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
Wednesday, July 28, 2010
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
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
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!
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
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
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