Pics made by MVS Photography
Monday, June 28, 2010
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.
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
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
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
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
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
Sunday, June 13, 2010
Thank God for Parents
Hey Friends...
I submitted a post yesterday for Thursday and Friday, so I will now do my best to update everyone about yesterday and today. First, Madison is doing great! Quite possibly better than mommy and daddy both!!! So, here we go:
Saturday June 12, 2010
"Grandparents Coming Through"
If you have been keeping up, you know about the debacle of Friday's move from the hospital room to the family sleep room back to the hospital room and then to the Hospital Hospitality House (HHH). During that process, we learned that we would not have access to a breast pump at the HHH like we would have at VUMC's family room. This created yet another dilemma because Mandy needed to be pumping milk every two to three hours. Late Friday evening, we tossed around any number of ideas to remedy this problem, but no plans really stuck. Our next door neighbor has a key to our house, so we were trying to work out a plan for Mandy's parents to swing by our house on their way back into Nashville. The were going the long way to avoid Bonnaroo traffic on interstate 24. We knew our neighbor was going to be out of town, but they wanted to try anyway. They arrived at our house in Cookeville yesterday morning to double check they weren't home. True to form, no luck, and they began to finish the trek to Nashville. (The most frustrating part to the this whole thing is that Mandy and I made a key to give to them for just such occasions, but we forgot to give it to them during the couple of days around delivery. I guess we had something else on our minds!) After that attempt failed, we checked in with my parents who said that if they couldn't get in to our house, they would take a motorcycle trip to Cookeville and get the pump. They left around mid-morning and arrived in Cookeville around lunch time. We had turned up our air in the house to 82 degrees to save a little on our electric bill, and after a few minutes of hunting items in our house, my mom and dad were a little toasty. They found that our power had gone off at some point in time and reset everything in the house, including blowing a breaker in our garage. The problem there is we have an extra refrigerator in the garage, and everything in it was ruined. My parents cleaned that up for us, and began their return trip to Nashville.
We love our parents very much, and they have shown us perfect examples of sacrifice and love during this time (and our whole lives for that matter!). If Mandy and I follow the examples our parents set before us, we should do pretty well with Madison. Our parents have cared for us physically, emotionally, monetarily, and spiritually during this time, and Mandy and I would definitely not be well off as we are now without them. Dads and Moms... thank you for loving us and your granddaughter so much!!!
To continue the story of how much our parents care for us, when my parents arrived at HHH Saturday night, they had a Yukon full of goodies for us. My aunt Diane Davis (my dad's little sis) had pulled out a mini-refrigerator she had from college (which means it is almost as old as me---he he) that we could keep some drinks and the milk mommy pumps for Madison. They had also surprised us by bringing a little television to set up in the room. That place is a full fledged dorm room now. All we need is some black lights, a lava lamp, and some glow in the dark posters and stars for the ceiling. In all seriousness, those two additions made the room much more like home especially with providing us a way to keep Madison's breakfast, lunch, and dinner unspoiled until we can get it VUMC. This was crucial, because Mandy has been barely able to keep ahead of Madison's feeding schedule. This way, we could story extra meals for Madison and bring it over as needed. Awesome surprise Diane! Thank you and we love you so much!
Sunday June 13, 2010
Saturday night was the first long night for daddy. Madison had caught up with Mandy's pumping, so mommy had to set an alarm for 1:00 a.m. to provide Madison some breakfast. We arrived back at HHH around 10:30 pm, so mom didn't get asleep until around 11. I found myself wired, and I couldn't go to sleep before mom woke back up. After she finished pumping, I let her go back to sleep and I made the trip to the NICU with the goods. Mandy had produced enough food for Madison's 3 and 6 am meals. I stole some good early morning kisses and returned to HHH around 2:15 am. For some reason, I was wired at that point, and I didn't fall asleep until about 3:30 am. Mandy wanted to get up at 6:00 am and get ready for the day. We decided I would drive her over to the NICU and return for some sleep. Only problem was that I couldn't find the rest I was looking for. After lying in bed for hours, I decided I needed to get some early lunch to help my system power down for a midday nap.
Just after pulling through the Arby's drive thru, I called Mandy to check in. Her mom answered the phone, and she told me that Mandy was really upset about something. I could hear Mandy crying in the background, and I could really only understand that Madison's face was swollen pretty badly. I told them I was on the way. After I arrived, I learned that the IV in her head had blown up and access fluid begin the collect on the right side of her face especially in and around her eye. It was swollen shut, and mommy was having a very difficult time with it. Mandy's mom and I convinced her to go get some lunch while we attended to Madison. The charge nurse arrived and immediately said that there wasn't really anything to worry about, but we definitely needed to remove the head IV and identify another vein soon. After some inspection, she found a good spot on her right wrist. Before we got started, they told me this was really going to make her upset and to prepare myself. Pulling the IV out of her head starting the discomfort, but beginning the new IV on her wrist made my sweet little angel turn a little more devilish. She turned a shade of red that probably isn't natural, and her heart spiked to 210 bpm. The only thing I new to try was talking to her in hopes she recognized and was comforted by my voice. I am proud to announce (with all humility), I did a stellar job. I just began to talk to hear (not baby talk either) about what she was going through and why. I just told her what the nurses were doing and kept apologizing for being the cause of her pain. I told her it was the best thing for her, and I would like to think she understood every word. After completing the IV switch, she calmed back down and returned to a normal color of human being. After the fiasco, we decided to go ahead and feed her to continue help calming her. That was the first time I was able to feed her, and it was a absolute joy. I definitely didn't feel tired anymore, well not at least until she was about 75% through the feed. Then, my head began a little bobbing and weaving and the rocking chair became a little more stationary. It was all good, because we were napping together!!!
You have been forewarned about the next little section: Proceed with caution!
During her nap, Madison acted like her mommy and farted on my hands a few times. One of those times seemed a little juicy, so it was decided that I was going in for my first solo diaper change. I will proudly announce I didn't gag, and I learned that wiping goes from front to back. Who knew? I will also say that my little girl fought me to keep her legs shut, and she had better keep that habit up for seventy hears. During the change, I was really impressed and happy with how much leg strength she displayed. She really did push and pull to keep her legs tucked into the fetal position, so that made me happy to see her lower limb strength first hand. That has been one of our worries all along with the Spina Bifida, and I really think it is slowly becoming a non-issue. After getting everything switched and clean, I returned to HHH for a nap. Mandy met me shortly after, and we both had pretty good afternoon naps. We retuned to the NICU after my parents brought us some home cooked dinner, and Madison finally latched to Mandy for the first official breast feed. Awesome night of mommy and Madison creating another bond.
Well, that is it for today! We have head ultrasound scans tomorrow to learn of her ventricle size. As soon as we find out the results, we will share that info for the masses. Please pray that have stablized and we can take Madison home this week.
We love you all, and we still give our Lord and Father praise for every blessing on the journey!
"Every good and perfect gift comes from the Lord!" -James 1:17
Dustin and Mandy
I submitted a post yesterday for Thursday and Friday, so I will now do my best to update everyone about yesterday and today. First, Madison is doing great! Quite possibly better than mommy and daddy both!!! So, here we go:
Saturday June 12, 2010
"Grandparents Coming Through"
If you have been keeping up, you know about the debacle of Friday's move from the hospital room to the family sleep room back to the hospital room and then to the Hospital Hospitality House (HHH). During that process, we learned that we would not have access to a breast pump at the HHH like we would have at VUMC's family room. This created yet another dilemma because Mandy needed to be pumping milk every two to three hours. Late Friday evening, we tossed around any number of ideas to remedy this problem, but no plans really stuck. Our next door neighbor has a key to our house, so we were trying to work out a plan for Mandy's parents to swing by our house on their way back into Nashville. The were going the long way to avoid Bonnaroo traffic on interstate 24. We knew our neighbor was going to be out of town, but they wanted to try anyway. They arrived at our house in Cookeville yesterday morning to double check they weren't home. True to form, no luck, and they began to finish the trek to Nashville. (The most frustrating part to the this whole thing is that Mandy and I made a key to give to them for just such occasions, but we forgot to give it to them during the couple of days around delivery. I guess we had something else on our minds!) After that attempt failed, we checked in with my parents who said that if they couldn't get in to our house, they would take a motorcycle trip to Cookeville and get the pump. They left around mid-morning and arrived in Cookeville around lunch time. We had turned up our air in the house to 82 degrees to save a little on our electric bill, and after a few minutes of hunting items in our house, my mom and dad were a little toasty. They found that our power had gone off at some point in time and reset everything in the house, including blowing a breaker in our garage. The problem there is we have an extra refrigerator in the garage, and everything in it was ruined. My parents cleaned that up for us, and began their return trip to Nashville.
We love our parents very much, and they have shown us perfect examples of sacrifice and love during this time (and our whole lives for that matter!). If Mandy and I follow the examples our parents set before us, we should do pretty well with Madison. Our parents have cared for us physically, emotionally, monetarily, and spiritually during this time, and Mandy and I would definitely not be well off as we are now without them. Dads and Moms... thank you for loving us and your granddaughter so much!!!
To continue the story of how much our parents care for us, when my parents arrived at HHH Saturday night, they had a Yukon full of goodies for us. My aunt Diane Davis (my dad's little sis) had pulled out a mini-refrigerator she had from college (which means it is almost as old as me---he he) that we could keep some drinks and the milk mommy pumps for Madison. They had also surprised us by bringing a little television to set up in the room. That place is a full fledged dorm room now. All we need is some black lights, a lava lamp, and some glow in the dark posters and stars for the ceiling. In all seriousness, those two additions made the room much more like home especially with providing us a way to keep Madison's breakfast, lunch, and dinner unspoiled until we can get it VUMC. This was crucial, because Mandy has been barely able to keep ahead of Madison's feeding schedule. This way, we could story extra meals for Madison and bring it over as needed. Awesome surprise Diane! Thank you and we love you so much!
Sunday June 13, 2010
Saturday night was the first long night for daddy. Madison had caught up with Mandy's pumping, so mommy had to set an alarm for 1:00 a.m. to provide Madison some breakfast. We arrived back at HHH around 10:30 pm, so mom didn't get asleep until around 11. I found myself wired, and I couldn't go to sleep before mom woke back up. After she finished pumping, I let her go back to sleep and I made the trip to the NICU with the goods. Mandy had produced enough food for Madison's 3 and 6 am meals. I stole some good early morning kisses and returned to HHH around 2:15 am. For some reason, I was wired at that point, and I didn't fall asleep until about 3:30 am. Mandy wanted to get up at 6:00 am and get ready for the day. We decided I would drive her over to the NICU and return for some sleep. Only problem was that I couldn't find the rest I was looking for. After lying in bed for hours, I decided I needed to get some early lunch to help my system power down for a midday nap.
Just after pulling through the Arby's drive thru, I called Mandy to check in. Her mom answered the phone, and she told me that Mandy was really upset about something. I could hear Mandy crying in the background, and I could really only understand that Madison's face was swollen pretty badly. I told them I was on the way. After I arrived, I learned that the IV in her head had blown up and access fluid begin the collect on the right side of her face especially in and around her eye. It was swollen shut, and mommy was having a very difficult time with it. Mandy's mom and I convinced her to go get some lunch while we attended to Madison. The charge nurse arrived and immediately said that there wasn't really anything to worry about, but we definitely needed to remove the head IV and identify another vein soon. After some inspection, she found a good spot on her right wrist. Before we got started, they told me this was really going to make her upset and to prepare myself. Pulling the IV out of her head starting the discomfort, but beginning the new IV on her wrist made my sweet little angel turn a little more devilish. She turned a shade of red that probably isn't natural, and her heart spiked to 210 bpm. The only thing I new to try was talking to her in hopes she recognized and was comforted by my voice. I am proud to announce (with all humility), I did a stellar job. I just began to talk to hear (not baby talk either) about what she was going through and why. I just told her what the nurses were doing and kept apologizing for being the cause of her pain. I told her it was the best thing for her, and I would like to think she understood every word. After completing the IV switch, she calmed back down and returned to a normal color of human being. After the fiasco, we decided to go ahead and feed her to continue help calming her. That was the first time I was able to feed her, and it was a absolute joy. I definitely didn't feel tired anymore, well not at least until she was about 75% through the feed. Then, my head began a little bobbing and weaving and the rocking chair became a little more stationary. It was all good, because we were napping together!!!
You have been forewarned about the next little section: Proceed with caution!
During her nap, Madison acted like her mommy and farted on my hands a few times. One of those times seemed a little juicy, so it was decided that I was going in for my first solo diaper change. I will proudly announce I didn't gag, and I learned that wiping goes from front to back. Who knew? I will also say that my little girl fought me to keep her legs shut, and she had better keep that habit up for seventy hears. During the change, I was really impressed and happy with how much leg strength she displayed. She really did push and pull to keep her legs tucked into the fetal position, so that made me happy to see her lower limb strength first hand. That has been one of our worries all along with the Spina Bifida, and I really think it is slowly becoming a non-issue. After getting everything switched and clean, I returned to HHH for a nap. Mandy met me shortly after, and we both had pretty good afternoon naps. We retuned to the NICU after my parents brought us some home cooked dinner, and Madison finally latched to Mandy for the first official breast feed. Awesome night of mommy and Madison creating another bond.
Well, that is it for today! We have head ultrasound scans tomorrow to learn of her ventricle size. As soon as we find out the results, we will share that info for the masses. Please pray that have stablized and we can take Madison home this week.
We love you all, and we still give our Lord and Father praise for every blessing on the journey!
"Every good and perfect gift comes from the Lord!" -James 1:17
Dustin and Mandy
Saturday, June 12, 2010
Lots of Happenings in a Few Days
Hey Everyone,
Sorry I didn't post the last two nights. The last two days have been crazy, and by the time I was ready to post at the end of each day, I couldn't keep my eyes open. So, I am going to back track to Thursday and Friday as best as I can, so you all will know everything we know. First, we love you all so much for your prayers for the Rawls Family. Madison is a testament to the power of prayer and the love, mercy, and GRACE of our Lord (There was a reason for picking that name huh?).
Thursday 6-10-10
We made it over to the NICU mid-morning. As soon as we got there, we were greeted by a specialist named Lita. Lita puts in PICC lines, which are central IV lines that feed directly into her superior vena cava. PICC lines are more stable and provide better access for medicines, fluids, etc. Lita told us that PICC lines are a good thing, and that she would return in a few minutes to explain everything to us. We weren't prepared for what we were about to see when we entered Madison's room. Sometime during the night, they had removed her IV in her hand, and put one in her little head. After seeing the initial shock of an IV inserted in her head, the nurse came in and explained why it was actually much better for her that her hand IV's and she was in now discomforted by it. Mommy and daddy cried for a little while, but we finally came around to understand it was a good thing for her. We learned that one of her veins in the side of her head is much larger, she is less likely to pull it out, and it is also less likely to need replacing on its own. So, we managed that finally get over that shock and listen to Lita explain PICC lines to us. I signed the authorization (which is a little crazy too, that anybody would let me sign for anything), and we were minutes away from proceeding with putting in the PICC line, when once again I believe God intervened!
One of Dr. Tulipan's associates (can't remember your name Doc... sorry), and she informed us that Dr. Tulipan had changed his mind about the necessity of putting in the PICC line. PICC lines are used when it is expected that the baby will need long term doses of antibiotics because of multiple surgeries. Dr. Tulipan's associate informed us that they had changed there minds about the PICC line because (based on the latest scans and data) her chances for shunt surgery were decreasing. WOW!!! So much had happened in a short amount of time, it was incredible! So, we quickly learned we were putting Madison's PICC on hold, and we also learned that they will perform the next scans on Madison head on Monday June 14. If the scans look good Monday, they said there is a good shot we will go home mid-week next week. If the scans show her ventricles are dilated enough for surgery, she will have the procedure mid week next week, and that will extend our time at VUMC for at least another week. HOWEVER, that will not happen and we will all see our Lord show His power in the coming days.
Madison remained sedated all day Thursday, so whenever we visited she was asleep. A sleeping little Angel. Her surgical incision site continued to look better and the swelling was going down, so that was great. We returned to the NICU after a midday nap, and Mandy was able to hold Madison for the first time since surgery. Mandy pulled her gown down a bit so Mommy and Daughter could feel each others skin. It was a pretty awesome moment, because they were finally able to begin the bonding process. After about 45 - 60 minutes, mommy needed to return to the Hospital room because she was really starting to hurt from C-section surgical pain. We returned and both of us medicated and feel asleep almost immediately.
Friday 6-11-10
We woke sometime between 9-10. Mandy hurt and didn't feel well, so she pumped some breast milk for me to take to Madison. I was so excited that I was going to get to see and hold Madison, I felt like I was about to go out on a date with her. I showered, shaved, brushed, powdered, spritzed, and any other bathroom term you can throw in here. I had an excitement pulsing through me that covered up any residual pain from my surgery just a few weeks ago. I limped/walked over to the NICU as fast as I could. By the time I got there, I had actually worked up a good little sweat from the pace and anticipation. I took a couple of minutes to cool down, and then I decided to take my shirt off and put on gown on so that Madison could lay on my chest and we could feel each other too. My goodness, I am going to like this daddy/daughter thing. I could have sat there all day. I completely lost track of time... I arrived sometime around 10 am, and it was getting really close to lunch time. I was able to hang around long enough to meet with the rounding physicians. I learned the latest and greatest news about Madison. For a newborn Spina Bifida baby, they are extremely happy with Madison's ability to almost completely empty her bladder on her own with the use of a catheter. We will have to be trained on how to insert a catheter into Madison after getting discharged. After the Drs. left, I begrudgingly had to return Madison to her pod to get back to mommy. I had been gone so long, Mandy had gotten into the shower by herself. I helped clean her up, and we got some lunch and returned to the NICU for the afternoon.
... and then the craziness began!
Mandy was getting discharged yesterday. During the day, we got connected with Madison's social worker. She arranged for us to have a family sleeper room next to the NICU, so on our way back to the NICU I put almost all of our stuff on Mandy's wheelchair to bring with us to our new room. Mandy's cousins were also visiting in our room, and they helped me carry some of the heavier bags. We arrived at our new home around 3:00 pm and got everything unloaded in our new digs. I decided to stay there and rest while Mandy, her cousins, and other visitors rotated in and out to see Madison. I got a call from our social worker at 4:00 that she had been contacted by the Hospital Hospitality House (HHH) in Nashville, and they had a room open up for us. A decision had to be made by 5:00. The Family room was literally 50 yards from the NICU, but they could only guarantee the room through Sunday. The HHH was 3 blocks away from VUMC, but once we signed for the room, it was ours as long as we needed it. We were in a dilemma, and I didn't know what to do! I talked with Mandy, our social worker, and Madison's nurse to get opinions. Our SW and nurse said we should take it, because it was a sure thing and we still don't know how long we may be here. Mandy and I were really unsure, (Mandy more so than me), but I decided to take the HHH room, I literally had minutes to get over there and sign the paperwork. The shuttle service that takes patients to HHH wasn't running on schedule, so my blood pressure went up. I finally arrived ten minutes after five, and the caregiver on call let me sign for everything and immediately return to the Children's Hospital.
As soon as I walked onto the NICU floor, someone at the front desk told me that I needed to get out of the family now immediately because they had already given the room to another family. So, I had to pack everything back on the wheelchair use another set of friends to move everything back to Mandy's hospital room because we still technically weren't discharged from the hospital yet. We arrive back in her room, get discharged, and take everything down to the car. I took us a few minutes to get there, and we had to call my parents to come help us unload because I couldn't and shouldn't have picked up some of our heavier luggage. The HHH is about a ten minute drive (without traffic) because of the winding roads and traffic lights, and the room is bare bones. However, it is free and guaranteed, and once again (I think) we were shown a glimpse of God because we were given room #7!!!
After getting settled and having dinner, we returned to the NICU one last time. By this time, Madison was really beginning to rouse because she had stopped her pain management medicine regimen that morning. After playing with her for a while, I really needed to get mommy back to bed. However, Madison was wide awake and alert, and mommy didn't (and almost couldn't) leave!! She felt like she was leaving her alone since it was the first time she had really been awake since the surgery. I literally pushed and pulled Mandy out of the NICU to return to HHH. She cried the whole way and quite awhile after getting back. Bless her heart, I was broken up over that. We got mommy calmed down and medicated so she could rest. The beds were comfortable, and we both needed a real good and long nights rest. So, that pretty much wrapped Friday up.
I will try and post Saturday's info tonight or first thing tomorrow morning, but I will once again just mention God's fingerprints on what we have realized so far...
Madison has 7 letters
She weighed 7lbs. 7oz. at birth
We were assigned room #7 at HHH
On a beauty scale of 1-7, Madison is a 7+
We love you all very much, and please overlook any grammatical missteps. I am not really proofing these things, and I taught myself how to type (which says enough).
Madison Grace is going great, and the prayers she receives each day are nourishment enough for her little body and spirit. I continue to pray that our Lord receives nothing but honor, glory, and praise during every step of this process!
With tears in my eyes, all my love...
Dad
Sorry I didn't post the last two nights. The last two days have been crazy, and by the time I was ready to post at the end of each day, I couldn't keep my eyes open. So, I am going to back track to Thursday and Friday as best as I can, so you all will know everything we know. First, we love you all so much for your prayers for the Rawls Family. Madison is a testament to the power of prayer and the love, mercy, and GRACE of our Lord (There was a reason for picking that name huh?).
Thursday 6-10-10
We made it over to the NICU mid-morning. As soon as we got there, we were greeted by a specialist named Lita. Lita puts in PICC lines, which are central IV lines that feed directly into her superior vena cava. PICC lines are more stable and provide better access for medicines, fluids, etc. Lita told us that PICC lines are a good thing, and that she would return in a few minutes to explain everything to us. We weren't prepared for what we were about to see when we entered Madison's room. Sometime during the night, they had removed her IV in her hand, and put one in her little head. After seeing the initial shock of an IV inserted in her head, the nurse came in and explained why it was actually much better for her that her hand IV's and she was in now discomforted by it. Mommy and daddy cried for a little while, but we finally came around to understand it was a good thing for her. We learned that one of her veins in the side of her head is much larger, she is less likely to pull it out, and it is also less likely to need replacing on its own. So, we managed that finally get over that shock and listen to Lita explain PICC lines to us. I signed the authorization (which is a little crazy too, that anybody would let me sign for anything), and we were minutes away from proceeding with putting in the PICC line, when once again I believe God intervened!
One of Dr. Tulipan's associates (can't remember your name Doc... sorry), and she informed us that Dr. Tulipan had changed his mind about the necessity of putting in the PICC line. PICC lines are used when it is expected that the baby will need long term doses of antibiotics because of multiple surgeries. Dr. Tulipan's associate informed us that they had changed there minds about the PICC line because (based on the latest scans and data) her chances for shunt surgery were decreasing. WOW!!! So much had happened in a short amount of time, it was incredible! So, we quickly learned we were putting Madison's PICC on hold, and we also learned that they will perform the next scans on Madison head on Monday June 14. If the scans look good Monday, they said there is a good shot we will go home mid-week next week. If the scans show her ventricles are dilated enough for surgery, she will have the procedure mid week next week, and that will extend our time at VUMC for at least another week. HOWEVER, that will not happen and we will all see our Lord show His power in the coming days.
Madison remained sedated all day Thursday, so whenever we visited she was asleep. A sleeping little Angel. Her surgical incision site continued to look better and the swelling was going down, so that was great. We returned to the NICU after a midday nap, and Mandy was able to hold Madison for the first time since surgery. Mandy pulled her gown down a bit so Mommy and Daughter could feel each others skin. It was a pretty awesome moment, because they were finally able to begin the bonding process. After about 45 - 60 minutes, mommy needed to return to the Hospital room because she was really starting to hurt from C-section surgical pain. We returned and both of us medicated and feel asleep almost immediately.
Friday 6-11-10
We woke sometime between 9-10. Mandy hurt and didn't feel well, so she pumped some breast milk for me to take to Madison. I was so excited that I was going to get to see and hold Madison, I felt like I was about to go out on a date with her. I showered, shaved, brushed, powdered, spritzed, and any other bathroom term you can throw in here. I had an excitement pulsing through me that covered up any residual pain from my surgery just a few weeks ago. I limped/walked over to the NICU as fast as I could. By the time I got there, I had actually worked up a good little sweat from the pace and anticipation. I took a couple of minutes to cool down, and then I decided to take my shirt off and put on gown on so that Madison could lay on my chest and we could feel each other too. My goodness, I am going to like this daddy/daughter thing. I could have sat there all day. I completely lost track of time... I arrived sometime around 10 am, and it was getting really close to lunch time. I was able to hang around long enough to meet with the rounding physicians. I learned the latest and greatest news about Madison. For a newborn Spina Bifida baby, they are extremely happy with Madison's ability to almost completely empty her bladder on her own with the use of a catheter. We will have to be trained on how to insert a catheter into Madison after getting discharged. After the Drs. left, I begrudgingly had to return Madison to her pod to get back to mommy. I had been gone so long, Mandy had gotten into the shower by herself. I helped clean her up, and we got some lunch and returned to the NICU for the afternoon.
... and then the craziness began!
Mandy was getting discharged yesterday. During the day, we got connected with Madison's social worker. She arranged for us to have a family sleeper room next to the NICU, so on our way back to the NICU I put almost all of our stuff on Mandy's wheelchair to bring with us to our new room. Mandy's cousins were also visiting in our room, and they helped me carry some of the heavier bags. We arrived at our new home around 3:00 pm and got everything unloaded in our new digs. I decided to stay there and rest while Mandy, her cousins, and other visitors rotated in and out to see Madison. I got a call from our social worker at 4:00 that she had been contacted by the Hospital Hospitality House (HHH) in Nashville, and they had a room open up for us. A decision had to be made by 5:00. The Family room was literally 50 yards from the NICU, but they could only guarantee the room through Sunday. The HHH was 3 blocks away from VUMC, but once we signed for the room, it was ours as long as we needed it. We were in a dilemma, and I didn't know what to do! I talked with Mandy, our social worker, and Madison's nurse to get opinions. Our SW and nurse said we should take it, because it was a sure thing and we still don't know how long we may be here. Mandy and I were really unsure, (Mandy more so than me), but I decided to take the HHH room, I literally had minutes to get over there and sign the paperwork. The shuttle service that takes patients to HHH wasn't running on schedule, so my blood pressure went up. I finally arrived ten minutes after five, and the caregiver on call let me sign for everything and immediately return to the Children's Hospital.
As soon as I walked onto the NICU floor, someone at the front desk told me that I needed to get out of the family now immediately because they had already given the room to another family. So, I had to pack everything back on the wheelchair use another set of friends to move everything back to Mandy's hospital room because we still technically weren't discharged from the hospital yet. We arrive back in her room, get discharged, and take everything down to the car. I took us a few minutes to get there, and we had to call my parents to come help us unload because I couldn't and shouldn't have picked up some of our heavier luggage. The HHH is about a ten minute drive (without traffic) because of the winding roads and traffic lights, and the room is bare bones. However, it is free and guaranteed, and once again (I think) we were shown a glimpse of God because we were given room #7!!!
After getting settled and having dinner, we returned to the NICU one last time. By this time, Madison was really beginning to rouse because she had stopped her pain management medicine regimen that morning. After playing with her for a while, I really needed to get mommy back to bed. However, Madison was wide awake and alert, and mommy didn't (and almost couldn't) leave!! She felt like she was leaving her alone since it was the first time she had really been awake since the surgery. I literally pushed and pulled Mandy out of the NICU to return to HHH. She cried the whole way and quite awhile after getting back. Bless her heart, I was broken up over that. We got mommy calmed down and medicated so she could rest. The beds were comfortable, and we both needed a real good and long nights rest. So, that pretty much wrapped Friday up.
I will try and post Saturday's info tonight or first thing tomorrow morning, but I will once again just mention God's fingerprints on what we have realized so far...
Madison has 7 letters
She weighed 7lbs. 7oz. at birth
We were assigned room #7 at HHH
On a beauty scale of 1-7, Madison is a 7+
We love you all very much, and please overlook any grammatical missteps. I am not really proofing these things, and I taught myself how to type (which says enough).
Madison Grace is going great, and the prayers she receives each day are nourishment enough for her little body and spirit. I continue to pray that our Lord receives nothing but honor, glory, and praise during every step of this process!
With tears in my eyes, all my love...
Dad
Wednesday, June 9, 2010
Big Surgery Day
Hi again, it is Dustin posting the second night in a row. I am sorry if I mislead you last night hoping Mandy would be posting tonight. She is out of it, so you all are stuck with me again. It is 10:22 p.m., and here we go for June 9, 2010.
As of yesterday, we were under the impression Madison was going in for surgery at 11:00 am. We got in touch with her nurse in the NICU at 7:30, and she informed me they were going to be picking her up at about 7:45 to take her down for surgery. I rushed, and when I say rushed I really mean sort of hobbled, wobbled, and limped to the NICU ASAP. They arrived at just about 8:00 to pick her up to take to pre-op. I stayed with Madison and met with many doctors leading up to them taking her away to close up her Spina Bifida lesion.
I will be honest, I had done pretty well with everything up to that point. However, as I saw them wheeling her away to surgery, I was gripped by emotions that almost crippled me. Many of you will know what I mean when I say this, but I would have traded my entire body to be put in her place. The next hour was torture for me, and my family and friends that were here noticed that I was having a real tough time. The deepest parts of my soul were consumed with a love and concern that I have never felt (and you all know how I have cared for Mandy through surgeries - which she has of course done for me too), and I really struggled to control myself. So much so, that even as I type this message, to return to that place emotionally is difficult. My daughter, God's daughter and gift entrusted to us, was being carted off to finish the work the Father started in mommy's womb. After they took her away, I needed to return to the room to shower and collect myself. After more people showed up, we asked everyone to leave for just a few mommy-daddy moments. Mandy helped bring me down off the rafters, and I headed to the waiting room for Madison to return.
Running right on time, Madison returned to the post-op recovery room with her lesion removed and closed. Her little scar will match both mommy and daddy's back surgery scars, so it is very fitting. After Madison returned to the NICU, she has pretty much slept the rest of the day from the anesthesia. She was visited by quite a few friends an family, and we are hopeful that we will get to hold her tomorrow.
Okay... funny story of the day. So, I have really struggled with trying to continue my recovery from surgery while caring for Mandy and seeing as much of Madison as I can. At one point today, I desperately needed to self medicate and take a nap. Shortly after I took my medicine, two of our ministers from church showed up to visit. Apparently, I lingered a bit too long in hugging one of them. I won't mention any names, but his initials are LEE BAILEY witnessed by ROBERT WARD. Let it be known, Lee isn't comfortable in receiving Christ-like love from another brother, and I believe we should double check his credentials to be serving a body of believers. (I am laughing to myself right now) So, you all know me!!!! I am a hugger, and I wear my emotions on my sleeves. Apparently, I had just enough medicine on an empty stomach that created quite a moment. From my perspective, I just remember being excited to see them, so I hugged them (twice), and sent them on their way to Mandy and Madison in the NICU. It was only after I woke up from my nap, that I had been informed that my hug lingered a bit too long. In all honesty, if you ask me, I think it was Lee who latched on. He appeared on edge and needed some support. :) I hope you have a laugh with that one, because I sure have.
Last piece... We will monitor Madison's ventricle dilation on a day-to-day basis. Dr. Tulipan reviewed the ultra sound scan taken yesterday, and medically we still don't know. Our prayer, is that after correcting her spinal lesion, it will regulate the fluid and pressure to her ventricles and we'll begin to see a decrease in size in the coming days. Please join us in the prayer, because we would love nothing more than to disprove common medical science through God's unlimited power. Remember, our God created the laws of science and physics, so I ask who is better capable to manipulate His own creation.
"With man this is impossible, but with God ALL THINGS ARE POSSIBLE!"
Thank you Father for our miracle, and I ask you with all my heart and soul to heal this little angel according to your perfect will and purpose!
all the love a daddy can muster,
Dustin
As of yesterday, we were under the impression Madison was going in for surgery at 11:00 am. We got in touch with her nurse in the NICU at 7:30, and she informed me they were going to be picking her up at about 7:45 to take her down for surgery. I rushed, and when I say rushed I really mean sort of hobbled, wobbled, and limped to the NICU ASAP. They arrived at just about 8:00 to pick her up to take to pre-op. I stayed with Madison and met with many doctors leading up to them taking her away to close up her Spina Bifida lesion.
I will be honest, I had done pretty well with everything up to that point. However, as I saw them wheeling her away to surgery, I was gripped by emotions that almost crippled me. Many of you will know what I mean when I say this, but I would have traded my entire body to be put in her place. The next hour was torture for me, and my family and friends that were here noticed that I was having a real tough time. The deepest parts of my soul were consumed with a love and concern that I have never felt (and you all know how I have cared for Mandy through surgeries - which she has of course done for me too), and I really struggled to control myself. So much so, that even as I type this message, to return to that place emotionally is difficult. My daughter, God's daughter and gift entrusted to us, was being carted off to finish the work the Father started in mommy's womb. After they took her away, I needed to return to the room to shower and collect myself. After more people showed up, we asked everyone to leave for just a few mommy-daddy moments. Mandy helped bring me down off the rafters, and I headed to the waiting room for Madison to return.
Running right on time, Madison returned to the post-op recovery room with her lesion removed and closed. Her little scar will match both mommy and daddy's back surgery scars, so it is very fitting. After Madison returned to the NICU, she has pretty much slept the rest of the day from the anesthesia. She was visited by quite a few friends an family, and we are hopeful that we will get to hold her tomorrow.
Okay... funny story of the day. So, I have really struggled with trying to continue my recovery from surgery while caring for Mandy and seeing as much of Madison as I can. At one point today, I desperately needed to self medicate and take a nap. Shortly after I took my medicine, two of our ministers from church showed up to visit. Apparently, I lingered a bit too long in hugging one of them. I won't mention any names, but his initials are LEE BAILEY witnessed by ROBERT WARD. Let it be known, Lee isn't comfortable in receiving Christ-like love from another brother, and I believe we should double check his credentials to be serving a body of believers. (I am laughing to myself right now) So, you all know me!!!! I am a hugger, and I wear my emotions on my sleeves. Apparently, I had just enough medicine on an empty stomach that created quite a moment. From my perspective, I just remember being excited to see them, so I hugged them (twice), and sent them on their way to Mandy and Madison in the NICU. It was only after I woke up from my nap, that I had been informed that my hug lingered a bit too long. In all honesty, if you ask me, I think it was Lee who latched on. He appeared on edge and needed some support. :) I hope you have a laugh with that one, because I sure have.
Last piece... We will monitor Madison's ventricle dilation on a day-to-day basis. Dr. Tulipan reviewed the ultra sound scan taken yesterday, and medically we still don't know. Our prayer, is that after correcting her spinal lesion, it will regulate the fluid and pressure to her ventricles and we'll begin to see a decrease in size in the coming days. Please join us in the prayer, because we would love nothing more than to disprove common medical science through God's unlimited power. Remember, our God created the laws of science and physics, so I ask who is better capable to manipulate His own creation.
"With man this is impossible, but with God ALL THINGS ARE POSSIBLE!"
Thank you Father for our miracle, and I ask you with all my heart and soul to heal this little angel according to your perfect will and purpose!
all the love a daddy can muster,
Dustin
Tuesday, June 8, 2010
Our Miracle has Arrived!
Good Evening Everyone!!! This is Dustin posting the first official update on Madison's blog, so you will have bear with my wordiness and length. First off, what a day, and our Lord God is awesome! He showed His power and mercy today in ways that can only bring tears to my eyes.
It is just a little bit after 8:00 pm, and I just got back to Mandy's room. I will do my best to recount the days activities from my perspective...
Mandy woke up at 5:00 am, so that she could put on her makeup before coming to the hospital. She said that if she was going to be in pictures all day (with or without Madison), she wasn't going to look like death. Pretty funny if you ask me, but I really always think Mandy is beautiful, but I guess I am biased. We left Brentwood at 6:45 and arrived at Vanderbilt around 7:20. As soon as they checked us into Mandy's pre-op waiting room, I don't know that I have ever seen more doctors and nurses in such a short amount of time. We might as well had one of those revolving doors you see at hotels or department stores. They finished prepping her just a bit after 9:00, and we only had 25 short minutes to get as many visitors back as we could. Right on schedule, they wheeled Mandy away on time, and I began my wait to be called back. Those of you that know us well, know Mandy had spinal fusion surgery two years ago, and there was some fear amongst the anesthesiologists that the spinal block might not take. If that would have happened, I wouldn't have been able to be with her in the OR.
I waited...
15 minutes (little anxious, and a little perspiration)
30 minutes (more anxious, and beginning to really glisten)
45 minutes (stressed out, and full fledged sweat)
Finally, I caught a glimpse of a nurse that I recognized, and she told me the block took effect
(after the fourth and final attempt), and they would come to get me shortly. As soon as I got into the OR, they had a chair set up for me behind Mandy and a big curtain. Within five minutes, Dr. Bennett (who is a fantastic Advanced Maternal Fetal Medicine OB) said that Madison was on her way out. Within moments, we heard Madison's first cry which immediately roused Mandy and cause our simultaneous cry. We heard oooh's and ahhhh's from everyone in the room about how great she looked, acted, and about how much hair she had on her head.
After they cleaned quite a bit of the goop off, they asked if I wanted to come over and see my daughter. I gave it a thought after deciding I had nothing better to do, so I moseyed over to take a peek. She was (and is) the most beautiful site these eyes have ever seen!!!! They asked if I wanted to see her lesion, and I did, but I was amazed at how small and resilient it appeared. I returned to Mandy's bedside to support and encourage her through the rest of the procedure. Just as I thought they were about the take Madison to the NICU, someone asked me if I would like to hold her. (My goodness, I am really tearing up right now) When I got her in my arms, I could have just gone on to be with the Lord. I was able to lean over so that mommy could give Madison some kisses on her head, and then they took her away to the NICU. I wouldn't have access to Madison in the NICU for some time, so I stayed with Mandy until they finished the procedure. She did so great, and I am so proud of her. I escorted her back the post op holding cell, took off my OR paraphernalia (that pick is worth a laugh), and began to go down Mandy's phone call and text message list. After about an hour in the post op room, we made the call to the NICU, and I found out she was stable and ready for me to come over.
I left mommy... When I got to the NICU, Madison was even more beautiful than when I saw her in the Operating Room. My poor, sweet little angel was hooked up to more devices than a computer. Shortly after I got there, they had to draw some blood (which required another stick), and her cries and tears absolutely broke my heart. So, I decided the only right thing to do was cry along with her. I don't know if this helped her, but it helped me a little bit. After drawing the blood, they nurse taught me how to hold her so I didn't bother her Spina Bifida lesion. I stared at her as though the world didn't exist! I was holding our daughter, God's Creation, in my arms, and it was the most humbling, rewarding, fulfilling, and incredible feeling in the world. Madison's surgeon (Dr. Noel Tulipan), stopped by when I was holding her to check her lesion. After we rearranged her, he took one look at it and said matter of factly "Oh, that doesn't look so bad. I'll be able to take care of that no problem!!!!" How cool must it be to be one of the leading pediatric neurosurgeons in the world and look at a Spina Bifida lesion and say "I'll fix that no problem and make my tee time by noon???" (He didn't say exactly that, but come on you get the point...) He encouraged me so much, because he felt Madison has an excellent chance to show very mild symptoms or even be symptom free. He even mentioned that if her ventricles looked as good as they have been looking, we may leave Vanderbilt days early because there will be no need for shunts! Tell me that is not an answer to prayer.
I finally agreed to leave Madison for a little while and go eat. While I was eating, Mandy was able to make her way to the NICU and really see and hold Madison for the first time. Mom's experience was much like mine, and she sure didn't want to put that baby down and return to the room.
Finishing up, Vanderbilt Medical Center lived up to it's reputation today. I have never experienced more professional and patient centered medical personnel in my life. I am so thankful that God made it clear that VUMC was the choice for Madison, and I hope these doctor's and nurses get the credit and praise they deserve!!!
Last addition, and I promise you won't have to read anymore. Something was brought to my attention that I just had to share, because I think it proves God's hands have been over and inside Madison throughout this journey. If you have been following along, you know that one of our biggest concerns through this process has been Madison's low weight seen through ultrasounds. We were excited to share that last week she scanned at 6lbs. 1oz. However, today she was born weighing 7lbs. 7oz., and I just want to remind you all that seven is a perfect number both mathematically and theologically. I believe in my heart of hearts, this was no coincidence, and that we all were reminded that there is a God, He loves us, and He is always in control.
God was honored today, and we couldn't have asked for anything more! I love you all, and we'll post again soon.
(hopefully for your sakes, it will be Mandy posting)
D
Today is Madison's Birthday!
"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24
Thursday, June 3, 2010
It's Official...June 8th will be Madison's Birthday!
So, if you've been reading this blog on a semi-regular basis you might have read that there was a possibility that Madison's birthday was going to be moved up if any significant or concerning changes were observed in her development. Well, we had a great report from drs. yesterday at our last Vanderbilt appointment and Madison is doing great! No need to move up her delivery unless Mandy goes into labor. Our prayer has been that she would weigh at least 6 pounds by the time she's born and yesterday she weighed 6 lbs. 1 oz. She just had to gain that extra ounce to show us she's a fighter! It would be awesome if she could get to 6 1/2 pounds by the 8th! Dr. said that her ventricle dilation has remained the same, which is great news, and that at this point they can't determine if she'll need to have drainage shunts put in. Please join us in prayer that once Madison has her surgery to close up her little spine, those ventricles will return to normal size and the drs will be astonished that she will not need the shunts. We serve a big God and we know it is within his power to heal Madison- we're not finished praying for a miracle of healing in her little body. Mandy received her pre-op instructions for the c-section and everything is set so now all we do is wait for the 8th. Hopefully we can both get some rest before the big day and prepare our hearts and minds for the birth of our daughter that is going to change our lives forever. We can hardly wait! Several people have asked us whether or not we can update our blog from the hospital and the answer is yes. So, check back after the 8th to get updates on Madison's delivery, her surgery, and how mom and dad are doing. We'll post pictures as we get them but she'll be in the NICU and we're not sure how many photo ops we'll get from there. Lastly, thank you so much for the continued prayers and encouragement we've received over these past several months leading up to Madison's arrival. Madison is a very loved little girl and through loving her, you've demonstrated love toward us. "I thank my God every time I remember you." Phil. 1:3
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