Madison's Birthday:

June 8, 2010

From the Word:

"Before I formed you in the womb I knew you, before you were born I set you apart." Jeremiah 1:5

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14

Thursday, October 14, 2010

Madison's Dedication Pictures

As promised, here are pictures from Madison's Baby Dedication on September 26, 2010.


Brother Joel Wood dedicating Madison. He said the verse that came to mind when he thought about Madison and her miraculous story is Romans 8:37 "For we are more than conquerors, through Christ who loves us so."
Daddy, Mommy, and Madison
The whole family! (from left to right) Uncle Stacy & Aunt Marilyn, Mayci, Granddaddy T, Nana & Granddaddy, Daddy, Mommy, & Madison, Grammy & Granddaddy, Dalton, and Aunt Diane. To sum up...a whole bunch of people who love Madison and have prayed for her for so long.

Friday, October 8, 2010

The Peanut Eats Cereal

Getting excited about eating cereal!
Ummm...cereal...good!
videoVideo of the event!

Thursday, September 23, 2010

Madison is being Dedicated!

One of my favorite stories in the Old Testament is that of Hannah, a once barren woman who prayed faithfully to the Lord to bless her with a son. Her account is recorded in 1 Samuel ch. 1.

Hannah said to the Lord, "O LORD Almighty, if you will only look upon your servant's misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life." (vs. 11)

The LORD remembered Hannah and she conceived and gave birth to a son and named him Samuel, which means "Because I asked the LORD for him." (vs. 19-20)

And as she committed, when Samuel was weaned, she took him to the house of the LORD and presented Samuel to the LORD. While there, Hannah spoke to Eli, a Jewish high priest and said, "I prayed for this child and the LORD has granted me what I asked of him. So now I give him to the LORD. For his whole life he will be given over to the LORD." (vs. 24-28) After this Hannah prayed a beautiful prayer (1 Samuel ch. 2).

What a testimony of God's graciousness to reward Hannah for her faithfulness. Children are a gift from the Lord and it is clear that Hannah grasped what a gift she had been given in Samuel. God entrusts children to us as parents while we live here on earth. But Dustin and I know full well that Madison Grace belonged to the Lord before she was born to us. He knew her before He formed her in "the secret place" of my womb (Psalm 139:15) where she was fearfully and wonderfully made (Psalm 139:14).

For this reason Dustin and I know that dedicating Madison to the Lord is a demonstration of our understanding that she belongs to the Lord first and that we commit our lives to teaching her the ways of the Lord while we have her this short time on earth.

This Sunday, at our church, Stevens Street Baptist, Dustin and I will stand before hundreds of people who have been praying for Madison long before she ever arrived, and dedicate her to the Lord. It will be a time of great joy for us as her parents but we know that her dedication is meant to challenge us to "train up our child in the way she should go, so that when she is old she will not depart from it." Proverbs 22:6

On Sunday, in a small way, I believe I will feel like Hannah did. Having a baby had long been the desire of my heart when the Lord finally blessed us with Madison. Just as Hannah, I had prayed for this child and the LORD granted me what I asked of Him. And that is why will we dedicate her on Sunday.

I look forward to Sunday with great anticipation as we share such a blessed day with our family and church family. Those of you who read our blog that are not a part of our church family, let me remind you of something Dustin said in a past blog:

Family goes beyond being blood relatives. If you have ever cried for Madison, prayed for our family, brought us a meal, traveled to Nashville or Cookeville to see us, or met any need we had, you are family. We have been provided for by hundreds of our family members. We love each and every one of you!

So while many of you will not be present on Sunday to witness Madison's dedication to the Lord, we will still be sharing the day with you. Thank you for your continued prayers for our little family. Know that you are loved and prayed for in return.

Can't wait to post pictures of Sunday's occasion. I know I will be one proud momma!

Love always,

~Mandy

Thursday, September 2, 2010

Pictures of the Princess

Madison posing (and I mean really posing) in her Delta Zeta-inspired bubble given to her by Lee Lee (Aunt Amanda's mom).
Apparently the movie "Divine Secrets of the Ya-Ya Sisterhood" was a total bore for Madison. Snooze-fest!
Madison in an authentic, from Graceland, Elvis onesie. Is there any doubt she is Mommy's baby?

Monday, August 9, 2010

She Smiles!

Just had to post the picture I took of Madison smiling. She's really been smiling a lot lately and seems to be a happy baby...until you change her clothes or she gets hungry. I know every baby smiles but considering this is our first and we've never experienced it, we simply melt every time she does it. And they're beginning to be followed by the sweetest little cooing noises. Every day as Madison's mommy brings me increasingly more and more joy!

~Mandy

Thursday, August 5, 2010

Questions and Answers

I've been told by several people that we don't update the blog enough so I wanted to post a little something in the way of an update. In all honesty, in looking back over our blog I've realized that we've made the majority of our posts prior to or following an intense or troublesome time regarding Madison. And while blogging during those times has been an outlet for us to express our feelings, let everyone know the current issues, and ask for prayer I now realize that I don't have to wait for an earth-shattering moment to occur in order to share thoughts, feelings, updates, etc.

When I sit in the rocker in Madison's room I often look at my belly pictures hanging on the opposite wall. As I've said on our blog in the past, I can't believe that she was once a part of me, now that we have her here in the world. And while I can look at those pictures with fond memories of being pregnant, I can't help but remember how scared and troubled I was during that time.

January 15, 2010 was the day Dustin and I learned that our precious "peanut" was a little girl. I was 18 weeks pregnant and it was the same day my doctor told us she believed she saw signs of Spina Bifida in our baby. Our joy was quickly replaced with devastation upon hearing the news. The remaining 21 weeks of my pregnancy were bittersweet as I carried my sweet Madison, unsure of what was "wrong" with her or what challenges we would face as parents to a child with Spina Bifida. We had so many questions for the many doctors we saw and the uncertainty of it all was more than we could bear at times. But now that Madison is about to be three months old and we've lived what has seemed a lifetime since January 15th, the questions I had while pregnant I can now answer myself.

These are the questions I asked my doctor after that first ultrasound and here are MY answers.
QUESTION: "What will be wrong with her?
ANSWER: Nothing. Nothing at all is wrong with her. Madison is progressing beautifully and she continues to be an amazing picture of God's healing grace. Don't think for a minute that Madison's middle name is Grace by accident.

QUESTION: "What will we notice is different about her?"
ANSWER: Nothing. When Madison's hair grows back to cover the shunt incision on her head, you would never know by looking at her that she was born with a birth defect. That is the only thing you would notice.

QUESTION: "Will she have developmental delays?"
ANSWER: Everyday Madison is growing and overcoming the odds. Is she a little behind in holding her head up? Yes. But I have to remind myself that while other babies would spend their first month learning how to do this, my baby was connected to monitors, cut on three times, and was heavily sedated and on pain medication for over a week. She gets extra time to catch up. Otherwise she is right on track with her physical and social development.

Dustin and I marvel at how God has worked through our daughter. And to think that a doctor questioned whether or not we should continue with the pregnancy makes me sick. What blessings we would have been robbed of if we had listened to that crazy doctor. What a miracle we would have missed. Madison is a our beautiful and perfect gift from the Lord. She makes loving her the easiest task in the world. Her diapers turn my stomach but her smile melts my heart. I miss her when she sleeps and I am overjoyed to walk into her room and scoop up my warm little peanut and snuggle her after a nap. I love how she tries to sing along with me when I sing her her night-night song (we've caught this on video so I have proof that she does it though it seems impossible she could). When she sucks on her fingers I laugh because she was given a perfectly good passie to suck on but spit it out because her fingers are apparently better. I cry just looking at her sometimes because I can't believe how beautiful and perfect she is. I beam with pride every time I take her out or we go to church and she doesn't make a peep, just sits there like the best baby in the world. I go to pieces when she makes her sweet baby noises and talks to us with her two favorite words "goo" and "huggie."

The only question I'm left with now is this...
QUESTION: "What else will the Lord allow us to experience on this journey?"
ANSWER: We do not know yet. But Psalm 34:4 says that if we will seek the Lord, He will answer us and He will deliver us from our fears. This gives me confidence that nothing else we are meant to endure will be more than our Lord can deliver us from.

Lastly, I want to share a sort of poem (by Roy Lessin) that we were given on a greeting card after Madison was born. This card has really stuck with me and has encouraged me greatly.

Your daughter is here not by chance, but by God's choosing. His hand formed her and made her the person she is. He compares her to no one else- she is one of a kind. She will lack nothing that His grace can't give her. He has allowed her to be here at this time in history to fulfill His special purpose for this generation.

Roy Lessin didn't know he was writing that about Madison Grace Rawls when he wrote it but he was.

Be blessed.

~Mandy

Wednesday, July 28, 2010

Things to be Thankful for!

Hey Everyone...

It is Dustin posting this time, and I really have missed putting some of my thoughts on here. We have had a pretty amazing week, and I have been looking forward to sharing with everyone all the things we are thankful for! Two things: I hope you enjoy, and I hope God gets the glory!

So, here are the things we are thankful for!

1. God and His Perfect Will!

This story will end with our visit this past Monday at the Spina Bifida Clinic, but I must start at the beginning. As many of you have read and come to understand along with us, when we learned Madison had Spina Bifida, Dr. Tulipan informed us chances were high that Madison would eventually require the VP shunt surgery to relieve the extra pressure on her brain caused by hydrocephalus. Many, many of you have prayed along with us for God to work miracles in her little body so that she wouldn't require the surgery. We all prayed, and we all believed. I will confess, when we learned that the shunt surgery was no longer unavoidable but imminent, I was hurt. Throughout my prayers for Madison to avoid the surgery, I also prayed as Christ taught us in that the Lord's Will be done. I am thankful that His Will all along was that she would have this surgery. The miracle is that Madison is healed, and He chose to work that miracle through surgeons and modern medicine. This doesn't limit God, because He could have healed her at any moment He chose. I look at this as confirmation that God is the author and creator of ALL knowledge, and that He still healed Madison His way. Madison has been a different baby since the surgery. She is more alert, eats better, tracks movements and noises more easily, and has improved in every way imaginable since the surgery. Even though we had to endure the impossible the night of her surgery, God's Will was done and we are all the more thankful for it. As I mentioned earlier, this was confirmed by all the specialists we saw at Spina Bifida Clinic this past Monday. If Monday had been Madison's ACT, she would have scored a 35. If it would have been her SAT, she would have scored a 1580. If it would have been her GPA, she would have had a 3.98. Many of the specialists we saw referred to her as "PERFECT" in the respective area. Madison's urologist wanted us to monitor the only imperfection we found on Monday, which was Madison's urine output. That is the only reason why she didn't score a 36, 1600, or have a 4.0. For the first time in quite some time, Mandy and I left Vanderbilt without weights tied around our necks! It was awesome to drive back to Cookeville with smiles on our faces and praise in our hearts. Like the title says, we are truly thankful for God and His perfect will and plan!

2. Prayers

I really don't know if I will be able to say the right thing here, but I will do my best. Mandy and I would not be where we are or who we are without your prayers! Throughout this blog, I have come to learn that there are people praying for our family that I have never met. The only thing I think I can say to put it into perspective is that I ask God for the ability to know who all prayed for our family during this time so that I can hug every single neck in Heaven! I believe part of our time in Heaven will be spent rejoicing with one another about was God did for us down here, and look forward to meeting people and knowing immediately that they had lifted us up when we couldn't do it for ourselves. I have prayed that God would return blessing seven fold on the families of every single person that prayed for us. Prayer is the great equalizer! It is God's prescription for our life.

3. God's Word

I will also make another confession here in that I surely haven't been reading the Word like this section implies. However, during the last few months, the Lord has revealed his Word to me in powerful ways through my wife, other believers, random sightings, and divine intervention. Just to name a few: Psalm 105:5, Galatians 6:2, Jeremiah 29:11, Philippians 4:6-9, James 1:17, Philippians 1:3, and of course 1 Corinthians 10:13. Remember, during a difficult time of Jesus' life, he was comforted by scripture when He quoted to the devil himself that the the Word of God says "Man shall not live on bread alone, but on every word that proceeds out of the mouth of God." (Deuteronomy 8:3)

4. Family

I don't think I can right much here without crying! During the last few months, our family has cared and provided for us in ways that amaze me. To sum it, they have cared for us emotionally, physically, financially, sacrificially, and most importantly spiritually. Also, family goes beyond being blood relatives. If you have ever cried for Madison, prayed for our family, brought us a meal, traveled to Nashville or Cookeville to see us, or met any need we had, you are family. We have been provided for by hundreds of our family members. We love each and every one of you!

5. My Wife

I thought I got choked up with the last one, but this is a whole different level. Can't say much except God gave me the perfect gift and partner in Mandy! I really can't think of any more words (been staring at my screen for who knows how long), so I will just reference point number one. I am thankful for God's perfect will for our lives and giving me a wife that helps me glorify Him!!!!!

6. Insurance

Enough Said!

7. You

Truly, if you have taken the time to read this blog, or any other posts we have put up, I am truly thankful for you. I hope somehow Madison's life and story have impacted you! Her life is a tale of hope, inspiration, and divine purpose! Madison has already changed the world in seven short weeks.

all my love,

Dustin

Sunday, July 25, 2010

Headed Back to Vanderbilt

Hello, all. I just wanted to post a quick note to our blog before we head to Vanderbilt tomorrow for Madison's first Spina Bifida Clinic visit. Spina Bifida clinic is basically a one-stop shop for all the medical disciplines relating to this condition. We take Madison to one location and all the doctors come to her- it's really a great concept considering we would otherwise be making 8 separate trips to Vanderbilt. We begin our day at 9:00 am and our last appointment starts at 2:30- if we stay on schedule which I doubt we will. On the schedule for tomorrow is 3 ultrasounds, a urology and neurology consult, physical and occupational therapy appointments, and a visit with a nutritionist. Needless to say it will be a long day for both Madison and her parents.

As I think about what tomorrow holds my immediate feelings are that of anxiety. And almost simultaneously I am reminded that the Lord tells me, "Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6 My head tells me that the visits will be fine and we have nothing to worry about. My momma's heart is afraid we will get a bad report about something or that Madison is not making the kind of progress they would like to see. So, I am left with no choice but to ignore my head and my heart and listen to the Holy Spirit and rest in Him. It's not easy to do but I am praying, as His Word tells me to, that we will have a great day tomorrow and that God would release me from my anxiety. The next verse after Phil. 4:6 is what I will cling to tomorrow. "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Dustin and I would ask that you keep our family in your prayers tomorrow. We believe in being specific when we pray and these are the things we're praying for:

1. Safe travel to and from Vanderbilt.
2. Appropriate healing will be observed from both of Madison's surgeries and her 3 scars.
3. Ultrasound will reveal healthy functioning kidneys/bladder and that we can decrease Madison's caths-if they feel she's doing better with voiding on her own.
4. Doctors will not be concerned over Madison's lack of feeling in her feet- we're hoping this is something that will improve over time.
5. Madison will have gained significant amounts of weight.
6. Therapists will observe significant strength and movement improvement and therapy will not be necessary. I'm going to suggest that if they do not believe she demonstrates proper strength and movement that they try changing her clothes. That'll show 'em. It's like trying to wrangle an angry bull.
7. Overall good bill of health for Madison.
8. Peace of mind for mommy and daddy.
9. Rest for all of us on Monday night- tomorrow will be a terribly long day and will exhaust us.

Before I go I just want to say thank you to you for taking time to read our blog. Almost everyday we hear of people who are following our blog and we are amazed at how far-reaching this web page has become. We know that many of you pray for us each time you read it and your prayers have made an eternal impact on our family. Thank you for sharing this blog with your friends, families, and co-workers so that they can take part in this story and stand in prayer with us that God continue His miraculous healing of Madison Grace.

I look forward to posting on Tuesday all the great news we will receive from Madison's doctors at her first Spina Bifida Clinic visit.

Take care! Be blessed!

~Mandy

Friday, July 23, 2010

So Many Headbands...So Little Time



As stated in the previous blog, I'm posting some pictures of Madison in just a few of her many headbands. You can't tell me she's not the cutest thing you've ever seen in a headband!

Tuesday, July 20, 2010

6 Weeks

It's amazing how slowly 9 months of my life passed while pregnant with Madison. Once I found out I was pregnant I immediately felt a sense of anticipation for the time our baby would arrive. It seemed as though the weeks could not pass by soon enough and that I would be pregnant forever. But of course I wasn't and 6 weeks ago today Madison arrived and changed my life forever. Since her entry into the world the time has flown by and I can't believe she has been a part of our family for 6 weeks now. It is possible that in the past 6 weeks I have experienced every human emotion possible since becoming Madison's mommy and it has left me both overwhelmed and amazed.

The first thing I felt was sheer amazement that the baby I had carried for 39 weeks was finally outside of my body and she was beautiful. Then I felt joy because my baby could move her legs, which we were afraid she wouldn't be able to do. Madison's surgery to close her spine had me feeling helpless. Seeing her tangled in the wires of monitors and IVs in the NICU made me ache with sadness. Strangely enough I felt very calm about bringing her home to care for her on our own. Then in the blink of an eye I felt exhausted. I will say that I think all the restless nights in my last months of pregnancy coping with indigestion and the world's smallest bladder helped prepare me to sleep very little with a newborn in the house. Next, I was baffled that such a tiny, beautiful little girl could make such stinky and disgusting messes in her diapers. Before I knew it I had my first taste of fear as a parent when Madison's incision cite became swollen which led us to admit her to the hospital once again for her second surgery. That whole ordeal produced feelings of anxiety, frustration, panic, and heartache (refer to Dustin's blog "No Words" if you missed that story). And now that we are back at home with Madison and she is doing so well I've begun to feel adjusted and happy with life as Madison's mommy.

It has literally felt like we've been on a roller coaster of emotions these past 6 weeks and in the midst of all these experiences, several things have occurred to me. Not once have I felt alone. That's because the Lord has never left me. He's been there during every high and low right along with me. And it's also because the Lord gifted me with an amazing husband, a loving family, and incredible friends who have supported me in every way possible- physically, emotionally, and spiritually. It has occurred to me in these past 6 weeks that God is using my infant daughter to teach me lessons in faith and love that I've never learned til now. I have experienced a new kind of love since Madison arrived and it completely overwhelms me. I understand for perhaps the first time just how much my Heavenly Father really loves me as His daughter and would do anything for me, even give His life (John 3:16), just as I would do for my daughter. Because of Madison's Spina Bifida we have encountered challenges that many parents do not and God has worked through them to demonstrate His power. I have seen Madison, in her 6 weeks, demonstrate more resiliency and strength than most will in a lifetime. Her strength comes from the Lord- I have no doubt about that. And He has given me supernatural strength to meet Madison's needs and cope with overwhelming circumstances when I thought I couldn't anymore. It has also occurred to me that a medical prognosis is no match for God's power to work miracles and heal, as evidenced by Madison's progress with her Spina Bifida. Does that mean I have no faith in modern medicine? Absolutely not. God has used the hands of many doctors, surgeons, and nurses to care for our sweet girl after her surgeries and we are so grateful for them. Though Madison's body bears scars from the surgeries related to a birth defect, I WILL NOT allow her to believe she is less beautiful or perfect because of them. She has made my life full and I will spend every day of my life making sure hers is lived to the fullest as well.

My greatest realization from the past 6 weeks is that God is in control and nothing I ever did or will do can change that. God has used the birth of Madison and her Spina Bifida to show me that He can heal, He knows what's best, and He loves me despite my worry and fear. God knew all along that Madison would be born with Spina Bifida and that he would heal her and make her strong. And while I wish Madison did not have to endure what she has and will continue to endure, I know He formed her just the way He wanted her. Nothing I did or didn't do created these circumstances. To think I could possess such control and power is laughable. "Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Proverbs 19:21 I'm grateful the Lord's purpose for Madison Grace involves me and humbled that He has used our 6-week old bundle of joy to help me better grasp His awesome.

The last few things I'll share are a few insights into Madison's development over her past 6 weeks (much like the Top 10 List I wrote several weeks ago):

-Madison's nickname is "peanut"...that's what she looked like the first time I laid eyes on her in our first ultrasound.

-We think Madison is not too far away from showing us a full fledged smile. She's shown signs of trying, but she hasn't quite got the hang of it yet. I know my heart will melt when she finally does.

-As reported in an earlier post, Madison has tons of headbands. I'm glad to report the headband collection has increased by 4. That brings the grand total to 31! I'll post some pics of her later to prove to you that she is the cutest thing in a headband you will ever see!

-Madison is mesmerized by Lambie, what we call the stuffed lamb my friend Shelia gave her, that plays the song, "Jesus Loves Me." We wind it up and let her listen to and look at it when she's going down for a nap and 9 times out of 10 it lulls her to sleep. Thank you, Shelia!

-I know you won't believe me, but the hair on top of Madison's head naturally stands ups and resembles Elvis' hair. You probably think that since I'm such an Elvis fan I've tried to style her hair that way but I promise I have not. Anybody know where we can get an infant Elvis costume? I think she's destined to be Elvis for her first Halloween! :)

-While sleeping, Madison positions her arms beside her head like she's being arrested. It's too funny!

-The last thing I'll report is about her eyes. I made up a song that I sing to Madison to the tune of "Camptown Ladies (Doo-Dah)"...
Guess who's eyes are turning brown? Mad-i-son, Mad-i-son
Guess who's eyes are turning brown? Mad-i-son Grace Rawls
They are turning brown. That makes Daddy frown.
Guess who's eyes are turning brown? Mad-i-son Grace Rawls

If you couldn't tell by my lyrics, Dustin is upset that Madison's once blue eyes, are turning brown like mine.

Well, in the words of Porky Pig..."That's all folks!" Take care and God bless each of you!

~Mandy

Friday, July 9, 2010

No Words (but it sure is wordy!)

Hey Everyone... Dustin here, and I am full of emotion as I begin to write an update from my point of view on everything Madison since my last post. Much has happened since my last post, and I am so glad that Mandy took the time to post an update introducing you all to Madison. I have really struggled with want I want to say here, and that is why I titled this post as "No Words." I am going to do my best to write about our experiences, which include dreadful lows and heavenly highs. For this reason, I probably won't be able to find the words to completely recall everything that has happened to our family over the past couple of weeks. However, I promise you all that I will do my best. Remember, this story is about a little miracle and her Father... our Heavenly Father!

Before we had Madison, people told us a few "nuggets of truth" to prepare ourselves. These were things such as (1) we will never sleep again, (2) it will take twice as long to do everything from this point forward except showering which will only take half as long, and (3) we will never love anything or anyone as much as sweet Madison ever again! I will have to agree that everyone was right, but we still didn't understand! A month later, I am happy to announce on behalf of mommy and daddy Rawls, we get it!

Looking back, the week after we arrived home from VUMC was a blur! I don't know what we would have done if Mandy's mom Denise didn't stay with us for the week. Plus, Mandy's dad Vann came in both weekends and took care of all the chores around the house. Because of Madison's Spina Bifida, she has to be fed and cathed (inserting a catheter so that excess urine can be drained) around the clock. Slowly but surely, those three hour shifts began to take over. I honestly remember thinking at one point that I didn't know what day it was, nor did I really care. She is a special little girl, and she will require special attention. Mandy and I are so blessed and appreciative of the time and sacrifice Vann and Denise gave us that week. They were a perfect example of God's Love!

We spent the following week at home, watching Madison grow and visiting her pediatrician every other day. While we were home, we got another ultra sound scan on Madison's head done at Cookeville Regional Medical Center. We brought those results with us when we returned to see Dr. Tulipan for our two week follow up appointment. He reviewed the scans, and even though he felt her ventricles were slightly increased, he sent us home for four weeks before our next appointment. Mandy and I left Nashville so excited, and we only had to wait in Cookeville for a few short days before returning back to Nashville to celebrate the Fourth of July holiday with many of our family and friends who had yet to meet Madison. Mandy and I rode high the rest of the week knowing that Madison had avoided shunt surgery once again...

...then Friday July 2 came!

We woke up early on the second to get to my parent's house so that we could go swimming that day. After we arrived there, we noticed that the incision site around Madison's surgery was beginning to swell. We honestly didn't think much about it at the time, because Madison had been quite active the week before and we thought she may have just over done it a bit. Mandy and I visited with my niece and nephew for a good while that afternoon and re-examined the site once we arrived at my parents. It had continued to swell, and our anxieties began to do the same. We monitored Madison the rest of the night, and by nights end, the site had swollen to double its size. Madison wasn't showing any discomfort to the touch, nor was she feverish, irritable, lethargic, and the site looked fine. We were worried, but the site nor Madison herself showed any signs that anything serious was wrong. So, we kept our regular routine and headed to sleep to get ready for our family's July Fourth celebration the following day (on the third).

The swelling continued during the night. As we already mentioned, Madison didn't appear to be bothered by it, nor did it present any textbook signs of things that would worry us. We let her take it easy the rest of the day, and we still decided to go to my brothers to enjoy the fireworks and festivities. We let a few people hold Madison for a little while, but we decided that being passed around probably wasn't in her best interest. So, my brother and sister-in-law offered to lay Madison in the middle of their bed with her bumpers so that she could rest. We did that, but by the end of the night, her incision had swollen to about triple in size. We were extremely worried at this point! Three of our cousins are nurses, and they came to look at it and felt that our assessments we mentioned earlier held true. On a side note, the two biggest hits of the party were my brother's fireworks display and of course sweet Madison. I will have to give my brother and sister some credit here... Each July 5th, they go out and buy a load of serious fireworks to hang on for an entire year. That saves them cash, but it also helps put on a sweet back yard show in the sky.

After arriving back at my parent's house the night of the third, Mandy and I were consumed with worry at that point. There was just something about this that didn't set well with us, especially me. I was wiggin' out because of the swelling at the base of her spine, because I had just gone through something that was eerily familiar. When I had back surgery at the end of April, something went terribly wrong within the next few days. We learned that I tore a whole in my dural sac and began to leak spinal fluid that pooled at the base of my spine... the same place as Madison's swelling. Naturally, I immediately jumped to the worst conclusion that this is what was happening to Madison. The difference with me, is that my spinal fluid actually burst through the incision site because I still had staples in and the skin was weak. Madison's site had healed up quite well, and there didn't appear to be a weak spot for the fluid to drain from. Long story short, neither of us sleep well that night, and we decided to call VUMC's on-call neurosurgeon first thing the following morning!

Happy Fourth of July!!! Our day began with a run of the mill phone call to a neurosurgeon. We explained to him Madison's Spina Bifidia and all the symptoms we saw at her site... He proceeded to run us down the checklist I referenced earlier... (1) Is the site red?, (2) Is the site hot to the touch?, (3) Is she running a fever?, (4) Is the site leaking?, (5) Has she had an extreme change in behavior (lethargy or irritability)?, or (6) Is she vomiting? Once we had answered negatively to all the questions, the on-call physician didn't appear to consider the situation serious and called it "non-emergent." As soon as we hung up the phone, Mandy asked me if I felt any better, and I immediately responded NOPE! So, we changed our actual July 4th plans and just stayed at my parents house all day so that Madison could rest. We began packing things that evening for a return trip to Cookeville the following day, still feeling uneasy about the swelling. Monday came early, the day we were supposed to return to Cookeville and the day most businesses were recognizing the Fourth Holiday. We changed our minds and decided to stay in Nashville at my parents house so that we could actually call Dr. Tulipan the following morning just to double check everything.

That is what we did, and that is when the week got flipped on itself!

Mandy spoke with Dr. Tulipan's nurse practitioner. She said that if we still had that strong of feelings that something wasn't right, it would be better and quicker to bring Madison to the ER for ultra sound scans so that we could really get a clear picture of what was going on in her little body. We arrived at the VUMC ER about 10:00 am Tuesday morning July 6. We made sure to feed Madison at 9:00 earlier that morning just in case we might be there for a while. That was a smart decision!!! After we got there, and the doctors saw the first set of scans, they told us we couldn't feed Madison any lunch until told otherwise. In hind sight, that was pretty strong foreshadowing. After the second set of scans, and Madison well behind her noon lunch, our fears were confirmed as one of Dr. Tulipan's residents came in to explain everything to us. The swelling was indeed a build up a spinal fluid. Her brain was producing too much fluid for her body to reabsorb at the normal rate. The extra fluid found a weak spot at her incision site and began to collect just under her skin. The doctor informed us there that the shunt surgery we had been hoping and praying to avoid for so long was no longer unavoidable. He originally scheduled us to return Friday for the surgery and then returned to our ER room within five minutes to tell us that he had a opening in the schedule for the next day and wanted to go ahead and push Madison's surgery in there. He reassured us the only reason for this was because a slot had opened up and he wanted to avoid a CSF leak that had collected at her incision site. That would have been Bad News Bears - Walter Matthau!

Mandy and I returned to my parents house a little shell shocked, but relieved to know that our parental instincts were confirmed and also concerned because our little angel was going in for her second major surgery just four weeks into a troubled start in this world! Mandy and I tried to take it easy the rest of the day, and we both tried to sleep the night before her surgery, but that just didn't happen!!!

I really don't think we were prepared for what the following day was going to give us!

We were instructed to be at the surgery check-in at 7:00 am for an 8:30 surgery. So, 5:30 am came early after going to sleep just two hours earlier. Shortly after arriving to check in for the surgery, we quickly learned there were some issues regarding the scheduling because the pre-registration agent told us she had Madison's surgery written down for Friday. We explained to her that it was originally scheduled for Friday, but the resident wanted to bump it up because of the surgical opening and the concern to do everything to avoid that sac of CSF (Cerebral Spinal Fluid) from leaking. To complicate things, the scheduling nurse we spoke to who informed us to be there at 7:0o also told us that we could not feed our infant daughter anything after Midnight the previous evening. Needless to say, neither of us slept much just to keep our daughter pacified so that she couldn't/wouldn't think about how hungry she was feeling. Well, 8:30 am came and went, and we learned that we had been bumped back to a 1:00 pm surgery, so at least we could feed Madison a full bottle at 9:00 am. We also learned that we could have fed her throughout the night as long as she had nothing at least four hours prior to the procedure. Since Madison is taking breast milk only, she metabolizes it much faster than formula, so doctors are okay with the four hour feeding time window. Somebody must have skipped that lesson in nursing school! We were not happy!!!!!

We fed her, and she immediately crashed from being satisfied and so worked up for so long. As 1:00 began to approach, we were visited by yet another nursing assistant who told us that the surgery had been bumped back to 3:30 (which we later found out was the actually time set from the beginning), and that we could feed Madison some Pedialite, as long as she had it finished by 1:30. We started the Pedialite at 1:00, and she was finished by 1:04!!!

They finally took Madison back that afternoon for her surgery. We met with all the doctors and nurses who were going to be in the room with Madison for the surgery. They told us that it would take longer to prep her for the procedure than to actually perform the surgery. After praying over her, and many tears, they wheeled her back at 3:30 sharp. The nurse we met said she would call the waiting room to inform us when the surgery had started. That call came at 3:39. Then we immediately received another call at 3:46 that the surgery was done, and that sent chills down our spine. The Nursing scheduler on call assured us that nothing had gone wrong. It was just a combination of a very fast surgical procedure and the fact that the OR nurse didn't exactly call us as soon as Dr. Tulipan began the procedure. We were shuffled off to a waiting room to meet Dr. Tulipan. He told us the surgery went according to textbook, and he was very happy with everything. We asked more questions, and each answer he offered reduced our anxiety level. After he left us, we felt really good about the surgery and were hopeful everything was behind us. We returned to the waiting room until another set of nurses said we could come to Madison in the post-op recovery room. That took a while to happen, so I will be honest when saying that our anxieties began to creep back up!

Nothing, and I mean nothing, could have prepared us for what we saw once we got to Madison in her recovery room. When I spoke of no words earlier, this is where that sentiment truly comes into play. When we were about ten feet away from her recovery room, we heard this cry that sounded like it was coming from a grown male dog. The intubation tube had extremely irritated Madison's larynx and sphayrnx (throat), and that poor girl was so hoarse!!! Long story short to start out, Madison didn't due well with the anesthesia from the surgery. The surgery itself went great, but we had some significant problems to do the anesthesia. Madison was pale as a ghost, and she was apparently in severe pain from the surgery. Tulipan's resident said he wasn't a real big believer in pain medicine, especially in patients that just had brain surgery. I understood his perspective, but after thirty minutes of these cries I have never heard before, we began having the nurses page people to get back down there. In a matter of sixty minutes, we left Dr. Tulipan on cloud nine after he informed us of the success of the procedure and entered Dante's ninth level of hell seeing our sweet little girl in that condition. WE WERE SHELL SHOCKED!!! Madison could not be moved or touched without screaming out in a cry that made our heart hurt. We quickly followed up with some doctors who prescribed her some pain meds, but she was so far behind the pain... it was not a good situation.

We were in the Post-Op recovery room until 6:45 pm from a 3:30-3:45 surgery. Madison's body wasn't responding well to the anesthesia nor pain medicine. They wanted to move Madison to her hospital room so that she could get hooked up to the monitors and have the resident on the floor right there to observe her vitals which were all over the place. After we got her settled and started her first set of vitals, it was clear that we were probably going to have a tough road ahead of us. Her heart rate was hovering somewhere between 180-200 bbm, and her initial blood pressure was 130/73. That is the blood pressure of a a fully grown, healthy adult. The nurses and docs didn't like that, so we doubled our efforts in monitoring her. To make things worse, she was in so much pain, whenever the pain would catch her off guard, she was take deep gasps of air and hold her breath for quite some time. That act alone basically rendered the machine recording her vital signs useless!!! We brought more doctors in to observe and assist. Shortly, we all came to the quick conclusion that Madison was just feeling more pain from the surgery compared to other babies. She needed pain medicine, stronger pain medicine, and quickly so that we could get the situation under control. This process began at about 8:00 pm and lasted until 5:00 am, which effectively lead to the longest, hardest night of my life.

I conned Mandy into going to bed to sleep so that she would be able to pump breast milk the next day. She learned of my conniving ways early in the morning, and she wasn't happy with me because I promised I would share the bed with her at some point in time so that I could sleep too. We had enough at about 4:00, and I told our nurse to page someone from neurosurgery to get over here to give us some options. I cannot remember her name, but neuro doc on-call agreed with our pain assessments and decided to prescribe Madison a baby dose of Morphine, and looking back, that is were we finally turned the corner. Up until that point, I have never felt stress nor cried tears like that in my life. We experienced a pain that I honestly say ripped a part of our being out and left it in that hospital room. Madison screamed all night, and there was absolutely nothing we could do for her to either make it right or take it from her! Seeing her that way made me yearn to be in Heaven where there will be no tears or pain!!! Someday, Madison will rise without scars, shunts, and tubes in and on her little body!! Someday, I won't be reminded of the horror of that night when I look at her scars!!! Someday, we will rest in Heavenly bliss with Jesus in Heaven with glorified and flawless bodies!!!! I cannot wait for that day!

To get back on track, the morphine finally helped Madison get ahead of the pain and she finally fell asleep around 5:00 am for the first time, and mom and dad were quick to follow. The resident neuro-surgery physician that assisted Dr. Tulipan in the surgery stopped by about 7:00, but I honestly can't remember what I said to him and Mandy doesn't remember him even stopping by the room. He double checked the scar, said everything looked good, and reassured us we would be going home that day. We weren't convinced!

After her morphine dose, we continued her tylenol/codeine regimen every four hours from that point forward. That has made all the difference. Before 5:00 am, that wasn't our daughter. That was some broken version of Madison occupying that little body... she wasn't the same. The doctor reassured us that this will all pass, and we just needed to trust him. We tried our best to believe him and have faith in the Great Physician!! To our amazement, starting at around 10:00 am, Madison finally began to make significant strides. So much so, we asked to speak with Dr. Tulipan's nurse practitioner to lay out our criteria needed in order for us to be comfortable taking Madison home that afternoon. Besides the run of the mill concerns, we told her we would only leave the hospital if we had a five day prescription of the same Tylenol w/codeine script they were using in the hospital room. This way, we knew that we could keep Madison comfortable at home! She agreed, and the table was set to return to my parent's house and have the previous day and night from hell behind us! I think I aged five years in that one night, and I can honestly say that if there was any way that I could have put myself her in place, and I begged the Lord for that, I would have done it!

We left the hospital Thursday afternoon to return to my parent's house, but my mom had conditions if we were going to return there... She was going to send us to bed and take care of Madison's feedings, changings, and cathings all night long so that we could sleep. Well, she didn't have to twist our arms, and I think Mandy and I slept somewhere between 13-15 hours a piece that night. What was awesome, my mom did the same thing for us the following night, not to mention my aunt and sister-in-law who came over to take up many more "Madison shifts." They all really rallied around us for a few days, so that Mandy and I could rest and recapture our senses. I sincerely appreciate my aunt and sister-in-law for helping us out over this past weekend, but I would be a terrible son if I didn't emphasize here just how much my mom took over for us so that Mandy and I could hit the reset buttons on our mental and physical health. Each of you was a life saver, and I honestly don't know what we would have down without all of your help!!!!! You all showed us a perfect example of God's love in the family, and we love you very much!!!!!

You know, that really just about wraps it up. We returned home to Cookeville on Saturday night July 10. Mandy and I desperately needed to go grocery shopping, so once again my parents came to the rescue. They decided to take a bike ride up to Cookeville on Sunday the 11th and baby sit Madison for a few hours so that Mandy and I could go to Sam's and Walmart. I cannot believe they did that after everything else they had done for us over the previous few days. I am sure they didn't mind the snuggling perk that came along with the coming up, but still... That is pretty awesome huh?

Mandy, Madison, and I are home and hopefully for good!


***Funny Story of the Post***

Up to this point, this up update has been pretty serious, but you all know that I can't possibly put a post up without adding a little something that we think it really funny!!!

On the morning of Madison's shunt surgery, we woke up at the crack of dawn in order to make it to VUMC by 7:00 am. I got completely ready at the house except for shaving. I grabbed my electric razor before getting in the car, so that I could shave on the ride down. I checked it, and it had plenty of battery charge, so we headed out. As soon as I turned out of the driveway, I turned the razor on and began working on my right cheek. By the time we arrived at the stop sign at the end of the street, my razor had died. Apparently, after not using it for a month or so, the battery charge indicated on the front didn't quite match up with the true battery life that existed inside the machine. So, for visual aid... only the right side of my face was shaven - ALL DAY LONG. This was almost like the preppy mullet: all business on the right cheek, and all party on the left cheek!!!! It was really funny to look at, because the left cheek was definitely quite a bit more hairy than just stubble. Mandy and I had nice laugh with that all day, and it sure did help cut the tension here and there throughout the day (which might be why it happened to begin with). I hope you had a little laugh, because we sure did!


Praises in this update!


Madison's shunt surgery was truly successful even with all the drama!

Both set's of our parents really went out of their way to help us during the last few weeks, not to mention other family members that have helped care for Madison so that mom and dad could have a break!

We are back at our home in Cookeville, which always means we are more comfortable!

Mandy's best friend Amanda is on her way here to visit today, and I know Mandy is thrilled to be able to spend a week with her best friend.

Matt and Elisa Bragga came and mowed our grass for us while we were at VUMC, and that truly blessed us!

We have had enough finances come in to cover many of special costs associated with all of the medical and living expenses over the past few months. Without God working this out, I really don't know how we would have made it!

Ever since Madison's shunt surgery, she appears to be more alert, better able to track movements, stays awake longer, and just shows overall neurological and cognitive improvements.

God truly has shown us His hand of Mercy and Strength through this whole process, and He has already forgiven me for my doubting and faithless moments.

Mandy is recovering well and is the perfect mom for sweet Madison!


Prayer Requests for this Update:


Madison's overall continued improvement, surgical healing, and weight gain.

Mom and Dad's rest and strength!

Wisdom for Mom and Dad regarding the many and varied decisions that must be made for sweet Madison.

During the past month, it has become clear that Madison is going to require specialized care that most likely will be above and beyond the standard care any day care in Cookeville will provide. Mandy has the desire to stay at home, and I support her in that desire. However, financially we cannot make that happen under our current circumstances and salaries. Please pray God works a miracle somewhere that will allow her to stay home so that He receives all the praise!

NO MORE SURGERIES!

Well, I believe this is all I have for this time. As usual, I apologize for the length of the update, but as "they" say... it's all I got!

be blessed, be safe, and be loved!

Dustin

Tuesday, July 6, 2010

The Time Has Come

Well, unfortunately the time has come for Madison to have shunts put in her little brain. Some of you are aware that over this 4th of July weekend we had a little scare with Madison. Dustin and I noticed her incision site was swelling on Friday and we weren't sure why. On Saturday morning the site appeared to have doubled in size and that was more than enough to freak us out and prompt a phone call to the on-call physician from Vandy neurosurgery. The dr. (who shall remain unnamed for his protection since he wound up being WRONG) assured us that we had nothing to worry about as long as Madison's incision was not leaking fluid nor appearing infected. Needless to say this did not give us peace of mind because over the weekend the swelling continued to increase. Madison, however, did not seem to be affected by the swelling at all- she wasn't tender at the site and the girl was eating like a champ- we thought her appetite might be affected if she wasn't feeling well.


Now, I'm all patriotic and everything but the 4th of July holiday observance could NOT have been on a more inconvenient day this year- a Monday. Monday's holiday meant no contact with our pediatrician or more importantly Dr. Tulipan, Madison's neurosurgeon, to get some more information about the swelling since it wasn't going away. I really thought Tuesday would never come. But it did and I set my alarm for 8:30 am (just in case I dozed off- which I did) so I could call Dr. Tulipan's office first thing and get to the bottom of my baby's problem. After explaining the circumstances of Madison's swelling, we were encouraged by one of the nurses to take Madison to Children's ER at Vanderbilt. So, we loaded up and headed that way after her 9:00 am feeding. Dustin and I were not prepared to be back at Vanderbilt so soon after Madison's birth (she is 4 weeks old today) and it was a little more emotionally difficult for us than we expected. What didn't help the situation was that they tried to starve Madison during our 4 hour stay in the ER. She was due to eat at noon and at 1:30 we still weren't allowed to feed her. Needless to say we had a very unhappy baby on our hands and I was about to come unglued that she was starving to death. My momma instincts were in full force and I was about to tangle with the ER staff if they didn't let me feed her. For those of you who have been keeping up with our blog, at this time I would like to reference Dustin's blog from 6-18-10 "Final Moments at VUMC" when he recounted the story of me losing touch with reality about him not having a place to sleep in our family room. Motherhood has apparently brought out a protective instinct in me and you better not mess with my family. Yikes, that sounded like a threat. Because it was. No, just kidding. :) All I'm saying is that it killed me that my little girl laid in a bed for almost 2 hours without being allowed to eat and it hurt my heart and I did not like it. But I digress- back to the important stuff. Madison had a spine and head ultrasound while in the ER which was reviewed by Dr. Tulipan and his resident. They came to the conclusion that the shunt surgery we were hoping to avoid had now become a necessity for Madison. We were upset to learn that our sweet girl would have to undergo another surgery but we were reassured by the doctors that we did the right thing by bringing her in and the shunts would take care of that spinal fluid build-up and ventricle dilation. Thank you Lord for not letting us have peace about the swelling which prompted us to seek further diagnosis beyond that phone call to the on-call physician.

As I mentioned in my last blog, we do not know what challenges may/may not lie ahead for Madison. We were so hopeful Madison would escape this surgery but it is clear that the Lord has different plans. So, we just pray, and ask that you join us in prayer, that God guide Dr. Tulipan's hands once again as he works on our sweet Madison and that she be granted a full and speedy recovery from this surgery. As it turns out, we have peace about this surgery and what it will mean for Madison's long-term prognosis. We are prayerful that this surgery will be the last of procedures for Madison. It may not be but we pray it is.

We will update the blog with how things go as soon as we are able to. Thank you in advance for your prayers for Madison. You have no idea how it makes me feel to know so many people are praying for our little girl. My heart is full of thanksgiving for you and your faithfulness to pray.

Take care and God bless you!

~Mandy

Tuesday, June 22, 2010

A Blog from Mommy

It's been a while since I blogged and now that I'm starting to feel adjusted to parenting a newborn, I thought I'd take this opportunity to blog about motherhood and Madison while I have the chance. I'm sure everyone would much prefer Dustin's clever wit but I wanted to share things with everyone about our precious girl. Regretfully it might be a bit longer before we venture out into public so no one is really getting to know Madison other than Mommy and Daddy. So I'll tell you that she is pure joy, and sweetness, and perfection wrapped up in one tiny, little beautiful body. Now keep in mind that I haven't blogged since before Madison was born so get comfortable- I've got lots to share.

I remember thinking on a daily basis while pregnant, I can't believe God is growing a person inside of me. Madison almost seemed unreal to me before she arrived because she was so hidden. Of course her movements reassured me that she was real but I was just completely overwhelmed by the miracle of life God was allowing me to experience. Needless to say, when I heard my little girl take her first breath and cry in the operating room, God's power took on a whole new meaning for me. I thought I could literally rise and fly up off the OR table when I heard that sound. It still gives me chills to remember and every tear and every heartache I experienced during my difficult pregnancy was erased in that one moment. God had sustained her in my belly for all that time and formed her in His image before allowing Dustin and I to meet her on June 8th.

Now that Madison is here and I can see her and touch her, I am even more amazed that God would allow us to experience such a miracle. One night I had put her to bed (her bassinet is right beside our bed) after our nightly routine and climbed up in bed to get some sleep myself. Unlike her usual good baby self, she got fussy. I knew it was not hunger, or a diaper, or a burp that was causing our princess to cry. So, I just leaned over, picked her up and held her so that she could look directly at me. Almost immediately Madison's crying ceased and mine began. It was the first time that Mommy was what Madison needed to soothe her and it completely overwhelmed me. We spent the next few minutes just staring at each other, studying each other's faces. I just wept at how beautiful and special she was and in awe that God had entrusted this amazing creation to us to take care of.

While I can't speak for Dustin, parenting Madison has felt as natural as breathing for me. For as long as I can remember I have wanted to be a mommy and the experience is more rewarding than I ever thought it could be. The fact that I teach family & parenting classes has no doubt helped me in caring for Madison but I now realize that Dustin and I were chosen for Madison and our ability to care for her the way she needs to be cared for is nothing I learned in school- God has given me this wisdom and patience and ability to be the mommy Madison needs. Hebrews 13:20-21 says, "May the God of peace...equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be glory for ever and ever." There is no doubt in my mind that the Lord has equipped us to parent Madison. We do not know what challenges or obstacles may/may not lie ahead for our little girl but I know that God will accomplish His perfect purpose in Madison and work through her as it pleases Him. I would be lying if I said that my concern over Madison's Spina Bifida has vanished but the Lord will equip me to handle whatever He has in store for us and Madison. He has already blessed us beyond what we thought was possible through her birth and health thus far.

Like I said earlier I wanted to share things about Madison since very few people have actually gotten to spend time with her. Everyday she shows us more of her personality and we fall more in love with her each passing day. In efforts to acquaint you with her, I'll give you a list of 10 things you should know about Miss Madison...

1. Madison rides a bicycle. You're thinking how in the world is that possible but it's true...well, figuratively at least. When she gets her diaper changed or gets fussy she pumps her legs vigorously up and down and I promise you it looks like she's riding a bicycle. We laugh every time she does it and I whisper a prayer of thanksgiving to the Lord at the same time for giving her the ability to move those little legs. She shouldn't have that kind of leg strength with her form of Spina Bifida- but her strength comes from the Lord.

2. Madison is a diva. Now Mommy has been called a diva before and whether or not I agree with the label for myself, there's no mistake that Madison is a diva with a capital D. She knows how she likes to be held and if you don't do it just right, she's gonna let you know. Madison will not go to sleep until Madison is ready to go to sleep. If you put her down too early, she's gonna throw a fit which has lasted anywhere from 10 minutes to over 3 hours. We've had to learn how and when to put her down to rest to avoid those altercations. Madison does not like to have her clothes changed. Too bad for her- Mommy has to have that girl looking 100% FAB-U-LOUS at all times so she'll have to get used to being dressed up. :)

3. Madison is a trooper. Our little girl has had to undergo so much in her first few weeks of life and she has hung in there extremely well. One difficulty she still has to endure although she's left the hospital is the 4 times a day catheterizing we have to do. Every 6 hours Mommy and Daddy have to insert a tube into her urethra to drain any excess urine that she might not have emptied on her own (bladder dysfunction is a common symptom of her form of Spina Bifida and it is being closely monitored by her doctors). The first few days I had to do this I just wept because I hated that she had to endure it. But like I said Madison is a trooper. She calmly lays there while we complete the process and rarely makes a peep while we do it. When I finish with her each time I scoop her up and love on her and say a quick prayer that we will not have to continue cathing her for much longer. Needless to say we celebrate each time she has a pee pee diaper because it means she is emptying her bladder on her own. Who knew peep pee diapers would be something I could get excited about?

4. Madison is ticklish on her tummy. We learned this because we started tickling her belly to get her to contract her bladder when we cath her. I can't wait for the day when she laughs when I tickle that little belly.

5. Madison loves getting her hair washed. The first time I washed it was after a midnight feeding when I was restless and couldn't sleep. She was so cooperative and I thought it was because she was so sleepy after feeding but when I washed it again a few days later, while she was fully awake and alert, I realized that she really does enjoy it. She just lays there and lets me wash that head full of hair without any grumblings. If it were ok I'd wash it every day because I love the smell of baby shampoo and a clean head. But I don't want her gorgeous hair to fall out so I'll restrain myself.

6. Madison is the cutest thing you've ever seen when she wears a headband. So, in the future when we do start going out and about, I'd be willing to bet that girl will be sporting a headband. She has one to match virtually every piece of clothing she owns considering she has 27 headbands. Every single one of them was given to her too- Mommy hasn't bought a single one.

7. Madison is most alert from 9:00-10:00 pm. This is all good and well while Mommy is home for the summer and has no real plans from day to day. But I fear that her wanting to be awake at this hour will start to take a toll on me when I have to get back in the swing of things with school.

8. Madison loves her swing. I was so worried that she wouldn't like the swinging motion or would hate being strapped in but on the contrary, she enjoys it and it usually puts her to sleep. The swing is great for when I need to do things in the kitchen or living room and don't want to put her down in her bed for a nap. I can keep an eye on her while she sleeps when she's swinging and be productive at the same time. A big thanks to all my friends at CHS that chipped in to buy that for her!

9. Madison has the longest fingers. While her hands as a whole are very dainty, the girl has some long fingers. Which makes me wonder...how will God use those beautiful hands? I pray they are used for His glory.

10. Madison is constantly bathed in prayer. A few months ago our amazing Life Group leaders gave me a prayer journal so that I could keep track of prayer concerns, blessings, and things God teaches me through Madison. Before Madison was born I would go in her room and sit in my rocking chair and write in that journal, search the scriptures for peace, and pray for Madison. One day I will share some of things I wrote in that prayer journal and then tell you how God answered those prayers. But He is still in the process of answering our prayers and those of the many, many people (maybe yours) who have been lifting up Madison. God continues to glorify Himself through our daughter and He's not done yet! Dustin and I have been overwhelmed by the outpouring of prayers and encouragement we have received during the months leading up to Madison's birth and the nearly three weeks since then. You wouldn't believe the number of cards, emails, Facebook and text messages people have sent us saying "We're praying for Madison." Now I'm Madison's mommy so of course I love her but it amazes me how much she is loved by others and how her little life has touched so many. If you have ever sent us a card, an email, a Facebook or text, or any kind of message to encourage us or to let us know you were praying for us and Madison, I must tell you thank you and God bless you. You will never know what those prayers have meant to us. God has answered many prayers for healing from hundreds of people from across the state and beyond. So if you prayed for her, just know that the Lord has used you to bless our family. We pray for you that He will reward your faithfulness to pray for us and bless you in return.

Now before I finish, I must share a funny story (Dustin has had so many to share, now it's my turn). One night while feeding, Madison had a major spit-up incident that soaked her pajamas and mine. I carried Madison into our bedroom where Dustin was laying in the bed reading- I needed to change before finishing with her feeding because I was covered. Upon entering the room he asked what was wrong and I told him and asked that he keep an eye on her while I changed before resuming feeding. I told him that as soon as I got done feeding her I was going to sponge her off before putting her down to sleep. Well, that apparently was a call to action for Dustin- didn't mean for it to be but it was. I went back to the living room and had just finished feeding, burping, and changing Madison's diaper when Dustin appeared. He wanted to know if he could help. Wasn't that sweet? Yeah, you'd think it was sweet but now I regret asking for his help. I said sure, go wet a washcloth and put a little head-to-toe wash on it so I can sponge her off before I put her in her pjs. Dustin goes to our guest bathroom to complete the task but I noticed that it was taking him a little longer than expected. In a few minutes I found out why. Dustin returned to the living room with a washcloth so lathered in bath wash that I couldn't even see the washcloth and he has lathered soap all the way up his forearms. He looked like he was scrubbing in for a surgery. I sat in amazement at the pure amount of soap he had used and asked him what in the world he was doing. Before I could get an answer he started washing Madison all over. Let me remind you that all I wanted to do was sponge her off with a damp washcloth. Within seconds she was covered in soap from head-to-toe (I think he took the bath wash name a little too seriously). I was freaking out hollering- "What are you doing? She just needed to be sponged off! I didn't wanna give her a bath at 11:00 pm! Stop! Quit!" But it was like I wasn't there because he just kept scrubbing her as if she was covered in mud. I thought he might rub some of her little sensitive skin off. Then I asked him what he planned to do to get all that soap off, mind you we're sitting in the living room, Madison is laying across the ottoman. He said he didn't know. So, Madison got carried to the bathroom where she got a bath because that was the only way I could rinse off all that soap. All in all we wasted about 15 minutes on Dustin's procedure and I was fuming mad when we finished and Madison was exhausted from all the scrubbing. Needless to say it wasn't one of Dustin's shining father moments. It's funny now but I was not happy that we had wasted so much time when we all could have been in the bed.

Well, those are all the thoughts I have time to share with you for now. Thank you for taking time to read our blog and share this journey with us. I know this entry didn't provide you with any new information about Madison's medical progress but I simply wanted to share about her and what she's like since many of you have not met her or gotten to spend time with her. Like I said earlier...she is perfection, created in the image of her heavenly Father.

Take care and God bless! Love always,

~Mandy

Sunday, June 20, 2010

New Pics of Madison





It's Mommy posting this time. I'm not going to blog, just post some pics of our gorgeous girl. Daddy has been doing such a great job blogging but I also have some thoughts to share. I'll blog sometime soon. Until then, hope you enjoy these pictures of Madison Grace.

~Mandy

Saturday, June 19, 2010

Home Sweet Home

Friends and Family:

As I mentioned in my last blog, this is the second of my two part update recapping the major events of this past week. As the title suggests, it was bliss to get to Home, Sweet Home!

We officially arrived back at 1039 Heathwood West Drive at 9:20 pm CST Wednesday June 16. Earlier in the day, Yvonne Ward (a precious friend to Mandy, Madison, and me) had driven over and placed pink and white balloons on our Rawls family flag that flies in front of our house. It was a gesture that was definitely not overlooked. I remember Madison was scheduled to eat at 9:00, so I sent Mandy in to begin her feed while I took my time bringing in the contents from the Camry. By the looks of it, you would have thought Samford and Son was moving back home from a three month mission trip or something. I can't be certain, by I am pretty sure I heard the back end of the car drag the ground a couple of times during the return trip (and don't be funny, because I was sitting up front driving)... We got errrrthing in a settled within a half hour, and we tried to be in bed by 11 because we had our first pediatrician appointment the next morning at 8:30 am. That stunk!! I wish I had the bank roll to have brought a couple of the VUMC nurses back to Cooke-Vegas with us to manage Madison night time needs. We didn't know it, but we were spoiled rotten with all that!!!

That 7:45 am alarm buzzed like a fog horn, and Mandy and I didn't know that having a new born basically doubled the amount of time you needed to leave the house. Needless to say, we were late but everybody at Cookeville Pediatric Associates was very understanding and sweet! Through recommendations from our closest friends in Cookeville, we identified Dr. Leslie Treece as Madison's Pediatrician. I could be wrong (and I usually am), but I don't think Mandy and I woke up until well into our sit in the waiting room. We finally met Dr. Treece, who was great and is perfectly suited for Madison's care. We explained our history, and Dr. Treece mapped out a plan leading to our return visit to VUMC on June 28.

Funny story of the day...

At VUMC, baby boys are given the acronym Bb (ex. Bb Smith), and baby girls are given the acronym Bu (ex. Bu Rawls). For the life of me, Mandy and I couldn't figure out why they didn't just use Bg, but I am sure they had their reasons. When Dr. Treece entered the room to meet us, she said "this must be boo", thinking we had named our daughter boo. Now, I have down some crazy things in my day, but naming my daughter boo might have just taken the cake. We all had a great laugh and explained why she saw "Bu" on her records. To funny right? I thought so too!

I am going to include a random story here to once again prove that God is using Madison's story in an awesome way. Mandy and I drove separate cars to Madison's Pediatric appointment so that I could stop by Kroger on the way home to fill Madison's prescription and pick up some things to nibble on around the house. I was walked around Kroger, in my pajama gear nonetheless, and I was approached by two different people who I didn't recognize at all. They proceeded to ask me "you're Mr. Rawls aren't you?" To which I replied, "it depends..." Not really, I responded yes, and they simply told me they were praying for my family and our daughter. One of the ladies goes to church with us, and I never identified how the other lady knows us. (NOTE - if you are reading this, and this sounds like you, drop us a comment cause we would love to know who you were) To wrap the story up, I was struck in Kroger about how God's really is using Madison to rally people in prayer to truly impact a life. I know I went on in detail about my beliefs about this a couple of blogs back, but this is just another small example of how real this truly is. God loves Madison, and one of the way God expresses His love for us is by our prayers for one another. Two wonderful ladies in Kroger confirmed this for me!!!

You know, the rest of the week is pretty much filled with doing this or that for Madison... and going here or there for Madison. I am not going to bore you all with those mundane details, but I will take the opportunity to mention a few observations we have made since returning home.

There is no other place on earth that can give you the peace home can!

Becoming a parent that loves and sacrifices everything for their child is the most rewarding thing a person can do with his or her life!

The peace of God truly does surpass human understanding!

Thank God for grandparents that still mesmerize us with sacrifice and help!!


Funny observations:


No person the size of Madison should poop that much!!!

Never take pain medicine on little or no sleep... ever heard of Night of the Living Dead? I am pretty sure I walked and talked like Frankenstein quite a few times since returning home.

Get over getting pooped and/or peed on. It happens!!!

What would happen if we ate every three hours?

I am jealous of the life Madison leads!!! Think about it...


Well, I am going to quit rambling for now. I will post again sometime soon. All I can ask is that you continue to ask God for healing and favor for the Rawls family. Madison is still facing another surgery and other medical complications we will probably go into further detail further down the road. However, make no mistake that she is an answer to prayer and an example of God's love, grace, and mercy!!!

Remember the bible teaches us we were made in the image of God, so Madison is beautiful and perfect in her own right! I can't wait to introduce her to many, many of you.

Thank you for your prayers!

All my love,

Dustin

Friday, June 18, 2010

Final Moments at VUMC

Hey Readers...

It is Dustin again, and I haven't updated this blog in right about four days now. If you have been reading this regularly, you have come to either learn deal with or dread my wordiness. So, I have decided to keep the updates simple and divide it into just two sections: pre-discharge and post-discharge. I will get to post-discharge in another post. For right now, we are going to look at the remainder of time spent at VUMC and then talk about our return home. I hope you enjoy, and above all I hope God is glorified through Madison's story!

I remember arriving to VUMC as scheduled early Tuesday morning, and we stayed with Madison until around lunchtime. We were visited by a lactation specialist who said one of the most important things to remember during this time is that mom gets ample sleep and fluids. So, I convinced Mandy to return the Hospital Hospitality House (HHH - the room VUMC set up for us to stay in Nashville) for some lunch and a nap. We told our nurse we would return for Madison's three o'clock feeding. Sometime around 1:30, while Mandy was sleeping, I received a call from Madison's attending physician that the NICU had decided to release her to a general family room so that we could stay with her overnight. I decided not to wake Mandy and just tell her when she was scheduled to wake up. Her alarm buzzed at 2:30, and upon hearing the news, she began packing smaller bags for us to stay overnight at the hospital. While she was doing that, I went and explained to the HHH caretaker on-call that VUMC was encouraging us to stay overnight at the hospital, but that didn't guarantee a Wednesday discharge. He graciously allowed us to keep the room through the night at HHH even though we weren't going to sleep there. Madison had been moved to what I called the Penthouse Suite, room 7312 on the top floor, living the high-life. It was nice to be in this the big family room, and there was a large sofa that was to pull out into a bed for Mandy and me to sleep in together (or so we thought).

We had learned since the hospital had re-admitted Madison to the seventh floor, we could remain their until her discharge. Knowing this, I had decided to return to HHH to pack everything, clean up, and follow the after hours check-out procedures. After about twenty minutes of organizing and cleaning, my parents arrived to help me finish the job and pick up some of the heavier items, because I am still not supposed to lift anything heavy (remember the fridge and TV?). We finished, and I hugged and kissed them goodbye to return to the Penthouse. Little did I know what the immediate future held...

Remember me mentioning the pull out sofa sleeper sofa bed? Well, my parents had actually helped pull out he sofa before meeting me at HHH, and my mother (God love her) saw an immediate problem (I guess once you are a mommy, you will allows be a mommy!!). That sleeper sofa was actually a twin size slab of cement covered in an inch of foam. You see, before moving to the Penthouse, our nurses told us they would arrange for me to have a pull out cot of some sort. They knew of my recent surgeries and assured us it would all be taken handled. After seeing the true size of the sleeping apparatus, my mother approached a nurses aid to rectify the situation. The aid graciously told my mom that was all they could provide because of fire code regulations and that if push came to shove, Mandy could climb up into the crib and sleep with Madison. Hearing my parents tell me all this at HHH was hard to comprehend, but I got it after returning to the Penthouse myself. Most of you all know me... I am pretty much a big teddy bear all of the time. However, I don't shy away from some friendly confrontation every now and again. So, after assessing the situation myself, I decided to go talk to someone. I found the same aid my mom had spoken to and began my angle to rearrange our circumstances. I got the same story as mom that cots are allowed in different parts of the hospital but not on our floor. At one point, I actually laughed in her face when she told me that that pull out cushion was "a queen size bed." I am not a small man, and I could barely get the left half of my body settled on this wonderful pull out apparatus... cushion... bed... queen size temperpedic... I have rarely laughed at someone to their face, but I did it. I laughed at her, to her face, and she knew it. I actually had to give up the offensive for a minute to go collect myself because I was really laughing to hard to think.

FUNNY TWIST TIME!!!

I stumbled back into the room and recounted everything to Mandy. At the end of my story, you would have thought she had been indwelt my beelzebulb himself. I saw horns grow out of Mandy's head and steam leave her ears. She said "OH NO!!! I'll be right back and we'll get this taken care of..." I was literally scared for whoever she landed on, because they didn't know what was coming. We later had a laugh about this, because Mandy had confessed that (hormones and all) she entered the flesh in .0125 seconds and was about to unleash on someone (it is funny retyping this, because I am replaying this in my mind's eye). As soon as Mandy opened the door, in walked our regular nurse and the charge nurse (the nurse in charge of the floor - hence charge nurse). They walked in very coolly and said "I hear we have some sleeping arrangement issues." Mandy should have just looked at the them and said "sure do, here's your sign." After some vigorous negotiations, they decided to switch Madison's mini-bed for a bassinet and roll in a hospital bed for Mandy to sleep in. We agreed, Mandy's blood pressure returned to acceptable human levels, and we decided it was time to find something on television to watch. Everything was corrected, and the Rawls family was finally able to spend their first night as a family under one roof. All in all, it was pretty special.

Madison had a great night, sleeping most of it. The doctor came to visit early in the a.m. She told us she would like to see Madison have two more good feeds, and then we would be able to be discharged in the early afternoon. In those final hours, we must have seen at least a half a dozen different people all specializing in some area pertaining to Madison's Spina Bifida. In between those drop in visits, we tried to catch as many short naps as possible. At the end of it all, I think I remember us pulling out of VUMC's parking garage right around 3:30 pm. I will admit it felt good.

We treating ourselves to a McDonald's Frappe and headed for my parents house in Brentwood for some dinner and family time. Everybody and anybody who couldn't or didn't visit Madison in the hospital was at my parents house that night. I warned everybody long before dinner started that we planned to leave by 7:30 so that we could return to our home. The funny part was we began saying our goodbyes at 7:00, and we didn't pull out of the driveway until until about 7:50. Every time we inched closer to the door to leave, the crowd moved along with us. I think I might have hugged everybody bye about three times a piece. Funny, but if there is one thing our immediate and extended family does well, it is we take care of our own.

Altogether, we had spent nine days away from home and eight of those were at VUMC and HHH. We were ready for our home, our stuff, and our mattress.

Home sweet home here we come!!!

DR

Monday, June 14, 2010

An Opportunity for Faith

Happy Monday All,

I am so thankful for this blog, so that Mandy and I can communicate all the information about Madison to everyone without having to make tons of calls everyday. Today's update hits close to home for us, and as the title suggests, today's update presents us all for an opportunity to exhibit some faith in the Lord.

As I think I mentioned, Madison is eating more with each feed, and therefore Mandy is almost constantly behind on the eight ball on pumping. Bless Mandy's heart, she set her alarm to wake up during the night and early mornings to hopefully get ahead on milk. After the last morning pump, I brought the milk over to the NICU so Madison would have enough food for they day, because we knew we would be gone quite a bit of the day at Mandy's post-op appointment to get her C-section staples removed. The nurse who removed Mandy's staples said the site looked good and was right on schedule healing. We left 100 Oaks right a lunchtime and decided to go and have a little lunch date together knowing we had left Madison enough food for the day. After lunch at Demos' in downtown Nashville, we headed back the HHH for a quick power nap.

During the day, Madison was visited by the ultrasound technician to get another scan on her ventricle size. She was also visited by an audiologist and passed her first hearing test. We will test her again in six months time because of her Spina Bifida. After the power nap, we were anxious to return and see about the test results. I let Mandy out at the door, and she got settled into the NICU before me. On my way up to the room, I ran into Dr. Tulipan in the hallway talking about Madison. I reintroduced myself, and we got right to it.

The first bit of news wasn't what I wanted to hear. Her ventricle size had doubled from a 4 to an 8 since the measurement at birth. I know the numbers don't mean anything to you all, but I am sure that you can understand based on all these posts that smaller and stable numbers are what we want. However, Dr. Tulipan stated that even though the size had double, she is still considered to be on the within normal limits of size. However, he said the writing on the wall indicated that he believed with 90-95% certainty, Madison was going to require surgery to place drainage shunts in the brain. However, the silver lining here is that he wants to wait 2-3 weeks to make certain, which means we are scheduled to possibly get discharged on Wednesday. Plus, the longer babies want before having shunt surgery, the odds increase for an overall successful procedure. So, after getting the word from neuro-surgery, they cleared us for discharge with monitoring from our local pediatrician with a follow up appointment soon. There is a possibility that Mandy and I will get moved to a different family sleep room on campus for tomorrow so that Madison will get to stay with us for one complete night.

I know that many, many of you reading this spent part of your day praying and believing for a good scan and complete discharge with no strings attached. Mandy and I prayed for the same thing, but we also prayed that our Father's will be done and name be glorified. I honestly don't have a clue who all reads this blog, but I want to make it perfectly clear that Madison's story of healing and strength is really God's story of grace, love, and mercy. Make no mistake, for anybody reading these words now, there is a God, and He created everything for His glory. When we first learned of Madison's Spina Bifida mid-January, we were told there was a good chance she had a genetic disorder called trisomy 13 or 18. To put it mildly, that would have meant she was a terminal baby and wouldn't have lived past the age of two. Since then, Madison has been bathed in daily from Nashville to Nolensville, Cookeville to Chattanooga, and Rockville to Romania. These prayers combined with God's grace, love, and mercy are the reasons for overall outstanding health and prognosis. Prayer changes people's lives, and it saves their lives both physically and spiritually. Don't get me wrong, I am not talking about some hocus-pocus or voodoo Christian movement. God and Jesus are very real and answer prayer every second of every day to bring people to the realization that He loves us and wants us to believe in him!

Let me challenge you... if you have kept up with any part of this blog, and if anything about Madison's story has tugged on your heart strings, could that be God? If so, why don't you just say a short prayer to yourself for Madison's health and that God reveal the truth to you. No big deal, but just keep asking those two very simple things on a daily basis and see what happens in your life.

Two simple truths to remember:

1 Samuel 1:27 says "I prayed for this child, and the LORD has granted me what I asked of him."

John 14:6 says "I am the way and the truth and the life. No one comes to the Father except through me."

God's ways are not our ways. He sometimes chooses to heal immediately, sometimes He chooses to work through surgeons, and even sometimes He chooses not to heal. Whatever He chooses is to bring people to the reality that He exists and wants you to believe in Him.

Ask Him for healing... Ask Him for truth!

Mandy and I have not lost faith in this storm... He has grown us up and shown us parts of Him never before seen by us. What more will He show you?

All our love,

Dustin and Mandy