17, 2009

Last night in St. Louie?????

It was positively GORGEOUS in St. Louis today. I was chompin' at the bit to get outside. So as soon as Millie had her breakfast and breathing treatment, we loaded up and moved 'em out.

Transferring her to the wheelchair is a bit of a challenge but not too terribly difficult. She's still rather light~relatively speaking, so moving her isn't too bad. She's just very bulky! The biggest thing is the element of fear that crosses her face whenever I pick her up. I know this will pass as she heals more, but it still is something we have to be sensitive about.

As you can see the pictures, it was sunny on the 8th floor rooftop garden. But was it glorious, you betcha! The spring flowers were in full bloom and the air was so warm. I could have sat for hours in the swing, letting the sun warm my soul. I did pick Millie up and hold her for a bit in the swing. She was rather apprehensive, but she soon feel fast asleep as we gently swayed to and fro. It was so lovely.


The sun was so bright...

This is the swing....

After our little stroll, I headed over to Panera for a much craved sandwich and then we had ourselves a nice little nap. It's the first real nap either one of us have taken. I crawled into bed with her and we slept for almost two hours. It was bliss. I must have been tired because I don't normally sleep that close to anyone, let alone sleeping in a twin bed with a three year old in a spica cast. Millie clung to my arm the entire time.


As you can see from the photo, she's got her arms behind her head in total relaxation mode. She's back to her old self, chit chatting with everyone and singing her little songs. She even said she wanted to go home today.


Big, Cheesy Grin~A girl has to have her hairbow

We took an evening stroll around the hospital and visited the garden for another swing and headed to the ball roll machine by Dr. Dobbs office. It's just not a visit to SLC without a visit to the ball roll.
Pucker Up....



Evening in the Garden~Self-Portrait


The Ball Roll
Millie asked to go home today, so I know she's feeling better. We've stayed a bit longer than anticipated due to the fevers. But we've been 24 hours without one, so we are bustin' outta here in the morning. I'm not sure of our exact plans~travel could be precarious, so we could be slightly delayed. We'll determine that tomorrow. She is definitely feeling better, the swelling is down for the most part and only appears when she is in the wheelchair. I've had to ask for some manners because Miss Millie has gotten a little too used to being "served". I made her eat her own raisins today and she was mortified that I would even ask that of her. We shall see how long that attitude lasts once we're back in the 'Nati!
Thanks for all the healing prayers! Our Millie is a trooper! I can say "ours" because she belongs to all my prayer warriors out there too! Can't wait to get home. I've got the wheelchair, car seat , handicap permit and everything else that I think I'll need. Steve is gonna faint when he sees all this stuff.
Ruby slippers are on....{click, click}there's no place like home, there's no place like home

Oh where is my toothbrush????

Do you know the Veggie Tales song, "Where is my hairbrush?"? Well, Amelia has modified it to sing "toothbrush" instead of hairbrush. Yesterday was a day of searching for comfort and safety for Amelia. She clung to my finger almost constantly all afternoon. If someone walked into the room, she said, "hold my hand!!!". After awhile, I couldn't stand or stretch any longer for her to cling to my finger. She received a book yesterday afternoon and clung to that with one hand. After I brushed her teeth, she decided to cling to the toothbrush with the other. So she slept, all night I might add, holding a Diego book in one hand and a toothbrush in the other. Bizarro~that's all I can say.

As you can see, she's much perkier this morning. She had a great night, no fevers~Praise God! She's resting comfortably and for that I am thankful. The night nurses were amazing~didn't even hear them in the room. Maybe they read my blog~they knew my plans and decided to steer clear? Who knows! I don't care, it was bliss.

The doctors are still puzzled about the fevers since it is the only thing that keeps popping up. Her lungs are still clear, but she still gets the breathing treatments. We skipped the 4 a.m. treatment for obvious reasons. So we are due for another one very shortly. They may give her an antibiotic, but I hope not. Just praying the fever stays down.

Today's goal is to get her system moving...if you know what I mean. This will be problematic for Millie since she's potty trained and doesn't like going in her diaper. If she asked me once last night, she asked me 50 times if she could pee in her pants. Just imagine what's going through her mind to do the other. Poor little thing.
It's beautiful in St. Louie! We're heading to the 8th floor garden as soon as possible. I gotta get outside.






Thursday, April 16, 2009

Thursday evening

Another eventful and interesting day her in St. Louie! Fortunately, we don't have Nurse Cratchet tonight~good thing~I think I would have had words with her tonight. Or maybe I could take her down with a one-legged shot for (2)~put her in a cradle for some back points and then "pretend" I can't hold it and let her go, then I could throw her in a head & arm for another take down and pin her for the win! YEA! Or maybe not~maybe I could just ream her out, like I'm really good at!

Anyhoo, I'm back from my dream world now. We put Millie in a wheel chair today and she did great. But when we moved her back to the bed, all the swelling started up again~UGH! Poor little butterball! First the right side started to swell and then the left side followed. Then the fever started spiking again. But the good thing was that we had a visitor today, Nel the Dalmatian! Millie was thrilled. She kept yelling, "I like Giggsey!" Well, Giggsey is our dog at home and Millie does love him to pieces. It was so lovely to see a dog. Nel was so docile, not like our Giggs! But nice just the same.


Millie and Nel

Nel is a Superstar!


The parade of doctors, nurses, therapists, etc started and didn't seem to stop until around 5:30 p.m. The epidural was removed around noon and she's been on oral pain meds since then. We're staying on top of the pain and keeping the meds in her. She's a little shaky, but all in all, she's doing pretty well. There was a pressure sore on her back and we have to make sure she stays off of that now~so she's always laying to one side.


The temp keeps spiking, but we don't know why. They took another chest x-ray and it looks the same as yesterday. It's too early for there to be an infection. So they are running some cultures and we will know more tomorrow. Breathing treatments have been moved to every six hours~thank goodness. At least I won't have to square off with a nurse tonight about getting a treatment at 2 in the morning :-).

We have a nice, new wheelchair that was delivered to our room today. These folks don't waste anytime. I did fold and request a handicap sticker for my car. I hate doing that, but I think I'm going to need it. So we are getting that too. The only piece of equipment we are waiting on is the car seat. I'm hoping to see that tomorrow.

She's resting nicely this evening. One more breathing treatment before lights out. She wants to be holding my hand constantly and it's a bit uncomfortable. So I've passed off a toothbrush to her to give my arm a bit of a break. Her eyes are almost closed and she is totally fighting going to sleep.


Praying that her night is restful since she will be off the epidural and praying we can keep the temperature down!
Zai Jian!

Day 3 morning update....

Last night was a little rough as you read from the previous post. Fortunately, the Valium calmed her down and she was able to rest.

The swelling was making it difficult for the Pain Management Team to see the epidural site. The following photos are of poor little Millie on her tummy, if you will, while they are trying to check the epidural.



With the aid of a few pillows, she's on her belly

Nurse Becky trying to calm Millie


Two sets of hands have to be better than one.

I had to stop a take a few photos of her in this position....it's not funny, but it is, if you know what I mean. I have affectionately dubbed the bar between her legs as "The St. Louis" arch. I asked them if they did them that way in St. Louis. It did solicit a bit of a smile from the doctor when I asked.
The Hilljacker in me almost came out last night with the evening nurse. We have had exceptional care and amazing nurses and staff...until last night. Last nights nurse kept taking her blanket away from her because she was running a fever...I thought my head was going to explode. Naturally, I promptly put the blanket right back where it belonged. Everyone knows how well I "filter" to begin with. I hope we don't have the same nurse tonight. If we do, I'll have to ask for another one. I don't really want a confrontation, but she drove me crazy...flipping on the lights in the middle of the night, moving way to slowly and taking the blanket away. Good Night Mrs. Calabash! The final straw was at 5 a.m. when I woke up to Millie saying, "I need my blankie!" I stumbled out of the incredibly comfortable bed ;-) only to find Amelia, lying in the bed, partially diapers, with no pillows to prop her up, no blankie to cling to and no nurse in site. YOWSA...you probably heard the sonic boom at your house. I determined that her bed pad was wet and needed to be changed. So I took one out of the closet and proceeded to change the pad and put her diaper back on. Well, I guess the nurse was searching for a clean pad, but didn't even look in our closet to see if one was available. I politely informed her that I found it, along with several others, in the room linen closet :-). I don't know if she caught my sarcasm or not. But the mere fact that she didn't return to the room before shift change tells me she did.
Millie is still getting a breathing treatment every four hours for now. They make take another chest xray to see how her lungs look. But so far, so good!
The epidural will be turned off (but not removed) in a little bit and she will be going on oral pain meds. This will be the ultimate test. She has not complained one little bit about pain up to this point.

Breakfast was a little better and she had some milk too. The swelling is down dramatically today, but the cast is still tight. Dr. Dobbs nurse, Kristina and his office assistant, Mary stopped by. I love these two woman, they are amazing and awesome! Kristina concurred that the cast is tight and said she will talk to Dr. Dobbs and bring him back up today. Like I said, they are amazing.
The wheelchair and car seat are being worked on for the trip home. I didn't realize they would give us a wheelchair to use. I'm pretty excited about that! I've worried a bit about how to move her about the house. So, lots of prayers are being answered!
Good morning! I'm less puffy today!
There's that beautiful smile that I so adore!
Bubbles are being requested and who am I to deny that??? So we're off for now. I'm sure this evenings post will be interesting since we will be adjusting to new pain meds.

Wednesday, April 15, 2009

Evening update...

So this afternoon and tonight has been quite a bit more eventful.

Amelia ended up getting a blood transfusion. We knew this could be a possibility, but was hoping it would not happen. But her counts were low, she was still running a temp and she's swollen and look like a Sumo wrestler. Her eyes are mere slits in her face :-). We watched a movie together and she liked that. I wish I could hold her but it's rather awkward right now with the cast, tubing etc. Hopefully, they'll remove some things tomorrow and we can get a little closer.

The epidural is hidden under her cast which is very tight from the swelling. The pain management team is having a time trying to determine if the site is o.k. since they can't see it because of the cast. Three doctors were in her room this evening around 6 p.m. trying to decide whether to cut the cast and relieve some of the pressure on her lungs so she could breath a bit easier. After much debate and determining the best places to cut the cast, one of the doctors left to get the cast saw. When he returned, he informed the other two doctors that he phoned Dr. Dobbs and Dobbs said NOT to cut the cast. The look on the other doctor's face was priceless, especially when he said, "You called Dobbs?" "I was just gonna cut the cast and take the heat." I could literally smell the testosterone flowing in the room. Hopefully the swelling will be down and we won't have to worry about cutting the cast. But watching that exchange was worth a thousand dollars~I was looking for the popcorn and considering following them down the hall and see what transpired between them~I'm thinking "Grey's Anatomy" type of sage. O.K., I watch too much TV~sorry!

Her behavior is rather erratic this evening. She is very jerky, probably from muscle spasms. Sleep is not coming easy for her either. I asked for something to relax her, but they have not brought her anything. She has also tried to pluck her IV out of her hand~that wasn't a pretty moment for either one of us.

Praying that tomorrow the swelling is down, the temp stays down and we can get off this floor. Leaving the floor means taking out the epidural~that means pain management will change. Lots to think about there. She wants me to sleep with her, but that's not possible right now. She breaks my heart when she says, "I get down now?"

Well, our good neighbor, Valium, is on the way. The nurse told me to get in bed with her until she settles down. This outta be cozy!!!! Wish I could send a pic, but it's just me and her!

Good night!

Good Morning~First Day Post Op

We had a restful night~gotta love that epidural!
She's having some breathing issues this morning~had a chest x-ray~lots of doctors checking on her. She had a breathing treatment, IPPB (intermittent positive pressure breathing), every four hours for 10 minutes. It's not her favorite thing, but she hangs tough.
There has been a parade of doctors in and out since about 6 a.m. A host of pediatricians stopped in and talked about her lungs. There is a place on the left side that appears to be either slightly collapsed or may be the beginnings of an pneumonia~hence the breathing treatments. We're praying it's neither and she's just struggling with the cast coming up so far on her rib cage.
She's eating o.k., but not much. I'm happy to report that there has been no "throw-up" since last night. All of her blankets are washed and back in use. But the craziest thing is the heated shower cap with shampoo in it that they gave me to wash the "ick" out of her hair. It was so cool. I put it on her head like a shower cap, scrubbed her hair around inside it, dried the hair and voila~the hair is clean. I can't tell you what a relief it was. All I could imagine was smelling barf in her hair all week~yeh, that just wasn't gonna work for me. It really is amazing the things they have available to use today. I wouldn't mind having a few of those shower caps for when I'm camping~don't suppose I could get any of those at Bass Pro or REI do you???? Then there's how much do those things really cost~I'll be checking the hospital bill and let you know.
She's still pretty swollen, but we've moved her around today. I even put her in a wheel chair and pushed her around the hall. We were not permitted to leave the floor since she still has the epidural. Which was a pity since it's beautiful here today. Hopefully, we'll hit the garden tomorrow sometime. She's resting over on her side right now and hopefully she'll blow some bubbles this afternoon. Right now we have her propped up on her side and she's watching "The Little Mermaid".
I'm hoping she'll nap a little and so will I. Seems like we've been going since 6 a.m., oh yeah, we have been. I also fell victim to the gift shoppe balloon trap~yep, I grabbed the Dora balloon and when I went to pay for it my eyes fell out of my head when she said $10~YOWSA! Thank you please, may I have another???? But she loves the balloon and holds on to it whenever I will let her.
Ronald McDonald House has a very nice facility on the 5th floor with food, lounge chairs, computers, showers and washers/dryers. I stopped by but ended up using the hospital laundry to wash the blankets. It's very nice up there though.
We're hanging tough. Thanks for the prayers. She doesn't complain at all. Her only issue is when we move the bed, it tends to scare her and winces a little. But she never says she hurts.

Tuesday, April 14, 2009

Post surgery update....

We're in our room and settling in. I have my slippers on and I'm all "connected". Here's what the doctor told me after the surgery:


"Recovery room ~ listening to the IPod"
"The Wiggles are the artists of choice"

Dr. Dobbs only performed the femoral osteotomies. He was so pleased with the position of the femur in the hip socket, that he didn't feel she needed the pelvic osteotomy at this point in time. There was not a great deal of blood loss so she did not need a transfusion. They will continue to monitor her blood counts in case that changes. So, the entire procedure went very well.

When I was heading into recovery to see her, they were coming after me. I guess she was having a bit of a meltdown and wanted her mama! Go figure~bless her heart. I quickly put the IPod earphones in and she quietly listened to The Wiggles. Then she wanted me to take her IV out of her hands and "get down".

They quickly moved her into a room, by herself~hoorah! I don't have a photo of the cast yet. I'll get that tomorrow~but it is purple.


I have her all snuggled in with her favorite blankets and big ole Dora balloon. She's resting very comfortably with her epidural and really only wants the IVs out.

Right now, she's watching "The Jungle Book" and eating some dinner. She's had a Popsicle and some soda. We will see how dinner goes.



Last, but not least, Steve and Elise are headed back to the 'Nati. Elise decided she needed to relax and watch TV just like Amelia was doing...like I said, she doesn't share the throne very well. Steve just phoned me a bit ago and said Elise was "out like a light".
Thank you for lifting us up. Tomorrow is cast care training. That should be a barrel of fun!
Until tomorrow~signing off from St. Louis~

Waiting.....

"Getting her arm squeezed"


"In her hospital gown"

We arrived at the hospital at around 5:45 a.m. and started the check in process. We have our own, personal waiting room within the surgery waiting arrive. We can close our door and shut out the world, it's rather nice. They called us to the back at around 6 a.m. and began that process. We waited about another hour, talked to anaesthesiology and decided on an epidural for pain management.
The girls played around in the play room~Amelia was way too cute in her too-big hospital PJs.
Watching TV while waiting for the doctor
Hanging out in the playroom while waiting...
"Once last joy ride"
Drs. Wells working on patient Wells
Mom...getting the surgery details from the doctor
Finally, we talked to Dr. Dobbs at around 7:15, right after Amelia got the Versit (sp???). He explained that he will be doing the femoral osteotomies and then check to see if she will need the pelvic osteotomies. So we won't know until it's all over. They rolled her away without a hitch except for the one in my throat~she's a warrior, my little Millie Moo.
They have called from surgery a couple of times and things are going well. They have completed one side and have started on the other. She's been in there since about 8:30 a.m. ~about 2.5 hours. I'll keep everyone posted.
Our hero...Dr. Dobbs

Medicine has kicked in and she's just waiting to go.



Elise has been around to both gift shops and to Barnes and Noble. She is currently visiting the sibling play room with her father. She's doing great for someone who does not like to share the spotlight ;-).


12:30 p.m. UPDATE: Femoral and Pelvic Osteotomies complete! All went well. They are now putting her in the dreaded Spica Cast~that will take another 45 minutes. Now we wait for the doctor.

THANKS for the prayers~they are keeping things moving smoothly.