We continue to Praise!

Things have been pretty quiet since my last post.  Since being able to sleep normally, Mia is back to my incredible sleeper.  Drew and I got so tickled the first time she was able to sleep without the car seat.  We put her down and she looked at us with confusion... then plunged into her pillow like it was a swimming pool.  We watched on her monitor as she sprawled out and cherished every square inch of her bed.  The first night required a few late night paci plugs, but by day 3 of sleeping normal she made it to sleeping through the night with no problems.  In fact, lately she has been sleeping to at least 8:30- 9:00 each morning.  Her appetite is also in full swing.  She is sucking down all her bottles and is eating everything in sight.  Thank you for your prayers about this, but you can stop now.  Otherwise, I might need a second job to fund her appetite ;). 
Her incision is looking better and better each day.  Since getting the release to allow her to return to being in public, we are surprised about the boldness of people's curiosity.  Doesn't bother us... we love telling her story and opening up a conversation about God's mercy and healing in her life.  We were at Moe's eating a few days ago and one of the employees began cleaning the table next to us.  As he passed, he stopped suddenly and just blurted out "what happened?".  My first thought was, "uh-oh... what kind of mess had Mia made on the floor" (and if you could have seen how much she had smeared on her face, you would have thought the same).  Then, I realized he was asking about her incision.  I must admit, it is still in the scary looking phase.  We still have not been able to scrub it or do much more than pour water over it in the bath, so it still has the dark markings of dried blood and healing skin.  And the fact that it is cut in a zig-zag makes it even odder.  We were recently at the house of a high-school friend of Drew's and one of the kids stood over Mia with obvious confusion and curiosity.  As I approached her she says, "So tell me what happened to this kid.".  I explained Mia's surgery as best I could, and she replied, "well, I hope she grows hair fast to cover those marks cause it is creeping me out".  Out of the mouths of babes.  I got a good giggle out of that one. 
We are all getting use to the crazy zig-zag.  Maddie still calls her "zipper head", but it is slowly becoming a part of normal life for us.  I am also gradually getting use to the new shape of her head.  It suits her so much, and even think it made her look a little more like me.  After years of being told how much Maddie looks like her daddy, I relish in every comment of Mia looking like her mommy.
As her scar is healing, it is beginning to turn colors and I do my daily observation to check for infection.  I worked with heart patients (post by-pass) and saw scars every day, but adult chest scars sure look different than infant head scars.  And when it's your baby, every little red or puffy area has greater concern.  There was a small thumbprint size area on top of the incision where is was soft.  It was a little discolored and did not feel hard and uniform like the rest of the incision area.  I watched it each day and was encouraged by the fact that it didn't have the look of an infected area, wasn't painful and she wasn't running fever.  Just when I began to get really concerned, we got a phone call asking if we could move up our appointment with Dr. Strait (neurosurgeon).  A prayer was answered!  So, this morning the moment Dr. Strait walked in the door I skipped the normal greeting and pointed him to the squishy spot on her head.  He immediately dismissed any problem.  He explained that it was an area where Dr. Sargent had made a cut for remodeling in the bone and was an actual space/hole that would harden and close in another 4-6 weeks.  Exhale and smile.  That's exactly what I was waiting to hear.  I'm sure Mia was happier to know it was a normal spot so her mommy would stop shoving her head under a light and poking at her.
After commenting about how excellent her shaping and incision looked, he totally released us from his care.  We will continue to see Dr. Sargent, but as far as he was concerned, there were no neurological issues.
We go see Dr. Sargent in 5 weeks, and then I imagine the appointments will begin to slow down.  She will continue to see him until she is at least 4 years old, but will eventually be released from his care as well.  Even though it breaks my heart that she had to go through all of this, I realized how blessed we are that is was a condition that could be repaired and fixed.  There are so many precious children with conditions that have no fix, and I that is a sobering thought to me.
Thanks again friends for your prayers.  You have no idea how much of a blessing you have been in our lives!

Freedom!

Well, the last few days have been pretty normal.  Sleeping at night still isn't fantastic, but who can really blame her.  If I were strapped down and only able to sleep on my back, I probably wouldn't be able to sleep well either.  Even though we have kept her inside for the last week, she has been fighting a stuffy, runny nose and cold.  Last night she felt a little warm and her temp went up to a little over 100.  That made me a bit nervous, because a fever can be an indication of infection.  So, I called the on-call nurse and we both felt like it was due to the cold, and there was no need to panic or worry.  45 minutes after Tylenol, her temp had dropped to 99.3, and she got a pretty good night's rest (even despite mommy sneaking in her room many times during the night to feel her forehead).
Finally, Wednesday is here.  This might be any old normal day for anyone else, but to us it was a visit to the surgeon to hopefully get a full release!!  I was anxious and excited to have her seen because I had analyzed her head so much that I wanted to ask him about that tiny little red spot or bump!  We, of course, were also excited to hear those words we have been longing to hear, "Mia can sleep flat again"!  After waiting 1 hour and 10 minutes to see Dr. Sargent (super fun with a 11 month old), only seeing him for 5 minutes didn't bother us too bad because he gave us all the good news we have been waiting for.  He squeezed her head and was very impressed with her incision and the look.  He noted that her head was retaining no fluid and her incision was clean and healing remarkably well.  Whoo hoo!  Then, he made our day by releasing her to all normal activities.  We stayed a spoke a few more minutes with Leslie and then we were on our way. 
Our last stop was to Dr. Good.  Since Mia had run that little fever, Leslie suggested we go by and just get her checked out to make sure  she was not getting sick before the craziness of the holiday weekend started.  Dr. Good was so excited to see Mia.  He worked us in between appointments and spent time with us just hugging and celebrating her recovery.  After checking her up and down, everything was nice and clear except a little fluid in her right ear.  This made me feel better knowing the reason behind her fever and it also helped me not to panic if she did end up running fever.
Thanks as always for your prayers!  Continue to pray for Mia's recovery and protection from being sick!  Praise God for all this wonderful news!

Movin' right along

Well, life is slowly returning to normal for the White's.  For the first few days at home, Mia was a bit cranky and irritable.  After changing some impressive diapers (lol), we realized a large reason for her being so grumpy.  Now that her tummy is back under control, she has turned into her happy, laid-back, giggly self.  And boy is it nice to have her back.
She still has a little anxiety when we lay her down to change diaper or give her Tylenol, but we have even seen some improvement in that area as well.  Sleeping is getting better, too.  Naps are back to being great.  She is getting her 2 naps at their normal time for at least an hour and a half.  Night time is improving too.  Last night she only woke up 3 times, and all it took was a little re-adjusting and a paci and she fell right back asleep.  Each night we have seen some improvements, and we hope that continues.
We go back to the neurologist and plastic surgeon on Wednesday.  We hope that they will release her to sleep normally at this time!!  That would certainly be an answered prayer!
Again, we can't stress how awesome it is to have your prayers.  Her progress is certainly a testament to all the prayers being lifted in her honor.
Below I included a before/after picture of Mia.  The before was taken about 2 weeks before surgery and the after was taken today.  The change is amazing!

One week ago today...

One week ago today, life was very different. I was sitting in the same place on the couch as I am right now, but my little angel was 20 minutes away in the hospital. I still can't believe how far she has come. Just to give you a quick perspective, one week ago...
Mia had a JP drain tube (coming out of her head), central line (in her groin), arterial line (in her arm), I.V. Line (in her foot), breathing tube, EKG leads and a rectal thermometer. Today, she chased her big sister around the room and ate so much lasagna I had clean it out of her ears.
One week ago... Mia was on morphine and did not even know who we were. Today, she is only on Tylenol and lights up when mom or dad enters the room.
One week ago today... Mia slept for almost 24 hours straight. Today, she took her regular two naps and enjoyed the rest of the day playing and splashing in the tub with her big sister.
One week ago today... She has had nothing to eat or drink in 24 hours straight. Today, she sucked down 24 oz. of formula along with cookies, oatmeal, ham, apple sauce and lasagna!
One week ago today I had to watch my angel lie in a hospital bed and go through one of the most heart wrenching experiences of her life. Today, I picked her up, swung her around and got some of the best slobbery kisses I have ever had.
It's hard to believe how far we've come in just one week... all orchestrated by my heavenly Father. God is so good.
Please continue to pray for her recovery. Specifically that she stays illness free, sleeps better at night and her fear and anxieties to decrease. If she does catch a cold, and runs fever, they have to,run a huge series of tests to determine if she is running that fever because of the illness or the surgery. This, of course, means more traumatic times for Mia. She is sleeping better at night, but we still have a little ways to go before she is sleeping through the night solid (which should get better once she is releases to sleep flat).
Thanks again for your prayers. They continue to strengthen her each day.

Mia's Journey through Photos- WARNING: Graphic Content

I wanted to wait until Mia was home and well before releasing all her photos.  I think it's time now.  Be aware that some of the pictures are graphic.  Here's the journey of my sweet girl.

She's baaaaack!

Well, almost!  We still have a little bit to go, but compared to yesterday, we are miles ahead.  She still is a bit grumpy during wake times (understandably), and her appetite is still not all the way back.  But when I saw her sitting in the floor today across from her sister laughing and throwing toys, I couldn't help but to cry.  It was such a beautiful sight... plus, I am exhausted, so Hallmark commercials are making me cry lately. 
We still have a long ways to go before we are totally back.  She still needs a lot of attention and is a pain to feed and give medicine to.  We have to tiptoe the line between forcing her to eat and not making her so mad she begins to hate eating.  So, bottle time hasn't been a lot of fun.  There is a lot of screaming and hyperventilating.  For those of you who don't know, Maddie had major eating problems when she was between 4-12 months.  She refused to nurse/drink bottles.  There were days she would only drink 10-12 oz. all day and even had to be hospitalized due to dehydration. She went through numerous test, medications and pediatric gastroenterologists and we were never given an official diagnosis (the best guess was severe esophagitis).   So.... I am saying all this because bottle time for our family is a very sensitive time.  Our hand has been burned on the stove many times because of bottle feedings and so when Mia is having problems with it, we automatically cringe.  Please pray that I have no anxiety when it comes to feeding time.
Our other problem is what I mentioned in the last post, which is her resistance to most all that we do.  She weeps when we feed her, change her diaper or come near her with a medication syringe.  I know this will take time, but my heart is so saddened to see her like this. 
She is also having some separation anxiety (again, understandably so).  Tonight, Drew, Maddie and I snuck away for 2 hours to go out to eat and watch Maddie's Christmas musical at her school.  My mom and Drew's mom and dad stayed behind to watch Mia and she cried almost the entire time.  Once we returned, she was as happy as a lark.  Poor baby.  
Drew and I are of course overly exhausted.  She requires dedicated attention and extra effort on very simple things, so can be so tiring.  We are also setting our alarms for every two hours to check on her in the middle of the night.  
So, please pray for: her appetite to increase, her trust to be restored and for Drew and I to have renewed energy. 
I plan on posting lots of pictures of her journey tomorrow.  I wanted to wait until I knew she was home and okay before posting them, but I think I'm ready.  We love and value your thoughts and prayers and we hope that you will continue to keep us there!

Homecoming for Mia

For about a week now I have been dreaming about what to title this blog... Home Sweet Home, I'll be Home for Christmas, Hasta la Vista Hospital... But, I don't think anything that I chose will ever fully reveal how excited we are. I walked in to the hospital room this morning to find my sweet girl sitting in her daddy's lap banging her hands on his laptop and squealing. I had to almost turn around and check the room number. This was NOT the little girl from yesterday. Her pediatrician and surgeons were all amazed, too. After another hour or so, we were officially released and we loaded up the car and drove home smiling ear to ear. When we got home, she played a little with Marnie (her grandmother) and ate a Christmas cookie. Before long, she was crawling around the room and getting into trouble.
Getting her down to nap was a but tricky because she has to sleep in her car seat, but after all we've been through, this seems like a piece of cake! We are all a bit exhausted, so I am going to cut this short and take a quick snooze while she is napping! I will post a few pictures soon!
Praise God with us!

Day 5 Recovery Update #1

There is nothing like a little good news to make you feel rested and rejuvenated! Mia had an INCREDIBLE night. She only woke up once in the middle of the night (around 2) and acted hungry. Drew gave her 2 oz. and she went right back to sleep after a dose of Tylenol (which she went almost 7 hours without needing!!!). She then slept again until almost 6:30 and woke up starving. She took SIX ounces of formula!! So many praises!! We know God heard your prayers and I know you are rejoicing with us! It's been about 45 minutes now and the formula is still down. Keep praying that her appetite and ability to keep it down wil continue. I imagine that if she continues on this path, the Whites will probably be heading home today!! Keep praying my friends! We believe in the power of prayer!

Day 4 Update #3

I. Am. Exhausted. Drew and I had the perfect storm of exhaustion today- you know, those times when you are both physically and mentally spent. They mix together and create a thunder storm of exhaustion. Today was by far the toughest day and my sweet husband has barely left the hospital and yet has not complained once. He's the best dad for my precious girls and they are blessed to have him. He has gotten so good at anticipating Mia's needs and making sure she gets exactly what she needs at just the right time. I am so proud of him.
Mia had a better rest of the day. She kept all her Pedialyte down and started formula. She still doesn't really want the formula. We were able to get around 6 oz. down her, but she did throw up a little, but mostly because she choked on her reflux medication. Please continue to pray for her appetite to improve and that it all stays down!
The other problem we are having is that she is terrified and upset at anyone who comes near her. She has been poked, prodded and hurt by so many doctors and nurses that she cries the moment they even look at her. It is so sad. She screams through diaper changes and even simple things like taking to her. We think this has also effected her eating as well. We know her distrust will not go away immediately, but we prays She can begin the process.
Big sister is such a trooper. We have tried to have some special time with her lately and she has been so patient and understanding through the process. Continue to pray for her strength.
Pray for a rejuvenation for Drew and I. We need His strength to get us through the next few days.

Day 4 Recovery Update #2

I will admit that my faith was shaken this morning.  My spirits were low and my frustrations were high.  I need to apologize and confess that I doubted God this morning.  As I saw my little princess throwing up this morning and looking so tired and dehydrated, I doubted.  Even after all that He has brought us through.  I am ashamed to admit it but I need to confess it and repent. 
Here's some good news.  We switched to Pedialyte and have held down a little over 3 oz. so far.  We are going to stay on clear fluids and they have prescribed Zantac in hopes that is soothes her tummy.  Please pray that she is able to continue to hold these fluids down and it able to easily transition into her formula and solids.
Since getting on the IV fluids, she has perked up.  She was even doing some of her old antics.  I have included a video of her doing her "mad face".  If you have ever seen her do this before the surgery, this will absolutely melt your heart.
She got her JP drain taken out today (her drainage tube in her head)!!  This is wonderful!  We started with: a breathing tube, central line, JP drain, arterial line, IV line, EKG and rectal thermometer and now we are down to just an IV!  If that doesn't make you want to praise God, I don't know what will!
We have had a lot more wake time lately.  This afternoon these wake times have been very chill.   She has been lying in daddy's arms for over an hour now and she is so content.
I know God can be glorified despite my doubts and failures, but please pray that I may be a better witness to His provision and mercy in our lives.  Please also pray that Mia's appetite increases and that she hold down everything.  We love you, friends.

Day 4 Recovery Update #1

The combination of being very tired and walking in to some bad updates on Mia has really dampened my spirits this morning.  So, excuse me if the post this morning is very short.
After having a restful night (other than not eating AT ALL), she woke and only took under 3 oz. of formula.  She threw up a little of that.  Then, we tried apple sauce and unfortunately 30 minutes later she threw all of that up.  Looks like we have to be back on IV's and this will probably delay us getting out.  Please pray.

Day 3 Recovery Update #2

Whew... I am tired. I think we have been running off of adrenaline and it has finally crashed! But God is continuing to provide us strength.
Today was a bit tougher. She is starting to have more periods of awake times and therefore a lot of grumpiness and irritability. It's a good thing... Just more work for mom and dad. Her swelling was pretty rough today. She did get vision finally out of the left eye and that helped a lot. Marnie brought Maddie to visit her today. Maddie's words: "this doesn't look like our baby... She looks like chubby Mia. But I still love her". Maddie actually crawled in bed with her and they "played" for a while.
There were several times today that she woke up and played. She rattled her toy, played with her feet and even clapped to "if you're happy and you know it". I posted a link below to watch her in action.
Papa (my dad) left today to head back to Mississippi. It will feel a bit weird going to the hospital tomorrow without him. He has been at the hospital every second that we have and his presence will surely be missed.
A little later tonight Gramps and Nana came to watch Mia while Aunt Laurie and Uncle Chip took Drew and I out to eat. What a wonderful time we had... I felt so refreshed after getting out for an hour!
Both Drew and I got to hold our sweet girl tonight and I forgot how good that felt. She obviously loved it too, because she sunk deep into arms and rested comfortably the whole time.
Our main prayer request right now is to have an increase in her appetite. It's pretty poor right now. That has to improve if she's going to break out of hospital jail. She is going pee pee perfectly now, but we got to get our appetite up! Please pray for this to improve!

Sweet Mia playing:
http://www.youtube.com/watch?v=ckdYekf8B3A&sns=em



Keep praying friends!

Day 3 Recovery Update #1

Overall, Mia had a pretty good night.  They started giving her some IV fluids to encourage her to urinate on her own.  It did the trick.  She had two pee pee diapers last night, praise God.  This is why we value your prayers so much!
When I walked in, daddy was holding her gently in his arms and they were watching Sports Center.  Unfortunately, her swelling is still pretty bad, but she looked so comfy in daddy's arms.  The swelling has increased a little from when I left last night (which is normal and possibly due to the increase in IV fluids).  Her right eye is swollen shut and her left eye is almost completely swollen.  She can slit her left eye just a little... enough to see us at least.  I am very ready to see that swelling subside, and I am sure she will be too!
The plastic surgeon resident came by and said she was doing well.  He said the swelling today was to be expected and said he hopes that it will decrease today.  He said if all continues to go well, she should be released in the next 24-48 hours (48 hours being more common).
Right after taking her oral dose of her pain meds, she spit-up/ threw up a little.  Sadly, we don't know how much of her pain meds came out with that throw-up, and nothing can be given again for another 4 hours.  We are praying that most of the meds remained, but can't be sure.
Her eating isn't where they want it to be, and she had another little throw up after getting her settled in bed.  So, our biggest prayer concern is that right now. Please pray her appetite increases and she is able to keep it all down.  This is an important step in going home. 
Please also pray that her pain is managed well today and her swelling subsides quickly!  Pray that she is able to rest well today and remain comfortable.
As always, we covet your prayers. We have seen your prayers answered and there is nothing more encouraging than knowing we have a large network of friends and family praying for this sweet girl.

Day 2 recovery update #3

Today was a long tough day, but it ended with several victories! We have now been moved to a room and it feels so good. The room is quite large and we no longer have to share a tiny waiting room with lots of other families. Believe it or not, her swelling was already improving by the end of the day. She was even able to get slits from both eyes! I couldn't believe it! This was a specific prayer request from earlier today and God has answered those prayers. Thank you for your faithfulness in prayer.
Her sodium levels have been fantastic (so much that the PICU doctor said he suspected her first low number may have been wrong). So, because of this she was relieved of any fluid restriction and can eat when she's hungry! That makes for a happy Mia!
Her only problem right now is that she is not peeing on her own since removing her Foley catheter. Unfortunately, this means a Foley has to go in. As they were putting it in around 4:00, she began peeing on her own. They think she just needed a kick start. If she doesn't go again by midnight, the Foley goes back in. Boo. Please pray that she is able to go on her own. It is very difficult to cath her and it also introduces the risk of infection too.
Daddy has decided to stay with our sweet girl tonight. He said God blessed him with the ability to sleep through anything, and knows I would get ZERO sleep. He's an amazing father and precious husband. He called about an hour ago to give me a quick update and he was tickled to tell me that he got to hold her for the first time tonight. They needed to weigh her (to check for fluid retention), so he was able to get a few minutes of cuddle time. Even though it only lasted a few minutes, it overflowed his daddy cup.
I hope to post a few pics tomorrow once her swelling subsides a little. I have to warn you, if you thought she was cute before, just wait until you see her now. ;).
Make sure and sign her guest book and conti use to lift her up in prayers! We believe in the power of prayer!
Mia's guest book: www.websitetoolbox.com/guestbook/journeyofmiahope

Notes to Mia

Okay, friends of Mia, I need your help. I have been journaling Mia's progress not only to keep you all informed as you go through this journey with us, but also as a way for Mia to see the outpouring of love, support and prayers for her. If you would, please click on the link below. It will bring you to a website that will allow you to leave a note to Mia. All you have to do is click on the "sign guestbook" link and then put in your name and message (leaving your email is OPTIONAL). Make sure and let her know who you are (and how you know her) and then leave some words for her to read. Be specific... tell her how you prayed for her, tell her how her journey affected you, tell her what you want to her know about this time. Picture her reading this in 10 years. We love you friends and truly value your love and support, and we want to make sure she knows how many people love her too.
Here's the link:
http://www.websitetoolbox.com/guestbook/journeyofmiahope

Day 2 recovery Update #2

It's one of the saddest things you've ever seen... poor baby's swelling has reached it's peak.  After they took off her dressings, it tends to release a good bit of pressure and allow some extra blood/fluid to be released into her face.  So now both eyes are swollen shut. It was so hard to see her struggle to open her eyes and not be able to.  Breaks my heart.  We expected the swelling to peak today, but I just prayed it wouldn't shut both eyes.  But, I have to remind myself it is temporary. 
The good news is she WAS cleared to a room.  The only problem is that there may not be one available to her right now.  If not, she will go into a small room located inside the PICU. It's not great, but it does have it's own bathroom and a small couch to sleep, so we can at least stay with her tonight. 
Otherwise, all else is going good.  Her vitals have all remained within normal limits and she is taking her formula well.  Please pray that her swelling subsides quickly and she is able to rest comfortably. 

Recovery Day 2- Update #1

I called at 5 a.m. this morning to check on little bit.  They said she did great last night.  The nurse said she gave her morphine around 12 midnight and it did make her sick.  So, the plan is to stick with Tylenol unless we feel like she is in a lot of pain. 
We all got dressed and hurried to the hospital and we found our little sweetheart lying comfortably in bed.  As we had been prepared to see, her swelling had increased a good bit.  Her right eye is completely swollen shut, but she can still peek out of her left.  We were SO excited to see find out she could still have vision out of one eye.  Many babies after this surgery have both eyes swollen shut and have no vision for several days.  This (as you can imagine) brings on major frustration.
Her nurse spoke to us for a few minutes to give us her update.  All was going according to plan with no surprises or complications.  Her sodium numbers have remained good and her temperature and other vital signs have all been within normal limits.  We praise God and give Him the glory!
Plastic surgery is expected to come by today to give the official thumbs up to go to a room.  PICU and neuro have already given their okay, so one more approval and we will be on the floor.  Not sure what I think about that.  I am excited that it means she is progressing so well, but nervous to know that her care will not be one on one anymore.  But, we trust in God's timing.
Another expected milestone today will be the removal of her bandage (a.k.a. fancy turban).  I am anxious to see her head today, but dad is a dreading it a bit.  As I was typing this, the resident doctor from plastics walked in and did his assessment.  He was very encouraged at her recovery process and said that she appeared to be progressing normally.  Then, we got the big reveal.  He slowly removed her dressings... she whimpered through the process, so I took her hands and rubbed them gently and she immediately calmed down and let him finish the job. 
For me, it was like unwrapping a present on Christmas morning!  I couldn't wait to see the new shape of her head.  And just as I expected, it looked fantastic. Despite the swelling, I could see a pretty little round head, and it was beautiful.  Underneath a maze of matted and wet hair, I saw that gorgeous zig zag scar running across her head.  That scar will be the last reminder of this journey she has been through.  A physical symbol of the struggles, triumphs, prayers and victories during this time in her life.  She might have to dig through a maze of flowing hair to see it one day, but when she does find it, I hope she is reminded of God's mercy and presence in her life.
That's it for now, friends.  I will continue to update.  Please pray for her swelling to subside quickly, recovery to go smoothly and pain to be minimal.  We covet your prayers.

Day 1 recovery Update #3

Well, day one of recovery is almost done.  I was so impressed with the strength of my little sweetheart.  As previously mentioned, all went great today other than that pesky sodium.  However, at her 2:00 blood draw, the numbers had gone up significantly! Another prayer answered.  She got her first taste of formula around 3:30 and she was so excited! Her heart rate monitors started ringing and we realized her heart rate had shot up to 190 bpm!  That gave us a good giggle. She couldn't contain her excitement. It was only 20 ml (less than an ounce), but girl sucked it down in less than a minute.  When it was all done, she was none to pleased... and she made sure we heard about her displeasure.  But, she eventually settled down for another good nap.
Dr. Good (her pediatrician) came by to check on her (on his own time, by the way).  I know I have said it a thousand times, but Mia and Maddie have the best pediatrician in the world.  He is the most caring and loving doctor I have ever known.  He delighted in her progress as much as we did and took extra time to explain and talk to us about everything that had gone on.  He left us with a warm hug and promised that he would continue to check on Mia.
Right before we left I was able to give her 25 more ml of formula.  Her heart rate again soared and she fussed when it was over.  After lots of kisses, 6:00 p.m. rolled around which meant mom and dad had to be kicked out of PICU.  Tonight was a little harder leaving... I think because she was awake and crying a little before we left.  That broke my heart because I just wanted to grab her and hold her, but instead I had to walk away.  That was tough.
I called just an hour ago and her nurse said she was doing great.  She took another 25ml of formula and they had just finished watching SpongeBob together on the TV over her bed.  That made me laugh.  She said she just laid there, sucking on her paci and watched SpongeBob for a good while.  Sweet sweet girl. 
Keep your prayers coming! Tomorrow will be a potential BIG day!  We might get to leave PICU for a regular room and the bandages should be coming off!  She will also be much more alert, which is going to be cause for more fussiness and irritation over her restraints.  As always, we will keep you updated!

Picture of my sweet girl

I wanted to wait before posting pictures until she looked a little less scary.  So today, during the time she was awake, I snapped a quick photo.  I thought today was a good day to let everyone see how she was looking because she might have quite a bit more swelling tomorrow. 
This is my sweet angel resting comfortably and having a little chat with mom.  If this doesn't melt your heart, I don't know what will.

Day 1 recovery Update #2

Who's the best baby in PICU? That's right... Mia Hope.  My little champion is cruising right along.  We met with the PICU physician this morning during rounds and he couldn't be more confident and impressed with her recovery.  All her numbers are great, other than her sodium.  Moments ago they sent a new sample of blood to the lab to re-check her sodium numbers.  If all is good, they will back off on her fluid restriction. 
About 20 minutes ago she was able to drink some Pedialyte (about 1-2 oz) to see how she could tolerate it.  So far, so good.  We are praying she is able to keep it down.  If so, she gets to try around 3 oz. of formula.  I know she would LOVE that because she sucked down that Pedialyte in about 2 seconds flat, and she wasn't too happy when it disappeared. 
Most of the day she has been resting comfortably.  There have been periods of waking up and crying, but a majority of the time she has been sleeping well.  Her last dose of morphine was at 6 a.m., so you can see how tough this little girl really is! 
We had about a 4-5 minute time period when she opened her eyes and just stared at me.  No fussy or crying, just gazed deeply in to my eyes.  I talked to her the whole time and updated her on what all she has been missing, including how desperately her big sister missed her.  I also made sure to let her know how many people were praying for her, and how truly blessed she was to have such a strong network of believers lifting her up in prayer.
Pray specifically for her to hold down all fluid intake over the next few hours, pray that her sodium levels would return to normal and pray that she could continue to rest comfortably and recover quickly. 

Good morning and good news- recovery day 1

Recovery day #1:
This morning around 6 am I called to check on my little lamb and she is doing great.  She had a fantastic night with no problems.  We all got quickly dressed and dad, Drew and I headed to the hospital. 
Once we got there her nurse updated us with great news.  She said she had a fantastic night and the only small problem they had was that her sodium levels were a litle low, so they just restricted her I.V. fluids a little.  She has been on room air all morning and her oxygen levels are great.  To our surprise, her swelling was very minimal.  It could get worse, but it is a lot less than expected and she can still open her eyes. 
Her drain tube is started to run clearer (which is good) and they might even take off her dressings as early as tonight.  She will get to drink some clear fluids in a few hours and they will see how that goes. 
I am heading back in there now to sit with her awhile.  We will keep everyone updated on her progress!  Your prayers are lifting her up, friends!

End of day one

For 7 months this day has always been on our mind. Even in the happiest times with Mia our thoughts always went to this day. So, to know that it is officially behind us feels very good. I know recovery is going to be a long road, but each hour that passes is one closer to seeing her chase her big sister around the playroom again.
The rest of the evening was pretty uneventful... which is a wonderful thing in PICU. Boring = good. She did open those sweet eyes a few times. But her pain meds have pretty much kept her comfy and sedated.
Let me just take a quick moment to brag on the incredible T.C. Thompson PICU staff. I have worked in the healthcare industry for over 10 years and I have never met a more loving and professional health care staff. They have all certainly found their calling in life and treat my little Mia like she was a member of their family. I can't wait to tell Mia about how much love and care she received from these amazing people.
I called to check on her about 10 minutes ago and Mia's nurse said the breathing tube has been removed! Hooray! She did really well and even fussed at them a little! Her temp had risen a little, but after removing some covers, it started coming back down. Otherwise, she is resting comfortably and they anticipate that she will have a good rest tonight.
We go back to the hospital in the morning to hang with my sweet girl. Tomorrow should be tough on her as she goes through a confusion of becoming alert and not being able to do much other than be restrained in her bed.
Please pray for a trouble free night, no complications and a good day tomorrow. As always, we will keep you updated on our little fighter.

Post-Op Update #2

Finally got to see my little bandaged sweetheart.  They had to do quite a bit of clearing out secretions that had settled in her trachea (she had a runny nose before surgery).  But, once they did that, she settled down and was doing great.  Her vital signs were all stable and she has already started to breath over the breathing tube.  In fact, while I was in there, they took some blood gas numbers and they were so good, they turned off her breathing tube and has plans to remove it all together by tonight. 
I know I am painting a pretty picture right now, but I don't want to be too deceiving.  She still has a very long tough road ahead.  The PICU doctor talked to us and told us that the major challenges will be tomorrow and Saturday.  While we were in there she had periods of struggle and confusion.  That was tough to watch.  But, a little morphine later and she settled back down.
It's tough... I wish I could take her place.  I wish I could speed up time.  All I can do right now though is rub her check, hold her little hand and let her know mommy thinks she's the strongest little fighter I have ever seen.  Tonight we are going home and leaving my precious little lamb in the hands of these amazing gifted people in PICU.  I know she is in the best care possible, but my mommy heart weeps for our separation. 
Please pray for tomorrow.  It's going to be a tough day.  A lot more swelling is expected tomorrow, a peak in her temperature and a lot of struggle and confusion.  Pray for our strength and rest tonight.  We are pretty spent, but we will fight like our little lamb.  She's my inspiration.

Post-op update #1

That's right... I titled that one POST-OP update #1!  Surgery is complete and it went well! They had a tough time getting an arterial line (due to her small arteries), but once that problem was solved, it went as planned.
And the best part of my day?  I got to see her precious face as they wheeled her to PICU.  I even got to rub her little cheek and give a sweet kiss.  She is still on a breathing tube and will be for a little while longer.  We get to visit her in PICU in about an hour.
It's time for mom and dad to finally eat now.  I will update again once we get to visit her in PICU!
Recovery day one has begun...

Surgery Update #4

Happy news- we just spoke with Dr. Strait (the neurosurgeon).  He sat with us and explained how well things went and were going when he left (he got caught speaking with another case, so he had been gone from the OR for around 45 minutes).  He said that his part when very smoothly and the remodeling by Dr. Sargent went "remarkably well".  While he was still here, another beautiful ring of the phone...  the nurse reported great success and only 15 minutes left!!  Praise our Healer! 
Next step is a debriefing with Dr. Sargent and then we get to see our precious girl as she is wheeled by to PICU. 
We are praising our God and hope you will join us!
Keep praying... still a long road ahead!

Surgery Update #3

Another precious phone call... all is going well.  The surgery is progressing well... we had a slow start due to problems getting her arterial line going. But, we are cruising now.  Leslie, our wonderful nurse practitioner came by with more details.  She called in to check on Mia and they gave her the information above that she in turn shared with us. She also said that they had removed the front and side bones and were almost done with the rest of it.   In was good to see her and have her confirm that Mia was doing well. 
Your prayers are lifting her up.  We are praising God.

Surgery Update #2

I didn't know I could hold my breath for over an hour, but I just did.  They took her back around 8:30 and told us it would take around an hour before we would get our first phone call that the surgery was starting.  By 10:00 I almost couldn't take it.  Why wouldn't the phone ring?  Thankfully I was surrounded by a room full of friends and family to keep me from totally losing it. Pastor Drew Scott, Pastor Aaron Martin, my mother in law, father and precious friend Stephen Archer were standing beside us during what seemed to be a lifetime.
Then it happened... the most beautiful sound in the world... the ring of a phone.
The nurse said it took a little longer to get her anesthesia going, but she is doing fine and they had begun the surgery.
"She's doing fine"... such beautiful words.  I can breath again. 
Phone call #1 is down... can't wait to get the next one.

Sugery Update #1

Got to the hospital at 6am this morning.  Mia was in the best mood.  Laughing, talking and being her silly self.  She did pretty good until around 7:15.  After a lot of poking and prodding, she realized she was tired and hungry and that made for an unhappy baby.  But, a few minutes later, they came in with some meds to help her relax.  Pastor Drew Scott joined us and we prayed over her moments before heading to the surgical waiting room.  I have to admit, that walk was near impossible for mommy.  My legs felt like jello and I was sure I would throw up.  But my God, my Rock held my hand.  I want everyone reading this to understand it is by your prayers being lifted for my family that I am able to make it through this.  And for those hundreds of prayers being lifted, it means more to us than you will ever know.
The next 30 minutes were spent giggling over her drug induced silliness.  For those of you who have seen her growling "mad face", you will understand how cute it looks when she is loopy. Her Papa had her clinching her fists and grunting at every person that walked by.  Silly girl.
Then it was time to hand her off.  We all smothered her with kisses and I kissed that precious head one last time.  The nurse took her from my arms and before I left, she was pulling off her glasses and entertaining a crowd around her. That's my girl.
So, now we wait.  We will get calls pretty continuously, so updates will continue to come. 
Pray friends, pray.

Information Overload

Today I titled "Information Overload". I have never had more information shoved in my brain in such a short period of time... And I took Cardiovascular Physiology in graduate school.
The day started with 4 sweet hours of mommy and Mia time. I soaked up every minute of playing in the floor, feeding her oatmeal and chasing her every time she attempted to scurry up the stairs.
After nap, daddy came home and we headed to T.C. Thompson for pre-op procedures. After experiencing ONE ear infection in the 10 months she has been alive, Mia began coughing and sniffling on the way. I immediately began praying. Please God keep her well.
We met a entourage of people- the anesthesiologist, PICU doctor, registration staff, Dr. Sargent's nurse practitioner, and a few other nurses and staff. Each time we answered a long list of questions and were given a lot of information. Any time they would ask if we had questions, our heads were spinning so much we often just sat there with glossy eyes. After Mia was deemed okay for surgery (praise God), we were given a tour by Leslie, Dr. Sargents nurse practitioner. Each time we went into a new area, the staff already new Mia, and boy did she put on a show for them. She played peek-a-boo, waved, clapped and babbled for every doctor and nurse. I loved that they got to see her at her best.
After a grand tour with 5 million more bits of information, Leslie left us with a warm hug and a promise of prayers for Mia. Last stop of the day was the Lab for blood work. Mia did not enjoy this as they had to do a venous blood draw (a.k.a. Stick a big ole needle in her arm). She let out a good cry (bloody scream), but settled down and was smiling and laughing before the band aid was even on her arm.
So, here we are. I can literally feel the warmth of prayers I know have been lifted for our family. Maddie even placed her hand on Mia's little head and prayed a precious prayer for her before Mia went to sleep tonight.
Deep breath...all right... Let's do this.

Craniosyno...what??

For an explanation of how it all began, click here
Journal entry #2:
I must admit I was a little embarrassed about my lack of knowledge after learning about Mia's diagnosis.  But, give me a break... my master's degree is in sports medicine... odd head shapes were a little outside my territory.  They didn't stop me from reading every website and book I could get my hands on once I learned about her diagnosis.
Step one- I had to learn how to say it.  I teach medical terminology to my students every day... but come on!  This word had a LOT of letters.  Okay, so sternocleidomastoid and proprioceptive neuromuscular facilitation rolls off my tongue like nobody's business, but this was outside of my normal realm of vocabulary.  So, here it goes... CRANIO- SIN- OS- STOSIS.
Step two- what is it? why does Mia have it? what can be done about it? 
Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.  Although the statistics vary from one source to another, craniosynostosis occurs in roughly one out of every 2,000 live births and affects males twice as often as females.  Mia's closed suture is the one that runs in the direction from her nose to the back of her head.   It is called Sagittal synostosis (scaphocephaly) and is the most common type. The early closing forces the head to grow long and narrow, instead of wide. Babies with this type of craniosynostosis tend to have a broad forehead.  It is not typically related to any other condition and they don't believe it is even related to heredity.
The symptoms include:

• Absence of the normal feeling of a "soft spot" (fontanelle) on the newborn's skull
• Disappearance of the fontanelle early
• A raised hard ridge along the affected sutures
• Unusual head shape
• Slow or no increase in the head size over time as the baby grow

Mia was definitely a very typical case.  Her soft spot was barely there, and you could see the raised hard ridge running down the center of her head.  And that forehead was pushed quite a bit foreword.  Thankfully though, her head growth has been good.  Once head growth slows down there is a increase chance of having intercranial pressure issues.  Mia's problem will be fixed early enough that we don't have to worry about that.
The only fix for craniosynostosis is surgery.  If left alone, she could experience problems with seizures or neurological development delays. 
Step 3- What will they do during surgery?  This is the question I get asked the most.  If you don't like reading about this kind of stuff, you might want to skip down to the next paragraph.  After anesthesia is administered, the neurosurgeon will cut a zig zag cut from ear to ear.  (They do a zig zag cut so her hair will naturally grow over the incision)  He will then remove the top part of her skull all while protecting the brain.  The plastic surgeon (Dr. Sargent) will then take over and reshape her skull and correct the closed suture.  The skull is then fixed back in to place and she is closed up.  The entire surgery lasts around 4 hours.

Praise God for modern medicine.  Praise God for gifted hands. 

As time nears to her surgery, my brain has slowly been shifting from medical to mommy.  I have seen numerous surgeries (open heart surgeries included) and helped hundreds of patients rehabilitate after those surgeries.  But now it's personal.  I'm not sure how I will do with it, but I know my God will give me strength.

Tomorrow is pre-op day.  We will be given a lot of information to digest tomorrow.  Pray that we won't be overwhelmed by all the news.  Also pray that Mia continues to stay healthy.  Surgery can't be performed on a sick baby.  Pray for big sister... she isn't quite sure what to expect (other than a few fun days with grandmother).  But I know her sweet heart will ache for her baby sister.  Her prayers for the last 6 months ALWAYS include "and please help Mia not to cry when she has surgery". 

Words cannot express how your prayers have lifted us up.  Keep 'em coming... they are appreciated and needed.

Start from the Beginning

So many people have been praying for our sweet Mia, and have also been curious about her surgery and condition.  Because of that, I have decided to dedicate a little time to talking about my sweet Mia and this crazy thing called "craniosynostosis". 
On January 28, 2011 God blessed our family with an 8lb bundle of joy.  After completing her measurements I can vividly remember the nurse saying "my, she has a big head!".  I don't know why, but those words stuck with me and it always remained in the back of my mind.  We took our new little bundle to her first doctor's appointment when she was just a few days old.  Our regular pediatrician was booked.  Instead, we were placed with a new doctor who had just made the move to Highland Pediatric from T.C. Thompson.  From the moment I met Dr. Good, I knew God had orchestrated this change.  I had never met a more caring and loving doctor and I was thrilled to have my girls under his care.
Fast forward 3 months.  Time for check ups and shots.  Both girls were due (Mia's 3 month, Maddie's 4 year).  I absent-mindedly scheduled the appointment on a day Drew would not be able to stay the entire time.  And, of course, right before the shots were administered, exit stage left for daddy.  After screaming and gnashing of teeth, the shots were over and we were ready to hit the door.  Dr. Good smiles at me and says "you have two beautiful health girls".  But then as he was handing Mia back to me, I saw him slowly  furrow his brow.  I watched as he slowly and meticulously observed Mia.  I can remember holding my breath a little waiting to hear what I could tell was bothering him.  Finally, he asked "have you ever noticed that her forehead protrudes a little"?  Taken back a little I replied "I suppose... but I just thought she had a goofy shaped head.  Don't all babies have goofy shaped heads?"  After a little more observation he very calmly talked to me about the fact that he was a little concerned and would like to see her back in a month to see if it improved. 
Deep breath.....
Immediately my medical mind went in to overload.  I got on the computer and started the research.  That's when I learned about a word that would change our lives... craniosynostosis.  I couldn't even pronounce it... and I teach medical terminology!  In a matter of hours, I became and expert on the condition.  The way I explain it today is this... babies are born with their skull in pieces...on purpose!  It allows for brain growth and expansion.  Two of Mia's bones have fused early.  So the suture (joint) that runs in the direction from nose to back of the head is already joined when it should be separate.  This will not allow her head to grow in a east and west direction but instead in a north/south direction (giving her head a "boat like" shape). 
Poor Drew... by the time he got home I was a wreck.  I can remember just saying to him... "Dr. Good just said she was healthy and was handing her back to me... why couldn't he just have stopped there?"  I cried, and worried and cried and researched. 
The next few weeks were torment.  The first few days I almost didn't even want to see her.  I was afraid it would confirm my suspicions and cause me to spiral in to a tornado of worry and anxiety.  Aaaannd... it did.  She was all I could think about.  I would go to her crib and just stare at her as she was sleeping... and I would analyze that head.  One moment I would say, "there's nothing wrong with her head, she's completely normal".  The next I was convinced the opposite.  The remainder of my time was spent looking at pictures of her, pictures of me as a baby, picture of other babies... you get the idea.  I would just compare and analyze.  It had monopolized my thoughts. 
One month had passed and it was time for the re-check with Dr. Good.  The first few minutes were spent discussing her acid reflux problems and success with her new medications.  I finally blurted out, "okay, let's talk about the head".  Dr. Good smiled, put down Mia's file, looked at me and said, "What do you think, mom?"  I started babbling about how I had an odd shaped head as a baby and when she scrunches up her face it makes it appear worse, and... then I just stopped.  We both stayed silent for a minute.  He knew I knew, but I just couldn't admit it.  So, he in the most loving way possible said, "I think we should get her checked out by a specialist".  I just nodded... and bit my lip to fight the tears.  I squeezed Drew's hand and he squeezed back.  I felt like this was the first step in this long marathon we were all about to embark on.  Dr. Good hugged me and kept his arm around me for a long time and let me just digest the news.  "Ready for the good news?", he says.  "The number one surgeon for the surgery to correct this procedure is located right here in Chattanooga, Tennessee.  He wrote the book on this surgery and has been performing this procedure for over 25 years."  A.K.A. God said "I got this".
Dr. Good got us in the see this amazing surgeon in just one week.  Honestly, I remember having hope that he would walk in and say "she looks fine.  It's just a mild case that will take care of it self.  I don't think she needs surgery."  It went a lot different than that.  He walked it with an entourage of people, looked at Mia, rubbed her head, scribbled a few notes down and said, "I believe she's a surgery candidate".  My heart sunk.. and reality hit hard.  After he left the room, we met Leslie, his nurse practitioner.  She knew we were overwhelmed so she took as long as we needed to answer lots of questions and digest the new info.  She explained as much as we needed to know at that time and then left us with a lot of info to read. 
Drew and I got in the car and just sat there for a while.  No one ever warned us that having kids comes with all this stress too.  But, we knew our God is bigger than craniosynostosis... and Mia Hope had a special purpose on this earth.
Next came the CT scan, also known as the longest 10 minutes of my life.  She did great, and the results just confirmed her diagnosis.  Next we met Dr. Strait, her neurosurgeon.  He went into detail about what would happen during surgery.  It was good for me to hear... Drew hated it.  If he could have put his fingers in his ears and said "la la la la la", I think he would have. 
My health science kids at school surprised me by hosting a blood drive in honor of Mia.  It was a huge success and deemed the most successful blood drive in Hixson High history.  I was humbled by the generosity of over 110 Hixson High students who showed their support for my little sweetheart.
One more meeting with Dr. Sargent to confirm a surgery date and a few more questions for Leslie.  December 9th... it seemed so far away, but here we are.  It's time.  I don't know if I am ready, but I don't think I ever really would be.  My prayer is that God be glorified through this process.  I hope Mia's journey would be a witness to God's love and mercy.  She's one special kid.  Within seconds of meeting her you will quickly draw the same conclusion.  I can't wait to see what God has in store for her life.