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

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

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

Madison is Hanging in There!

Our latest news on Madison's progress comes after a busy week of drs. appointments for Mandy and Madison. Monday was Mandy's first appointment of the week at Vanderbilt for an MRI. Dr. Bennett was hoping the MRI would show her more detail about the cyst that has developed on Madison's brain and whether it is putting any unnecessary pressure on her already swollen brain (swollen from fluid). Wednesday we journeyed back to Vandy to get the results and an ultrasound. Ultrasounds, as frequently as they have occurred during this pregnancy, are like little gifts each time we go. We've had a chance to observe our Father's amazing creation and watch Madison grow and change in a way that most parents don't get the opportunity to do. Madison waved and stuck out her tongue in Wednesday's ultrasound and we were overjoyed to catch them on the screen. Drs. were not able to gain any further insight about Madison's cyst as the MRI results were inconclusive. Praise God that it apparently isn't big enough to raise any serious flags at this point. Her ventricle dilation stayed exactly the same as it was two weeks ago which is another praise! All in all the dr. didn't believe Madison was in any compromising condition that would require her to be delivered early like we thought at first. So, as for now, June 8th is still supposed to be Madison's birthday. At today's non-stress test, part of Mandy's twice-a-week testing she undergoes, Madison got the hiccups. The nurses could hear them from the hallway while Mandy was on the monitor and got tickled at how bad Madison had them. Mandy's belly was bouncing up and down in perfect time for over five minutes. Poor little girl. All in all, we feel like this week's reports gave us some hope that Madison is hanging in there, just waiting for the time to make her entrance into the world and for God to be glorified in her birth.

Belly Pictures!

Mandy's mom and dad came up to visit for Mother's Day weekend and we had a photo shoot with her dad. He took over 100 belly pictures...these are just a few of the many great pictures he made of the Madison belly.

Not-So-Great News from Vandy

Today was a busy day at Vandy for Mandy and Madison. The morning started out with an hour long echo cardiogram on Madison's heart. The dr. was looking for any abnormalities or defects in her heart that commonly occur when babies have such defects as spina bifida. Madison's heart appears to be in good health for now but she will have another echo done after she's born. After that appointment it was time to meet with our regular dr. for an ultrasound. While Madison had gained some weight, it's still not enough for the dr. to feel sure that there is not some chromosomal abnormality we're not aware of. But she had gained over a pound since our last visit so we're praising the Lord for that. A new development was the enlarged cyst the dr. spotted in the middle of Madison's brain. The dr. says they don't know what has caused it or what effect it may be having on her brain so Mandy goes back in two weeks for an MRI. We also learned Madison's brain ventricles are dilated significantly more than before- this means she's developing hydrocephalus and will most likely have to have a second surgery to put in shunts to drain the fluid after she's born. The combination of all these things is leading the dr. to believe that Madison will need to be delivered earlier than planned. It's likely that she'll be born in 3 weeks. We'll know for sure after our dr. has a chance to confer with the neurologist that will perform Madison's surgeries. Today's news is not what we were prepared to hear because we've been feeling like things were going so well with Madison lately. But God is still in control of her every heartbeat and movement and we know He is not finished with her yet. There is some purpose to these challenges we are facing with Madison and while we can't begin to understand why, we trust God is going to reveal Himself in an awesome way with her. But we are human and our hearts still grieve for our little girl who is having such a hard time. Our hearts have cried out to the Lord several times today over all of this and we just continue to ask that you not only pray for Madison but for us as well. We're trying to "keep the faith" as they say, but we have to say it's so difficult to do that. We are completely helpless in this situation and it is a very humbling position to be in. Just pray that we will allow God to be our strength in our weakness. His ways are not our ways and His thoughts are not our thoughts. So, we have to trust those ways and His plan for our family. "The LORD is righteous in all his ways and loving toward all he has made (this includes Madison)." Psalm 145:17. We did get a look at part of Madison's face in 3-D today and she is beautiful. Seeing her face is what we're going to consider as Mandy's Mother's Day present from Vanderbilt. The two pics that we got of her are of her profile because she wasn't in the right spot to get a front view. The right side of her face was mashed up against my belly so you see a big blob there.