Mia,

Mommy and Daddy love you so much. You are doing so good! And you are so cute, we love how you smile at us and laugh at us. Daddy especially loves all your words, it is so good to have them back. You've even been feeding better (with the exception of one feeding today where you threw up...). Last night you even slept for 6 hours, which was real nice for Mommy and Daddy. One of the really cute things you've been doing lately is sticking your thumb in your mouth while drinking your bottle. We pull it out and you put it right back in again...it makes for some real cute noises. God has definitely worked a miracle in your little life and we continue to trust Him for everything.

We love you baby girl!
Mommy and Daddy

A Helmet

Sweet Pea,

Today we went back to LA for some follow-up appointments. You did just fine in the car on the way down. Our first stop was at the ear, nose, throat doctor. She looked into your right nasal canal (the one she had unblocked in March) and said it looked great! You don't need to have a quick fix it surgery because there wasn't any scarring that needed to be removed. In fact, this might be the last time you'll have to have the probe stuck up your nose. She also looked down into your throat and said it was a little red by your voice box, but she didn't think it was too red and so she thought it was ok that you not take anymore zantac for reflux. We were happy to hear that also.

We then went to see the plastic surgeon who had done your skull surgery and he thought you looked great. He was even impressed that you are taking all your food by bottle now! He gave us the address of the place that is going to do your helmet. They've been doing this for years and come highly recommended, so mommy and daddy are encouraged that they'll help your misshapen head.

We drove over to the place and met the owner and his assistant. They are both real nice and have been doing this for years (that's a good thing). They looked at your head and thought a helmet would definitely help. Mommy asked them if they'd even seen a head that looked like yours...and they said they'd seen lots of misshapen heads and given time they could definitely correct yours. So then Mommy asked them how long you would have to wear your helmet and they told her that because your head is on the extreme end of misshapen it might take anywhere from 12-18 months. We're going to pray that it happens sooner, but we'll also be patient and wait on God's timing for this. So after that they scanned your head. We'll be back in a couple of weeks to get your helmet and have them do the initial adjustment. We know that it seems like a long time, but we think it is worth it for you to have a normal shaped head.

Do you notice anything different about your picture today? Yup, you're right...no more nose tube! Mommy pulled it out last night because you are taking everything by bottle. We still have a few more from the hospital in case we need to put it back in, but you haven't used it in a couple of days so we thought it would be better not to have it in (less risk of infection) if you didn't need it!

We love you!!!

Mommy and Daddy

Therapy

Dearest Mia,

You had your first "feeding therapy" today. Mommy and Grandma Cheri took you to see a speech therapist who also works with feeding therapy. She was real impressed with how well you are doing eating from a bottle. She even thought your breath, suck, swallow looked really good considering what you've been through. And she gave Mommy a few pointers to help you, but she didn't think you needed any therapy! Snooky Great! We are going to see her in a few weeks again because Mommy is going to introduce solids to you again and she wants to see how you do with that.

Tomorrow we are taking you to LA to have some follow-up visits with different doctors. They are also going to fit you for your helmet.

We love you sweet pea,
Mommy and Daddy

Tired But Thankful

Being home is real nice. Mia has improved so much since we've gotten home. We've been feeding her by bottle the entire day and night and she's doing great. Each day she gets a little better with her feedings. Since she doesn't take a lot during her feedings we end up feeding her a couple of times at night. It's just like having a new baby again. Hopefully as she continues to gain strength she'll feed better during the day and we'll have to feed her less at night. She also continues to gain strength in her neck and she's been reaching a lot more with her left hand. We are so blessed at her progress, God continues to be faithful. Thank you for praying!

Doing Well

Dearest Mia,

We didn't know what to expect coming home with you. It reminded mommy of when you came home for the first time from the hospital. We were a bit nervous, yet very excited to be home. Well that is how it felt yesterday. Now that its been a day, we are getting into a routine and it feels better. We love you and are so excited with how well you are doing.

You've taken all your food by bottle today. You've been feeding every 2 to 2 and 1/2 hours, taking about 70cc's each time (a little over 2 ounces). Yesterday you had some vomiting issues, but today you haven't vomited at all. That makes us very happy. Last night we fed you through your nose tube with the pump the hospital gave us, but tonight we are going to let you sleep and feed you when you wake up and are hungry. We imagine it will be like when you were a new baby and we might be up every 2 to 3 hours again, but it's ok if you take your food by bottle and don't have to have the nose tube anymore. We'll leave it in for awhile just to be certain, plus mommy says it is really nice for giving you your medicine, we don't have to struggle with you getting it in your mouth.

Sometimes when you are sleeping you start to whimper and it makes mommy and daddy sad. We wonder if you are hurting or if it is just baby nightmares.

You are regaining the strength in your neck again and can now hold your head up pretty good when mommy carries you around on her shoulder. And we get lots of smiles out of you during the day. We love you so much and are so encouraged by how well you are doing. God continues to heal your little body and we are grateful.

Love,
Mommy and Daddy

Home is where the heart is

We made it home! Lisa is more excited than Mia to be home, it's been 25 days since they left. Here is a cute blurb of Mia talking! If you listen real carefully, you can hear her say "hi daddy!" Thanks for all your notes and prayers. Love, the three Sturms.

Our God Is An Awesome God!

Sweetheart,

Today was a really good day for you. The only thing that bummed out Daddy and I is the fact that they didn't let us take you home yet. They wanted to watch you for another day while they increased your feeds a little bit more. Daddy and I decided to be patient, but it crossed our minds to just take you home.

You were tolerating your feedings just fine and seemed a bit fussy around noonish so we decided to try you with a bottle again. We were so pleased when you took 7 cc's no problem! Remember that yesterday you only took 5 cc's, so we felt like you were making progress. Then around 6pm you were real fussy again, so we got you another bottle and this time we were in awe, you took 50 cc's! Yes, 50!!! That is almost 2 ounces. It was so wonderful. We asked the doctors to switch you from continuous feeding to getting your food every 3 hours so we could work on bottle feeding with you. The only sad part was that you did throw up just a little bit after awhile, but it wasn't too much...you might have had just a little too much in your tummy at that point. So three hours later we tried you again with a bottle and you took 54 cc's before you tired out. Since they want you to take 81 cc's per feeding they put the rest down into your tummy through your nose tube. It was so encouraging to see you feeding from a bottle again!

You also started talking again today. You were doing the really cute babbling that you were doing before the surgery started. We loved hearing your voice again.

God continues to work a miracle in your life sweetheart. We are grateful and so encouraged. Thank you everyone for praying, we serve an awesome God who deserves all the glory for Mia's continued progress and healing.

Tonight we want to ask everyone to pray for a friend of yours in the PICU. His name is baby Gabriel. He's going through something very similar to you in that he's had seizures and now has some brain damage. His parents want him to be healed also. We believe that God can heal him just like He is healing you. So please pray for baby Gabriel. Pray that he would see his parents and know them, pray that his arms and legs would work right, and pray that he would learn to suck again and take a bottle also.

We love you all of it sweetheart,
Mommy and Daddy

Baby Eagle Chick,

Daddy and I love you sooooooo much. You are doing so well that the doctors are thinking about letting us go home tomorrow (Saturday)...we know that nothing is ever official until it happens, but we are encouraged that you'll go home with us soon.

Today I got to stick a tube down your nose into your tummy. You were crying before I started and I was a bit nervous because I wanted it to end in your tummy and not your lungs or out your mouth. But I did it and the nurses said I did a really really really good job. And I realized it wasn't that hard and it makes me a lot more comfortable taking you home because I know I could put your tube back in if you pull it out at home.

The nurses told me that last night you were awake for quite awhile and I said, "oh no! She's mixing her days and nights!" So we hope that when you get home you'll sleep at night real well and be awake during the day.

The nurse and I worked on getting you to take a bottle today and you took a little bit (5 cc's), but you still aren't there yet. But it's ok because I'll work with you when you get home.

Daddy showed up tonight to see you and that made you so happy! We can't wait to take you home. After you finally fell asleep, we left the hospital and went to George and Lory's house. They had a bunch of friends over who hadn't heard your story. We started telling them about you and they asked to pray for us. It was such a neat time and it blessed us so much. Daddy said it was like a piece of heaven because it was believers coming together to praise God and give Him thanks for all He's done and continues to do. It made me think of everyone all over the world who continues to pray for you. We are grateful. We serve an amazing God.

We love you sweetheart,
Mommy and Daddy

We own the sky

Dearest Mia,

You did not want to eat anything from a bottle today. The occupational therapist said it was because you weren't used to anything going down your throat. It has been three weeks since you ate from a bottle last. But you used to eat from a bottle 27 times a day, so daddy has no doubt you will do it again! Mommy tried formula, sugar water, and plain water. You didn't want any part of it. Today Mommy was taught how to put the NG (nasal gavage) tube down your nose, since that is how they are currently feeding you. They are threatening to send you home sometime next week. That will make mommy and daddy very happy, but we aren't holding our breath since the last time you were discharged from the hospital (december 20th, 2007), they gave us a whole three hours notice. On a funnier note, somebody asked me today when they are going to try to "suckle" you. Since I worked very hard to not use the word "suck" in yesterday's post, that made me laugh and laugh. I guess where they grew up, babies suckle a bottle.

PS. A doctor today said that your eyes were amazing and you must be the most beautiful baby in the whole hospital.

we love you all of it, Mom and Dad.

Ephesians 3:20-21

Dearest Mia,

This verse has been on mommy's heart for the past week. It says,

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

Mommy and Daddy know that God can heal you and that is what we have been praying for. Remember the verse says "God is able to do immeasurably more than all we ask or imagine." We want you to be whole baby girl. We prayed that you would be completely restored. And God can do SO much more than that. More than your mommy and I asked for or even more than we can imagine. Today, they took the breathing tube out of your nose, and mommy gave you a pacifier. You went to town on that pacifier for two hours tonight! We were worried that you had lost or forgotten the ability to do that. Your mommy was positively glowing today, she was so happy! Tomorrow they are going to give you some food from a bottle, and we can't wait! We are so grateful for how God continues to heal you and we can't say thank you enough! God is so good, baby girl. We love you all of it.

Love, Mommy and Daddy.

PS. They are decreasing the amount of Topamax they are giving her to a half dose everyday. God is able to prevent Mia from having any more seizures. Will you talk to Him about Mia's seizures? She hasn't had any for about two weeks now. Thank you God!

Roll Over

Dearest Mia,

Today you were very unhappy. It wasn't your fault, the doctors didn't feed you anything for the second day in a row except pedialite. That made your mommy unhappy. Tomorrow they said. I say tomorrow never comes. Then your mommy poked me. So we hope and pray they start to feed you formula tomorrow. They turned down the "nose air" to 1 liter per hour, barely anything at all. Tomorrow (there's that word again!) they will turn it off and take that thing out of your nose. Yea!! AND, today, you were rolling from your side onto your back, and mommy said one time you rolled from your back to your side. Snooky great sweet pea! I'm so proud of you! I hope tomorrow is a better day.

We love you all of it, Mom and Dad.

A Tough Day

Sweet Baby Girl,

Today was tough for you. Daddy and I want you to know how much we love you and what a strong baby you are. We wish we could take your place and go through this for you. They increased your feeds last night and you didn't tolerate it...early in the morning you threw up and they cut back your feeds, but you were producing way too much stool again (because they fed you too much!) and so they stopped feeding you formula and put you on pedialyte for the day and on top of that they put you back on isolation...so now I have to wear the scratchy yellow gown when I hold you. So your tummy was hurting this morning when Nana and I got there. They also put a catheter in you because they want to collect urine for 24 hours to give them information about your kidney stone (which you've had since birth and it hasn't affected you yet...). I think the catheter was also making you uncomfortable. At about 1:30 your catheter came out and there was a big concern that part of it was still in you and that it was blocking you from peeing. Thankfully that ended up not being true and you finally peed which made me very happy. I was really upset about the whole thing because this is the 3rd time they've tried and the catheter hasn't stayed in, so I told the doctors that they couldn't do it again...if they wanted to collect your urine they'd need to use a bag instead. It was just too hard for me to see you uncomfortable again. The worst part of your day was when they came to draw blood to make sure you were ok since you'd had a lot of stool earlier. I told the lab lady that she needed to be real good because you were a difficult one to get blood from and that I did not want you to be poked needlessly since you'd gone through so much already. It took her two tries to get enough blood from you and in the process you got so angry that you pulled your feeding tube out of your nose. Nobody blamed you because of what you had to go through, but that meant you had to get another nose tube put in. Nana got to hold you after all of that and you finally fell asleep in her arms. That was real nice. Later you cried every time someone touched you because you thought it was going to be bad and I wished I could make it better. A nurse who keeps track of you came by to see you later and she was so impressed with how well you were doing! She told me that the fact that you are moving both sides of your face when you smile and that your tongue is moving are such positive signs. She was really encouraged. She also said that your cry is a normal angry baby cry and that you were crying because you understood what was happening and she said that is different than a cry of a baby that doesn't understand...so she said that was real encouraging also. The best part of your day came in the evening when Daddy and Aunt Laura (aka Aunt Goose) and Grampa Flash came to see you. We were sad to see them go, but know that we'll see them soon. I finally got you to sleep and left myself, but I always come back. Mommy and Daddy always come back. We love you baby girl!!!

Love always,
Mommy and Daddy

...

Please pray for Mia's feedings, that she would tolerate the formula tomorrow and get to a level they would be happy with. Please pray for them to get rid of the room air blowing in her nose, we are so close...the respiratory therapist said her pneumonia is gone, her lungs are clear, but they are still weaning her very slowing from the air. And please continue to pray for her tolerating less seizure medicine. And then also pray for continued healing. And wisdom on the part of the doctors. Thank you thank you thank you for praying, it means so much to us. God is faithful and continues to be so gracious and good to our sweet baby girl.

I love you little Baby

My dearest Mia,

Daddy was so excited to see you this weekend! He wishes everyday could be Caturday. Mommy and Daddy celebrated their 4th wedding anniversary on Friday, May 16th. We enjoyed holding you, and singing to you, and I'm pretty sure Mommy was dancing with you at one point. The song in this video is "Eagles" by Terri Hendrix. She is talking about "I love you little baby" and, of course, eagles. I'm pretty sure this song is about you, Eagle Chick! Your mommy and I met with the anesthesiologist today for a couple of hours, and he talked us through what happened from his perspective. It was good for me, and we learned that your brain was already pressing up against your skull when they opened you up. So it turned out to be a very good thing we didn't wait to do the skull surgery for months and months. God was and is in complete control of this situation baby girl, and we are so glad you are looking better every day. Mia, you are doing SO good. A nurse from last week in the PICU saw you today and she was pretty amazed at how you are looking around and grabbing things. If you could get that oxygen thing out of your nose, and think about eating from a bottle, we would love to take you home!

All our love, Mom and Dad

John 16:33

Dearest Baby Eagle Chick,

You had a really good day today! Daddy and I got to the hospital to see you and you were so awake and alert. You got a bath and your nurse changed all your sheets on your bed. After that you were sleeping nice in my arms when one of your doctors came to visit. He said, how's my little cutie...and then he started poking you a bit and I said, she's really tired...and then he kept on touching you and trying to get you to grip his hand (which was not going to happen since you were sleeping!) Anyway, afterward Daddy said, why didn't you tell him to not touch her and I said, I did...I told him she was really tired, of which Daddy said, that doesn't work with guys, you have to say, don't touch my daughter, she's sleeping. We laughed a lot about that...someday you'll understand when we tell you that boys and girls think and communicate differently!

We no longer have to wear yellow gowns with you because all of your stool tests came back negative, which is really great...it means you don't have a bug in you. They also have cut back the flow of oxygen in your nose...it's almost 1/2 way done...hopefully in another day or so you'll no longer need the oxygen. They weren't able to put an IV in you, so right now you are IV less because they took out your central line. They don't need an IV right now, but they had wanted one just in case, but we'll pray that you keep getting better and don't need one at all.

You were so alert today, it was real neat. You were putting your hand in Daddy's mouth like you used to do before the surgery and you were real focused on all the toys that we played with you. It really encouraged Daddy and I on how well you are doing. We know that God is healing you and we continue to pray that He will restore you completely.

Tomorrow they are decreasing your seizure medicine, so we are praying that you handle that well. The other positive is that you've been letting us put your pacifier in your mouth, so we are continuing to pray that you'll remember how to suck and swallow. We definitely see progress with that though.

We love you eagle chick. Daddy and I will see you tomorrow!

Love always and forever,
Mommy and Daddy

Sweet Pea,

Daddy and I love you so much. You had a much better day today. You are tolerating your feedings much better and you only threw up a little bit one time. Your stool output was much better today also. And your lungs are sounding better and better. You no longer need extra oxygen, but they are still blowing extra "room air" into your lungs...when they finish decreasing that you'll get rid of that tube in your nose! The nurses could tell that you definitely want to go home. You keep trying to pull off everything that is attached to you. And your IV pulled out tonight and so they are going to have to put another one in you. Daddy and I stayed a long time waiting for it to happen, but we finally decided we needed to sleep and we didn't know when they would get it done. We are praying that they'll get it on the first try and it will last a long time. We love you sweet pea and feel like we are so close to getting home. Tomorrow they are going to lessen another dose of your seizure medicine, so we'll be praying that you tolerate it also. Tonight when we left you, you were sleeping so peaceful with your hands crossed in front of you...it looked just like you were praying, it was adorable. We can't wait to see you in the morning!!!!!

We love you!!!
Mommy and Daddy

Dearest Mia,

This picture of you is several weeks old, but it shows how cute you are hanging on to Mommy! Mommy told me that in the morning they put dye in your bladder to see if you had reflux in your kidneys, and you didn't! That was snooky great! That means you won't have to be on the antibiotics when you go home. Your coughing sounds much better too. After that, your day wasn't so great. The doctors were concerned that you're pooping too much, and that you have a bug. So they put you in the corner by yourself and now Mommy has to wear a disposable yellow gown when she holds you. Your tummy also started to hurt this afternoon and your threw up a lot a lot all over mommy. They don't know why your tummy hurt or why you threw up, but they are changing your feedings back to every 3 hours with less food instead of every 4 hours with more food. You still need oxygen but less of it. You had some special visitors today, Galen and Lita came to see you. They thought you were pretty cute even if you weren't feeling well. Your friend baby Naomi did not get a liver today because they couldn't split it. So we need more prayers for baby Naomi and a new liver. Daddy loves you very much and he will see you tomorrow when he goes to the hospital. As they say in veggietales, God made you special and He loves you very much! We love you all of it,

Mom and Dad

Sweet Baby Girl

Sweet Baby Girl,

Mommy and Daddy are so proud of you! You are doing so well! Your pneumonia is going away, the respiratory therapist said you sounded really good today and hopefully by tomorrow it will be gone. You've also been tracking a lot better and focusing on Mommy and Grandma a lot more, we are so encouraged by this. You still need to work on sucking though, you don't like having the pacifier in your mouth. They tried giving you a tiny bit of food in a bottle, but you didn't take it. We keep praying that you'll remember how to suck and feed. One good thing is that you've been putting your thumb in your mouth a lot, so even if you don't take a pacifier, we hope you'll start sucking on that thumb of yours...Mommy has never wanted you to suck on your thumb more! Last night Stacy gave you a CD of animal songs that are really fun and today we played that a lot and you loved having Mommy sing to you...you would stare at me and smile, you really liked the song about Goldilocks and the Three Bears...and the song about Monkeys jumping on the bed...Mommy would sing it to you and say, "No more Mia's jumping on the bed!" and you really liked that. Tomorrow they are going to lessen one of your anti-seizure medicines so we'll be praying that you don't need it and don't show signs of seizures (they told Mommy to look to see if you were less alert or sleeping a lot more, those would not be good things). And you still have oxygen in your nose, but they are working on getting rid of that also. We love you so much sweet baby girl, Mommy and Grandma will see you in the morning!

Love always,
Mommy and Daddy

...

Please pray for the following things...pray that Mia's pneumonia will be completely gone tomorrow, there was definitely marked improvement today and we are thankful.

Pray that she tolerates the lower dosage of seizure medicine and that sometime we would be able to completely take her off of that.

And please pray for another baby in the same room as Mia. Her name is Naomi (not the same Naomi from the NICU, a new Naomi). She is in need of a liver transplant and there is a possibility for her to get one tomorrow morning, so please pray that it goes well and that her body accepts it.

God has been so faithful and it is so neat to see Him working right before our eyes. We serve an awesome and powerful God, thank you for continuing to be faithful and pray for Mia and these other babies!!!!

Sweet Pea We Love You!

Sweet Pea,

You had such a good day today. When Grandma Cheri and I got to the hospital to see you we were greeted by one of your nurse's from the NICU...she was going to be in charge of you. She told me that sometimes they float up to the Pediatric Floor and help out there. She thought you looked real good and was so impressed with how big you've gotten! She was the nurse in the NICU who did some baby massage on you and towards the end of the shift we bathed you and did baby massage with you...you really liked it.

Occupational Therapy and Physical Therapy came to see you today and they were both very impressed with how well you are doing. They love all of the movement and were very encouraged with how you were tracking some of the objects we put in front of you. We worked a little bit on holding your head up...I am sorry to say it is weak again since you've been in bed for almost two weeks now! We'll have to work on strengthening that again. We also worked on stretching your left arm and your legs and they really liked the "tone" they were feeling when they stretched your muscles. And then we worked on the pacifier and sucking, but you just want to bite it...you aren't into sucking it yet.

I got to hold you a lot today and you gave me quite a few smiles. That made mommy very happy. Can you see me and do you know what your looking at? Sometimes you focus on me and I feel like you are really there...the same baby from before the surgery and then sometimes you just sort of fade out until I get your attention again. We will keep praying that you do know who we are and not fade out.

Grandma Cheri and I got a real treat when another NICU mom came to visit us, her name is Stacy. She got to see you baby girl and was real excited about how good you look! Her son Levi was in the NICU for awhile while we were there...he's doing real well also. Anyway, she brought us dinner to the hospital and that was so nice!! Her son Dylan was so kind to make us cookies and share them with us...I can't wait to make cookies with you sweet pea!

We love you sweet pea!!!

Mommy and Daddy

....

Please pray for Mia's pneumonia. It is still lingering and rather uncomfortable. They've been giving her asthma treatments to help with it, but pray that it will completely disappear.

Pray also for consistancy with reducing the amount of oxygen she is getting. There is a lack of communication in regards to this and it is rather frustrating. Pray that I'll be able to voice my concerns to the appropriate people and that it will get resolved.

And pray also for Mia's sucking ability. That will be the next big hurdle for her. I know it is possible, pray that I would have patience as we wait on God's timing.

I really want everyone to be encouraged, Mia is doing so well and each day we see improvement which we can only contribute to God and we want to remember that and give Him all the glory.

Happy 7 Months Mia!

Dearest Mia,

It's hard to believe, but you are 7 months today! My how you've grown! Today lots of different things happened for you. You were doing well enough that they said you didn't need to be in the PICU anymore, so they moved you into the infant room on the floor. It's kind of like when you were in the NICU...there are 4 cribs and a nurse and an assistant to take care of the babies. It was really hard for me to leave you baby girl, but you were sleeping so nice and know that I'll be back real soon!

You still have your pneumonia, so we are praying that it will get cleared up real soon. That is what is pretty much keeping us at the hospital. You also haven't been sucking real well, but Grandma Cheri got you to take your pacifier twice tonight, so we are real hopeful that if we continue working with you it will become real familiar. The doctor told us though that they would need to do a swallow study on you when you were ready to take a bottle just to make sure that your feedings go into your tummy and not your lungs...apparently that is a brain function. So we will be praying for that sweet pea!

They are also weaning you off of the oxygen in your nose and you are almost to the point of room air, which is really good...maybe by tomorrow that will go away.

And Grandma and I got you to smile quite a bit today, which was real nice. We continue to be so encouraged that God will continue to heal you and help you recover. In my mind I keep thinking how science says no, but God can say yes because He created science. We remain hopeful and thankful for how well God has already taken care of you.

Daddy and I love you so much!!!!

Mommy's Day

Sweet Baby Girl,

God gave me a beautiful gift for Mommy's day. He gave me you. And on top of that, you got your breathing tube out today! It was such a happy moment for daddy and I. You are still getting a little bit of oxygen through your nose, but they will slowly wean you off of that also. You still have stuff in your lungs also, but that is getting better and not having the tube down there will help also.

You had lots of visitors again today. One of them is a dear friend of George and Lory's who we met for the first time last night. Her name is Wei and she heard about you and has been praying for you and was excited to come and see you. It is so neat how the body of believers works, your daddy and I continue to be humbled by how many people are praying for you.

Grampa Flash and Nana and Grandma Cheri also came to see you. And then Greg and Joy happened to be in town again and they stopped by to see you also. You had quite a busy day! Daddy and I got to hold you a lot today and it was so much easier without the breathing tube. We're just so thankful for how well you are doing. We know that God can heal you and we continue to pray for that!

They tried to feed you out of a bottle today, but you didn't like that. They told us it is not uncommon because you had a tube in you for so long...not to mention you don't want anything in your mouth because it was uncomfortable when the tube was in there. So we'll continue to work with you on that and pray that you'll quickly get readjusted to feeding from a bottle.

We love you baby girl and can't wait to get you home!

Mommy and Daddy

Dearest Mia,

Daddy and I love you so much. And yet, God loves you so much more than that. Last week Saturday was a very hard day for us, but each day gets better as God continues to do an amazing work in your life. We are encouraged by little things each day. We know God has a perfect plan for your life and we still continue to pray for complete healing, but regardless of the final outcome we know that God is faithful. And we want to continue to praise Him and give Him all the glory.

Today you had some visitors. Greg and Joy and Doug and Holly. They all thought that you looked so good! You were falling fast asleep at one point and Greg tried to let go of your hand, but you had such a tight grip and you wouldn't let him. We think you may have gotten stronger since you've had the breathing tube. In fact, you keep trying to take it out (which may happen tomorrow morning...we'll be praying that it does baby girl!) and at one point I was holding your right hand and Joy was holding your left hand and I saw your the tape on your tube start to stretch and I said, "oh no"and the nurse came over and you were using your foot to try to get your tube out! There is tubing that goes quite aways down from your mouth and you were pushing your foot against it in hopes of getting that tube out.

Today someone came by and hung a mobile up for your to look at and you really enjoyed that along with the shapes from last night. When Doug and Holly got there they were so impressed with how you were looking at everything. We keep praying that you'll understand what you see...but it sure seems to look like you can see things, which is very encouraging.

Later when Daddy and Greg were in with you Daddy got you to smile! He said some things that he used to say at home and you gave him a couple of smiles...which was so neat!

Baby girl, we are praying that the stuff in your lungs (a mild case of pneumonia) would be healed and that you would get your breathing tube out and that God would completely heal you.

We love you Sweet Pea!
Mommy and Daddy

Sweet Pea,

Daddy and I love you all of it. We know you really want to get your breathing tube out, but you're just not ready. You still have a lot of stuff in your lungs, but it is getting better. They think that maybe by tomorrow evening, they might take it out...that would be the earliest. You just have to be patient.

They told us you haven't had anymore seizures in a few days, so we are very grateful for that. It looks like the anti-seizure medicine is working and is something you can go home with.

You had some visitors today...your Aunt Amy came down to see you and your Grampa Flash and Nana were there too. They all were very excited to see the baby blue eyes of yours.

I also got the nurse to hang some things up in front of you so that you have something to look at and you seemed to really enjoy that.

We love you Sweet Pea...we're so proud of you...you're one tough cookie!

Love always and forever,

Mommy and Daddy

P.S. Your neurologist today examined you and said "she might just surprise us" because of how well you are doing. We know it is a God thing and we're going to keep praying for healing and let Him get all the glory.

One Week

My dearest daughter Mia,

It's been one week since your cranial vault surgery. We got some news that wasn't great, you have the beginning of pneumonia in your lungs, probably due to the breathing tube down your throat for the past 7 days. So, the doctors changed which antibiotics they are giving you. And the neurologists classified you as having cerebral palsy. But it is very early in the game, and God knows how the game ends, so we are going to wait and see what God will do! It really made us jump for joy when you opened your eyes wide today! Take a look!



Sometimes you looked right at us, and other times you looked past us, but we were very happy to see your beautiful baby blues. It will be a few more days before the doctors are satisfied with the health of your lungs before they pull that breathing tube out. I was disappointed. But this picture is less than one day old and it's already out of style because they took the EEG sensors off your head today! Yea! I also took this very cute video of you. Notice your "ballerina slippers" that say Twinkle Toes on the bottom of them, and your oh so cute tongue movements!





We love you all of it, Mom and Dad

Sweet Baby Girl,

Daddy and I are so proud of you! We know how much you wanted to get rid of your ventilator today and we are so sorry that it hasn't happened yet. But the doctors want to be safe and sure and so they are waiting until tomorrow...maybe. They told us that you are doing really well breathing over the machine, but the CO2 in your blood is a little on the high side and you may have an infection starting in your lungs, so they are watching those things before they take the breathing tube out. Daddy and I are praying that you don't have an infection and that they will take the tube out tomorrow, but we are also being patient.

Your nurse today was so nice! She let us hold you all day long, which daddy and I really loved. Your doctor also really liked how you were opening your eyes and kicking your legs and right arm. We just keep praying and so far you keep showing everyone what a fighter you are. You haven't had anymore seizures in awhile and they have changed you to a different long term seizure medicine that is better for you. They are going to watch you tonight to make sure it is working and then they might take those electrodes off your cute head. That would be really nice!

Your central line is also working really well and that was a relief to daddy and I because we don't want them to poke you anymore than you need. Sweet baby girl, we love you so much and continue to thank God for everything He is doing in your little life. We can't wait to get you home!

All our love forever,
Mommy and Daddy

Sweetheart

Sweetheart,

You have got to be the cutest baby ever and no, we are not biased...but Daddy and I love you very very very much. You had a good day today and we are thankful. We got there in the morning to see you and couldn't go in because another child was being worked on, so daddy and I talked to your nurse and she said you were sleeping and so we waited outside until we could go in. We just wanted to see you and hold your hand and tell you how much we loved you. When we got to go in they told us you were going to "sprint". They were going to put the ventilator on back-up and see how you did breathing on your own for an hour. You did great! We were so excited...that meant you were one step closer to not having a breathing tube. I asked the nurse when I could hold you and she said in a bit, so I waited patiently...first she wanted to give you some blood because some of your blood counts were low...and then she wanted to wait until you "sprinted" again...which you did great the second time also! So I continued to wait patiently...and she kept promising me I would get to hold you...and then she wanted to go to dinner and after she came back and assessed you again, she finally let me hold you at 6:30!! I was a little bit upset because I love holding you and wanted to hold you longer than 30 minutes, but I will take whatever time they give me. When they put you in my arms you opened your eyes and looked at me for a little while. Daddy and I were so excited...we don't know if you understand who we are, but we feel like when we hold you everything is better...you calm down and relax and it is like you know who we are, so we hold on to that hope. And we continue to pray that God will restore you if it is His will. Nothing will ever change how much we love you!

During the afternoon another mom who has a baby in the PICU came and talked to us. Her baby also has a damaged brain, but it is more serious than yours. She is a strong christian and wanted to give us a book to encourage us. She is such a neat lady and it seems like God has placed her there to help us and other families in the PICU. So daddy and I are praying for her baby also...Eme.

After the shift change, your night nurse let daddy hold you also for another 45 minutes. You relaxed in daddy's arms and were sleeping so peacefully when he finally set you down. We love you sweetheart and even though it was hard to leave you, we know we'll get to see you in the morning and that makes us so happy!

Love, Mommy and Daddy

.....

Please pray for Mia's central line...it wasn't working the other day and then it was working and tonight it was barely working...it's the only line they have in her and she's so hard to get an IV and we don't like to see her poked, so pray that it would start to work well again! Thank you so much for praying for our little girl!!!! And thank you for all the notes of encouragement, they mean so much to us.

Oh...we also found out this morning that she hasn't had any seizures in the last 24 hours, so that means the medicine is working...they are switching one of her drugs so they'll continue to monitor her until they are sure she is at the appropriate level to control the seizures.

Baby Eagle Chick

Baby Eagle Chick,

Mommy and Daddy love you so much! We started calling you baby eagle chick months ago in the NICU when Daddy said, "doesn't she look like the cutest baby eagle chick you've ever seen?" It was your hair that made you look like a cute baby eagle chick...and it has stuck ever since, so that's why we call you that. We came to see you this morning and you were awake. You were trying to get your hand up to your mouth to pull your ventilator out because you didn't like it. So we had to take turns holding your hand so you wouldn't pull it out. They lowered the ventilator machine and you were breathing on your own on top of it, so they are going to try to get rid of it tomorrow! We know that it will make you really happy when you don't have that anymore. After that we had to leave you for a little bit because they tried to put a PICC line in you because your central line had started to leak. We didn't want to leave you, but we knew that we would see you soon. They weren't able to put it in and they didn't want to poke you too much so they only tried a couple of times. They then wanted to work on your central line to see if they could fix that and we were so thankful when they did. Baby eagle chick, you are such a trooper and a fighter, we wish that it was us that was hurt and you were still whole. But we continue to trust that God has a plan for you and that He can still heal you. During the afternoon, mommy took a nap and daddy and Grandma Cheri stayed with you. The anesthesiologist from your surgery came by and had just found out today what happened. He was so sorry and told daddy that he would pray for you every day. We were glad he came. Later, you were opening your eyes quite a bit and they were talking to you. Daddy started making funny noises, like the ones we did before the surgery at home, and you would get real still and listen. That was encouraging to us. We continue to pray for you all the time eagle chick and our prayer is that God would heal you and that you would be able to see us and recognize us. There are lots of people all over the world praying for you and we continue to get notes that encourage us also. We love you so much!

Love, Mommy and Daddy

Sweet Baby Girl

Sweet Baby Girl,

You know how much your daddy and I love you. Today was another really tough day for us. We woke up early and got ready to see you. Before we left Pastor Roger phoned us and told us that the whole church would pray for you today and we were very thankful. When we got to the hospital to see you they told us that you hadn't had a visible seizure since last night, but they wanted to run a long EEG test on you for 24 hours to be sure the seizures were under control. So they put those electrodes back on your cute head, but this time they glued them down. I got worried that the glue would hurt when they took it off, but they assured me that they have a special liquid to remove them. And then I felt better. A neurologist came to talk to us then about your MRI and she was not very positive. Your daddy and I got really sad when she said that a lot of your higher learning functions would be severely impaired and that she didn't think you would be able to see. She said you should be able to breathe and eat and smile and laugh, but she didn't think you would be able to do much else. But your daddy and I know that God is so much bigger than this and we believe that you will be able to overcome this. And then we were encouraged later by other doctors who told us that babies have an ability to compensate for damaged brain matter that older people don't have. And we are praying for that baby girl because we know that God can heal you if that is His plan. Later during the day I got to hold you again for a long time and it was so nice, you were sleeping so peaceful and so content and then daddy came in and said, "when do I get to hold my baby girl?" and so daddy then held you for a long time...you really liked that too. Grampa flash was there and so was Nana and Grandma Cheri. Galen and Lita came to visit you and so did Aunt Dorothy, Uncle Jarrett, and Uncle Paul...there were others who wanted to come, but we told them to wait because we'd had a lot of visitors. Later one of the doctors from neurosurgery came and looked at your EEG and said that you were still having seizures even though they weren't visible, so they were going to change your medicine to make it better and then before we left tonight you had one more visible seizure. We love you baby girl and don't understand why this is happening, but we know that God is still taking care of you and we are trusting in Him.

All of our love forever,
Mommy and Daddy

P.S. The nurses adore you and keep talking about how cute you are...we know!!

To Mia

Dear friends,

I'm going to share a little secret with you. We have been writing this blog for our daughter, so when she is old enough to understand, she will have a record of what happened to her. So tonight, I'm going to write this post to Mia.

My dearest daughter Mia,

Your mother and I love you so much. You are the light of our lives! Today is the third day after your cranial vault surgery. Your mommy called the hospital at 6 am to see how you were doing during the night and they said everything was fine. We arrived at the hospital and went to see you on the third floor, in the Pediatric Intensive Care Unit (or PICU). When we went inside the PICU, there were lots of people gathered around your bed. The attending doctor in charge told us that you just had a small seizure, and they gave you some medication to stop it. We didn't know why you were having seizures, since you had never had them before. The doctors scheduled different tests for you today, to find the cause of the seizures. First they put all these little sensors on your cute head, 28 of them I think. Then they listened and watched the electrical signals your brain was making. During this EEG test, you had another small seizure, but the doctors thought it was a positive thing so they could graph what your brain signals looked like during a seizure. After waiting for hours, they took you to the bottom floor of the hospital to give you a MRI test. This test gave the doctors many pictures of your brain. They were looking for fluid or blood or something touching your brain that wasn't supposed to be there. We went down to the cafeteria and waiting impatiently for them to bring you back to the PICU. You were brought back to the PICU about 5:40 PM and your mommy and I were unhappy the nurse didn't call us on our cell phones like she had promised to. You had another seizure while downstairs for the MRI test, that was the 7th seizure you had today. We asked about the results of the MRI test, but they said the doctor in charge would talk to us after the shift change for the nurses. So, at 8 pm, when the shift change was over, we went back into the PICU, and the doctor in charge asked us to go into this small room so we could talk in private. I was scared, because I knew that doctors don't take you into private rooms to tell you good news. The doctor in charge said the MRI showed that on Thursday, when you were having the skull surgery, someone made a mistake and didn't give you enough fluids to replace what you had lost. So your blood pressure went down, and that triggered the irregular heart rhythm. Your heart was out of rhythm for somewhere between 2 and 10 minutes, they don't know how long for sure. But they do know that some parts of your brain were deprived of blood for some time, and that caused damage to your brain, just like if you had a stroke. They don't know how much damage, we have to wait and see if you can breathe on your own, if you can see, lots of things. Sweet Bunny, we love you so much and we cried and cried and cried when the doctor told us about the damage to your brain. We wanted our little girl back, and we don't know if you will be the same. But God knew, in eternity past, when you would be born, when you would have all your surgeries, and that this would happen to you. He was not surprised or shocked. God has a perfect plan for you! His plan doesn't make sense to your mommy and I, but we trust God with all of our hearts. His plan is better than our plans, and God loves you even more than your mommy and I. After we cried for awhile, we told Grandpa flash and Nana box, and they listened to the doctor tell them the same thing she just told us. Then your mommy asked if she could hold you. The nurses helped move all the tubes and wires and mommy held you in her arms and rocked you in a rocking chair. Your heartbeart and breathing got relaxed when mommy held you, and the nurses said you were doing great. Then we kissed you goodnight, and we when to George and Lory's house to write this post and go to sleep. Tomorrow is Sunday, and we will go back to the hospital and see the MRI pictures and have more explained to us about your brain. Sweet Bunny, nothing will ever change how much we love you and want to hold you and kiss you. We love you all of it, Mom and Dad.

Thankful

God has truly blessed us today and taken such good care of Mia, we are very thankful. She continues to do really well and her swelling is still very minimal! She's not out of the woods on that though as she'll continue to swell for another day and a half, so please keep praying for that.

She had a CT scan this morning and it came back normal. And she continues to kick her left leg and we've seen her move her left arm when the tubing isn't on top of it. Again, we are thankful.

We got the results back from her kidney ultrasound and it looks like she has a kidney infection, which is why she got her bladder infection again, so they are working on treating that. The good news is that they should be able to treat it with antibiotics and she shouldn't have anymore problems with it after, so there doesn't appear to be any permanent damage...thank you God! Please pray for continued wisdom of the doctors and healing of her kidney. She also has a kidney stone, but we need to get further information from the doctors on whether or not anything needs to be done with that.

She did get a slight fever today and they gave her some tylenol for that, but they weren't surprised considering everything she's been through. Right now they are just letting her body heal naturally and watching her temperature to make sure it doesn't go too high. She also did get one dose of pain management, but she hasn't appeared to be in very much pain at all. Once again we are thankful.

Her next big hurdle tomorrow is to get rid of her breathing tube, so pray that it goes smoothly and she's able to breathe just fine on her own...we aren't anticipating any problems, but one can't pray too much!

As you can see a lot has happened today and we are just so thankful with how well she's doing, God is so good!

Prayer is Powerful

Mia is doing great. We were concerned about her left side, but not anymore. She's been kicking her left leg like crazy and she's been moving her left hand a bit. They think she isn't moving her left arm because the tubing from her ventilator is lying on it and her central line is in her left shoulder area and they think it's just uncomfortable to move it.

Her swelling is so minimal at this point which is great. They said she could still swell more by tomorrow or the next day, but keep praying because it's working! And they just gave her some pain medicine...she hadn't needed any since last night, which is amazing...but they just gave her a little bit now because her pulse was a bit higher and her pupils a bit dilated (that's how they know if babies are in pain...they check those things...).

Anyway, she's doing great, she's resting and we're waiting to hear back from her kidney ultrasound to see if there is anything going on there.

Update

We just talked to the PICU this morning and Mia continues to do well. The night nurse is concerned because she hasn't been moving her left side as much as her right side. She's moved her left foot a little bit and she hasn't moved her left arm at all, so pray for her left side please! She hasn't swelled much more yet, but please continue to pray for that also because she'll continue to swell for two more days. We'll update you further when we can!

A Perfect Stranger

Sometimes it's nice to know the end before you hear the whole story. Let us just tell you to begin with that Mia is doing really well. Now we can share the entire day with you...be prepared for a long blog! But also, God is so good and we can't praise Him enough!

We arrived at the hospital early and began going through all the preliminary paperwork/checks with the pre-op staff. The doctors came by and everything looked just fine until the anesthesiologist stopped by and was concerned with Mia's blood work. Her potassium was too high on one of her blood draws and he said that he wouldn't put her under if it still was because it can cause complications, especially with her heart condition. So, he said he needed to get an IV in her while she was awake in order to do a blood draw and check her potassium levels. You all know how hard it is to get an IV in her, much less when she is awake...and hungry at this point. But 5 pokes later we got an IV started on her and they were able to draw blood and send it to the lab. It came back that her potassium level was fine and so everything was a go for surgery. So we left her at 8:30 and they told us it would be about 6 hours.

We then went upstairs to the waiting area and were rather teary (we always are when we leave her at the Operating Room door). And this complete stranger stops us and says, "girl are you ok?" And she went on for quite awhile about how everything was going to be ok and how God is in control and it's nice to know that we win the battle in the end. Needless to say, both Brad and I thought she was an angel...kind of a crazy one, but sent to encourage us at that moment.

At around 11, we got a phone call from the OR that they had finally finished putting in IV's and were ready to begin the surgery. They told us it would be about 4 more hours before she was finished. We kept look at the clock as we approached 3pm...and then 3:30...and then 4pm...finally we went and asked them to call down to the OR to see what was happening. They told us she was already upstairs in the PICU (Pediatric Intensive Care Unit) and that we could go and see her in about 20 minutes. That was strange because normally they call you right after she's done with surgery and let you know how things went. A few minutes later her doctor called down and told us to come up so we could see her and he'd talk to us about the surgery.

So we went upstairs, very anxious to see our baby girl and find out how everything went. The first thing he says is that the surgery went very well, but at the end of it they had a little "blip". He was wrapping her head and her heart beat dropped low and she had what he called an arrhythmia. (It's an irregular beating of the heart.) They ended up doing chest compressions on her and zapping her with a defibrillator once. He called it a V-Tach. (Ventricular Tachicardia). Apparently her heart was pumping irregularily and it required assistance. This lasted a total of two minutes and then she was fine. Her cardiologist came and saw her and said her heart looked fine, so they weren't sure what caused the arrhythmia. The only thing they could think of was that her blood was rather acidic and maybe that had something to do with it.

Needless to say, she arrived at the PICU and they are still running tests trying to figure out what happened. They are going to look at her kidneys and make sure everything is ok there. When we finally saw her she was really pale and unresponsive. She was also super cold and they couldn't get a blood pressure reading from her. It took them until about 7pm to get her looking better and it was rather scary for us to watch this all happen. But they ended up giving her more fluid and working on the imbalance of ph in her body. Her blood sugar level was super low-47...so they ended up giving her sugar also.

We came back at 9pm (they always kick us out for the nurse/doctor shift change) and she was looking really well. Her color was back, her temperature was normal, she was making some movement with her hands/feet/mouth. We were so thankful. She is still intubated (she has a breathing tube) and they'll probably take that out tomorrow and then they'll ease her into the food thing after that, but right now they are just keeping her comfortable as she rests after her big day.

How did the surgery go...excellent, the doctor was so please with the result which is awesome. She didn't require very much blood at all, which is almost unheard of considering the type of surgery. Everything went so well. We know that's because of everyone praying!! And even though she had a "blip", God took care of her even then.

Please continue to pray as she'll swell more during the next 48 hours. Pray for quick healing and answers to the arrythmia. Pray also for wisdom and care on the part of the doctors and nurses. And we will continue to give God the praise and glory He deserves!