2 Months!

Happy 2 months to my Violet! It's been another busy month for the Little Miss, but she is doing great today! She has finally reached and surpassed Oliver's birth weight (now she weighs in at 8 lbs 8 oz) and is eating like there's no tomorrow. We're so thankful for that! Here is her picture this morning:

It doesn't look like she's grown much since her one month picture below (even though she has), but she looks so much happier now!

I can't wait to take her 3 month picture WITHOUT the screws! Only 2 more weeks!

A Beautiful Day to Be Home!

The following are the CarePage updates I've posted the past couple of days. In a nutshell, we had one scary event Wednesday evening, but we are now home and doing great!

(Posted yesterday)
Just when we think Violet can't do anything else to shake things up, she goes and CODES on us! Last evening, when the nurse was giving her an oral antibiotic, the Little Miss got quite upset, began holding her breath, and proceeded to turn blue. A code blue was called and about a million people came running in the room. It was one of the scariest things I've ever been through. Deep down, I knew she was going to be fine, but I prayed as intently as I ever have for that VERY LONG minute or so until I heard her cry again. After she was stabilized, they moved us to the pediatric ICU to keep an eye on her and that is where we are currently sitting.
The good news is that after that very stressful situation, she had an extremely boring night. She slept the whole night through and even got her oxygen off without any problems. We've seen the infectious disease doctor as well as the intensive care doctor this morning. We're still waiting to see our nurse practitioner who works with Dr. Singhal (the plastic surgeon). So we're not really sure what the plan will be yet, but most likely we'll be transferred back to the general medical floor where we came from, as she certainly is not critical enough to be in the PICU anymore. There's still a small chance we'll go home today, but I'm not holding my breath (and hopefully Violet won't hold hers either. . .okay, bad joke).
I'll continue to keep you all updated. Hope everyone is having a Happy Thanksgiving, and eat some extra turkey for us (ya know, hospital food just isn't that great)!

(Posted just now)
I'm sorry I didn't get an update written yesterday to let you know we wouldn't be coming home. The doctors were just a little too nervous discharging us so soon after an "acute life threatening event" (i.e. a code) which I completely understood. So we got to spend Thanksgiving in the hospital, but Russ' mom took care of us and brought a delicious dinner courtesy of her friend, Connie. Thanks Jo & Connie!

Violet continued to do great after we were transferred back to the general medical floor, and when the team rounded on her today, they agreed with the discharge plans. In fact, the biggest issue we faced today was trying to get her antiobic filled. Turns out, the outpatient pharmacy at Children's Mercy doesn't take our insurance (who doesn't take Blue Cross Blue Shield??), and because the drug is so expensive, not many pharmacies keep it on their shelves. So we spent most of the morning on the phone, but eventually found a pharmacy who had it AND took our insurance (We were prepared to spend the nearly $500 out of pocket for the linezolid, but weren't all that excited about it, especially since this is only half of what we'll ultimately need.) Shortly after noon, we got to leave the hospital and see this absolutely gorgeous day God has given us!

So next Thursday we'll follow up with Violet's primary doctor, and then on Friday we'll go to infectious disease clinic and cleft clinic. We'll follow up with both of them frequently until December 15, when the pin removal surgery is scheduled. We're really praying for no more surprises these next couple of weeks.

Thanks again for all of the prayers for our family. I hope everyone had a wonderful Thanksgiving. We have SO MUCH to be thankful for!!

Not-So-Sweet Home Away from Home

In case you haven't heard, we've been back at Children's Mercy this week with Miss Violet and an ugly infection in her right jaw. Here are the updates I've posted on the CarePage:

(Posted on the CarePage yesterday)
There are two complications that can result from the mandibular distraction surgery: (1) the screws can come loose and (2) the jaw can become infected. Miss Violet has successfully achieved both of these; we hope she doesn't always feel the need to defy the odds! The good news is, unless she invents some new complication, we should be smooth sailing until the hardware comes out!

So the news of the day is. . . we had an ultrasound of her jaw done which showed an infected fluid pocket and a track from the pin site to the lower jaw where it is red and swollen. The preliminary culture results of her wound (the pin site) showed staph infection, but we won't know which antibiotics kill that staph until the results are finalized tomorrow. Most likely, the antibiotic she is currently getting through the IV (clindamycin) will cover the bug and she will go home taking it by mouth. We will have to continue the antibiotic until her hardware is removed on December 15. Unfortunately, she will have to go back to OR tomorrow to drain the abscess and wash the tissue with antibiotic. It should be a relatively quick procedure (~30 minutes), but yet another experience with anesthesia. Poor Baby! She's been such a trooper through all of this, and we are just so thankful for that.

If everything goes as planned, we should be able to go home sometime on Thanksgiving Day. I may have to convince Mom to do Thanksgiving dinner as an evening meal instead of a noon one :).

All-in-all, it could be much worse, so we are very thankful for what we've learned so far. Please pray with us for an uneventful night; that the culture comes back showing what we think it is going to show; and that surgery is very routine and uncomplicated tomorrow. Also please pray for my patience with these blasted pins for the next 3 weeks! I don't think I've ever felt such "dislike" for inanimate objects before. I just can't wait to see and hold my precious baby girl without them.

I'll try to update tomorrow after surgery. Thanks again for your continued prayers and words of encouragement. . . God continues to be faithful!

(Posted on CarePage just now)
It has been a pretty eventful day for Miss Violet (and the rest of us). She had a relatively normal night up until her 4:00 a.m. feeding. She became pretty fussy after that, but didn't really care to eat. I wanted her to eat a little more before 7:00 a.m. because after that she couldn't have anything else in preparation for surgery. Once the lights in the room were turned on this morning, I realized why she had been so fussy. . . the hard, red spot on her neck had opened up and was oozing all over her neck and shoulders. It looked so painful, my poor baby girl. When the surgeon (Dr. Singhal) came through on his rounds, he thought the surgery might no longer be necessary since her body basically did what he was going to do surgically. He said we would redo the blood work that was done on Monday and if the numbers had improved, we wouldn't have to go back to OR.

Next, the infectious disease team came through. The worst news of the day was that her staph is the "bad" kind, MRSA. Not only that, it is resistant to the clindamcyin we've been treating her with, so she hasn't had any effective treatment for her infection since we've been here. Only ten percent of the MRSA here at Children's Mercy are resistant to clindamycin, so yet again, Violet is showing she is special and not about to fit into any mold. The plan is to change the antibiotic to vancomycin + rifampin for 24 hours while here, then change to linezolid when we go home. Linezolid, like vancomycin, is a "big gun" antibiotic, but unlike vancomycin, can be given orally. She will be on it until she's a week post-op after the removal surgery (probably until just before Christmas). Until then, we get to add infectious disease clinic to our weekly schedule. One of the possible adverse effects of this drug is myelosuppression (decreased red/white blood cells and platelets), especially when it is given for longer periods of time as will be the case with Violet, so they will be monitoring her frequently for this. The ID doctor said there wouldn't be any "precautions" per se that we need to take after we go home, just normal common sense (i.e. handwashing, etc).

Meanwhile, the bloodwork came back and looked basically the same as it had on Monday, so Dr. Singhal decided it was prudent to go ahead and do the irrigation and debridement. She was taken to OR about 1:00 p.m. and Dr. Singhal was done with her by 1:30 -- it was really fast, thank goodness. (By the way, Dr. Singhal said this is the FIRST time he has ever had to take a patient back to surgery for I&D after the distraction surgery; she is definitely keeping everyone on their toes!) She came out looking wide-eyed and HUNGRY, and is now quite content with her fully belly and oxycodone.

So provided everything goes smoothly the rest of the day and in the morning, we hopefully will still be able to go home tomorrow after her 24 hours of vancomycin are completed and insurance has approved the linezolid (because it is super expensive). As you can tell, it's been a busy day. It started out rather poorly, but I'm feeling much better now. I'll try to update tomorrow to let you know when we make it home. Thanks again for all of the prayers!!

This is what I saw this morning when the lights came on, not at all a pretty site!

Somehow, she can still manage to look sweet even with all of that yuckiness on her neck. We've got ourselves one tough baby girl!

Since this is the first time the plastic surgeon or the infectious disease doctor had ever seen this, they wanted pictures. Someday our sweet Violet may be in a textbook of infectious disease; we'll just have to see!

Happy Birthday, Oliver!

Can you believe our little Oliver turns 2 years old today?? What a wonderful year it has been! He's such a blessing and getting to be so much fun, too. He is always saying something to make Russ and me laugh; he makes life very colorful and we thank God for him every day. To celebrate his birthday he chose, you guessed it, a Tractor theme. We had a great time with all of our family.

Our resident cake-lady, Grandma Cheryl, didn't disappoint with this cake! It's an Oliver tractor, just like his toy and just like his Halloween costume. (By the way, I am now officially mom's understudy with the cake decorating, and I did the words, the sun, and the dirt on this one. . . you have to start somewhere, right? Someday, I hope to be half the cake lady she is.)
Me and my special boy getting ready for the guests to arrive.

After some appetizers (and a Chief's win!), Oliver was ready to tear into his presents.

Look at that cool Lightning McQueen rolling bag Grandma Cheryl got me!Singing "Happy Birthday to Oliver". . . (He was LOVING the attention, by the way, and continued the song long after everyone else was done singing.)

Blow out your candles, big boy!

Mom's Happy Birthday!

Today is my wonderful mother's happy birthday! It's a big birthday for her, but I won't divulge the actual age. Let's just say that in a couple of weeks I'll have a big birthday as well; at that time, she will be twice my age for the only time in our lives. (How's that for a riddle?) She and dad went to have some fun in the sun in Florida to celebrate, but we girls took her out on Friday before they flew out Saturday. We went to the Melting Pot and enjoyed their happy hour specials, yummy!

The birthday girl with an extra special chocolatey drink.

Some of the other fun drinks (yes, I'm still DD).
The cheese course. . .

. . . and our favorite, the peanut butter-chocolate dessert course.

Blow out your candle, mom!

I am so blessed to have such a fabulous mother. Thanks, Mom, for everything you do and for the woman you are!

Announcing. . .

For those of you who haven't heard, we had a baby about 6 weeks ago. . . ya, so we're finally getting around to birth announcements for our precious baby. If you haven't seen them yet, here is the beautiful announcement my friend Ashli made for us! (If you have trouble reading any of it, click on the picture to make it larger.)

On a side note, we had some good news this week. The results of her chromosomal test (that was drawn in her first week of life) FINALLY came back and everything was negative! The test showed a "normal female karyotype with no evidence of chromosomal abnormality". In looking on the Pierre-Robin website, their research shows that only 15 - 17% of people with Pierre-Robin have an isolated condition, which means that Violet is definitely in the minority here! We are so thankful that she falls in that 15-17%! Of course, we love her unconditionally, but it's still a relief to know that we KNOW what we are dealing with, and hopefully there won't be too many surprises down the road. And as Russ said, we can feel free to procreate again, if we're crazy enough to want to! Of course he was kidding; babies are such a wonderful blessing, and we are SO VERY thankful for our precious miracles.

Cabbage Patch Kids

I know you're probably thinking, "Enough already with the doll analogies!" but this should be the last one (she's finally starting to grow, ya know, up to 7 lbs 9 oz this morning -- yippee!). Let's back up a few years, first. Twenty years, to be exact. When we got my brother John, he weighed less than 5 pounds. I was quite the girly girl (at age 10), and played with him like he was a doll. One day we decided it would be fun to line him up next to my Cabbage Patch Kids to compare size. He was somewhat easy to pick out because of his "tan", but he was about the size of my dolls.

Fast forward 20 years to present day. . . John weighs a little more than 5 pounds now, as you can see.And here's our re-creation of the Cabbage Patch line-up. Can you find Miss Violet amongst my dolls? (And don't they age well? These dolls are pushing 25 years old!) It's pretty easy to find our Little Miss in this straight-on shot. Notice we've added some ethnic diversity since John's picture. I think mom bought me that doll shortly after we got John.
She's starting to wake up, thinking, "Mom, what are you doing?"

And I think she's had enough. A note about this doll in the blue dress:
This was my first Cabbage Patch, Serena Desdemona. Her name sounds a bit Spanish because she is indeed from Spain! You see, Cabbage Patch dolls weren't available in the U.S. yet, but being the resourceful mom she is, my mom had a friend who was visiting Spain bring this doll back for me. I was SO excited! As you can see, I added plenty more dolls through the years, but Serena always had a special place in my heart. I'm just so glad that I now have a daughter to share my dolls with!

Our Big Helper

Calvin is getting to be such a big boy, and such a BIG HELPER with his little sister. Before she was born, he told us that he wanted to help feed her, just as he had helped feed Brynn when she was littler. Then when we found out about her feeding difficulties and her special bottle, we explained to Calvin that he would likely never be able to help us in this way, but he could certainly help with her in lots of other ways. Undeterred, he continued to ask us if he could feed her. Finally, we decided it couldn't hurt anything to let him try, although we were very skeptical. I was amazed at how well he did! Keep in mind that many grown adults have been frustrated trying to use this Haberman bottle, but Calvin listened very carefully as we explained how he had to hold it, how he had to squeeze the nipple, and the angle to hold it in her mouth. As you can see by the tongue sticking out, he was concentrating very intently as he FINALLY got to feed his baby sister.
Now if only we could get him to wake up a couple times a night to take care of those feedings!

In Daddy's Hands

Could my babies look any more different?? Each of these pictures was taken in the first month or so of life. See if you can tell who is who. . .

Isn't it amazing how creative God can be when given the same two sets of genes? Before Violet was born, I wondered who she would look like, Calvin or Oliver. I should have known, she would look like VIOLET! Our babies are certainly unique; I find myself daydreaming about what they will look like as they grow up. I'm pretty confident that they will each continue to have their "own" look. How many different combinations can Russ and I produce? Only the Lord knows the answer to that one!

Halloween on the Farm

For Halloween this year, our theme was "On the Farm" and we had a great barnyard for sure! We met at Jo & Denny's on Friday evening for family time and a yummy soup supper. So our farm consisted of: (front row): Oliver the Tractor (who isn't thrilled with the picture taking); (2nd row): Farmer Tyler on his horse, Brynn the duck, Ella the cat, and Ross the dalmation puppy dog; (back row): hunter Jackson, Calvin the barn, and Sydney the farm girl; (not pictured): Violet the scarecrow.

We let the boys pick their costumes within the farm theme, thinking they would say a farmer, or maybe a cow or chicken. But not our boys! Oh no, they chose the tractor and the barn! Thank goodness for creative grandmas! Grandma Jo made Calvin's amazing barn costume (I'm pretty sure he's the only kid EVER who has been a barn for Halloween), and Grandma Cheryl & Grandma Kermit combined efforts to make the detailed Oliver tractor that looks just like Oliver's toy.

Here are Grandma Cheryl & Papa Kermit with their grandkids.

And Grandma Jo & Papa Denny with their grandkids. (Violet is in these last two pictures if you look closely.)
I thought this was hilarious how Ella was really getting in character by the barn.
Sydney decorated some pretty awesome treat bags for all of the kids.

Brynn made about the cutest duck ever, I think.
The kids all played so hard, and Violet finally called it a night on Grandma Jo's lap.

The weather was so much nicer on Halloween night than it was on Friday, which was great since we actually took the kids out trick-or-treating. We hit all of the relatives, and got more candy than we should eat in a year. Before getting started, though, we took advantage of the beautiful weather and took some more pictures.

Violet has her whole scarecrow get-up on now, including the hat that Sydney wore her first Halloween, when they were the Wizard of Oz.

More of the kids outside Joy & Scott's house. . .

Oliver was LOVING the tractor now!

Sydney needs to see about going to the dentist!

One house we always hit on Halloween is Ammie, Russ' 91 year-old great-grandmother. She was so excited to meet little Violet. This woman is amazing; she has 27 great-grandkids (not counting spouses) and 16 great-great-grandkids and somehow she remembers us all!

My mom and I have been making bows for Miss Violet. I decided we should be twins on Halloween, so we each have on our best orange & black bows.

Hope everyone had a wonderful and safe Halloween!