Madison's Birthday:

June 8, 2010

From the Word:

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

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

Wednesday, June 29, 2011

Her Health in Question- Now We Have an Answer

This post is meant to serve as an update on Madison from recent events at her 1 year check-up with her Pediatrician.

Madison's 1 year check-up was on Monday, 6/27 and I'll confess that I just knew in my heart I was gonna get bad news about Madison's weight at that visit. Call it my mother's intuition or my ESP, but I had a feeling her weight was not going to be satisfactory. For about a month now Madison's appetite has slowly diminished and she has been very cranky at meal time. I was not bothered by this at first because she had two teeth come in within a week of each other so I figured the slowdown in appetite was because of that. But lately she's grown increasingly finicky over food and really doesn't eat much at all. But she loves her sippy cup with some milk or juice in it. Back to the doctor's visit. To my shock and horror, when I put Madison on the scale on Monday she weighed only 20 pounds and 6 ounces- that was 3 ounces less than she weighed 3 MONTHS AGO at her 9 month check-up. She had not gained a SINGLE ounce in a 3 month time period and had lost a few ounces at that. The pediatrician's growth charts indicate Madison should weigh upwards of 25 pounds by this point and be closer to 31 inches long- she measured 29 inches. So, yet again Madison has a deficit: 5 pounds and 3 inches.

As I suspected, the pediatrician was a little freaked out by the lack of growth and blurted out words I was not expecting to hear about Madison. She said, "This is a case of failure to thrive in childhood." Now, I fully embrace that I tend to be over-reactive and admit that every little thing freaks me out about Madison's health but give me a break!!!! She just said my child wasn't thriving!!!! I temporarily froze in my chair when I heard those words. Because I am not a medical professional and really had no idea what that meant my mind began racing with horrible thoughts. It was not a pretty picture of what was gonna happen to my poor little girl if she didn't grow. But the doctor quickly moved on and I struggled to snap out of my panicked mental state to listen to the rest of her report. She suspected Madison might have another urinary tract infection which would result in a decreased appetite and before I knew it she was giving me instructions to report to the hospital for bloodwork. Before we could go, the doctor wanted me to cath Madison for a urine sample they could test in house. Insert funny story #1 here: as previously mentioned I had to put Madison on the scale to weigh her at the beginning of our visit. What I didn't mention was that when it was time to weigh Madison, she took THE world's largest pee-pee while I was trying to take her diaper off and get her naked self on the scale. Pee was everywhere followed by a poop. The nurse stood there for 5 minutes waiting on Madison to finish her business so we could weigh her- seemed like an eternity. Because Madison had so thoroughly emptied her bladder during the weigh-in incident, I retrieved virtually nothing for a urine sample when I cathed her.

At this point it is important for me to insert that Madison developed a horrible urinary tract infection in April this year after a battle with a very nasty gastrointestinal bug. She quit eating all together, ran a fever, turned white as a ghost, had constant vomiting and diarhhea, and was lethargic for days. Scared us to death. As a result, we took a lovely trip (insert sarcastic tone here) to the ER for bloodwork and IV antibiotics. But the infection cleared and Madison became Madison again.

Back to the doctor's visit. After the doctor's check-up and diagnoses, the nurse returned with our hospital orders and the vile of urine for me to take to the hospital for testing. She said that because there was so little urine, they couldn't do a dip-stick test in-house and that the hospital would have to do lab work on it.

On my quick drive to the hospital I called Da-Da to inform him of our trip to CRMC and of course, began having flashbacks to our visit in April and how sick Madison got from that UTI. We arrived and went to the lab with our orders and they began working on Madison. I was asked for the urine sample and now I insert funny story #2: upon handing over the bag with Madison's urine sample the lab tech exclaimed, "There's nothing in here!" To which I thought, of course there is, they gave it to me at the pediatrician's office and put it in this special bag for me to carry over here- why would they send it with me if there wasn't anything in there? But she kept on commenting on the empty nature of the vile. So, I go look at it while she's holding it and sure enough- there's no urine sample in there. I immediately started feeling through Madison's diaper bag to see if the sample had spilled inside or if there was a hole in the transport bag that allowed it to leak out. But alas, there was no explanation for the non-existence of the pee pee. I'm sure to the lab techs it seemed odd because I was perplexed myself and began trying to offer explanations for why there was no sample. The more I tried to explain to the lab techs the more curious they got. I thought to myself- do they think I stole my daughter's pee? What would I have done with it? Do they think I dumped it out? Do they think I would knowingly bring an empty vile here for testing? I don't know what they were thinking but I knew the pee pee was gone and there was none for testing. What a mystery.

Anyways, Dustin and I suggested we cath her again to see if we could get another sample if they could provide us with a cath kit. Thankfully, I had filled up Madison's sippy with juice before we left that morning and had been giving her some throughout the morning to combat her boredom and fussiness during the doctor's visit and immunizations. That was the smartest thing I did all day because Madison was full to the brim and her second cath of the day was much more successful in producing a sample, so much so we almost had another incident like the one I mentioned earlier. After the cath and drawing Madison's blood we were dismissed and sent home to wait for two days on results.

That brings us to today, 6/29. The pediatrician's office called me this morning and reported that all bloodwork was normal (praise the Lord!) but that Madison does indeed have another urinary tract infection. Which is shocking to me because for the past two months since her last one, Madison has been the happiest, funniest, most care-free baby ever, a stark contrast to her behavior when she got her first UTI in April. She's had NO signs of illness: no fever, no vomitting/diarhhea, no lethargy, no paleness- none of the symptom that accompanied the UTI before. The decrease in appetite is the only thing we've noticed. But her doctor believes the previous UTI may not have totally cleared and has been continually aggravating Madison's little body to the point it has suppressed her appetite, thus resulting in the lack of weight gain. And let me go back to that "failure to thrive" dianosis for a minute. If you've never heard of it, like I hadn't, it's a term given to children who cease to gain weight or grow in length for a period of 3 consecutive months or drop 2-3% below the healthy growth curve, both of which Madison has done. It can be serious if left untreated, affecting physical, cognitive, and social development but the doctor believes this persistent UTI is the only thing affecting Madison and that once finally treated, she'll be able to pack on the pounds and leave that awful diagnosis behind.

Within an hour of receiving word from the pediatrician about test results, Madison's urologist from Vanderbilt called me at home. They had already received word of the urine culture/results and were calling to check on her (gosh, I love that place) and say they would do some follow-up testing when we go to Spina Bifida clinic in July.

So, what have I learned from this latest scare with Madison:
1. Pee happens. Just be prepared with lots of wet wipes and disposable pads.
2. Juice in the sippy can be a life-saver- I'll never leave home without some from now on.
3. It's never gonna get easier to see my precious girl get poked and prodded by medical professionals. I wanted to tear her away from them while they were drawing her blood. She cried as if they were literaly drawing the life out of her.
4. Pharmaceutical companies are making serious bank off the Rawls family. Madison's got a new antibotic for the UTI and I'm sure she'll get a new prescription regimen from her urologist when we visit Vanderbilt next month.
5. Don't jump to conclusions about medical diagnoses when you hear them. Let the doctor explain them in detail, ask questions if you don't understand, and stay off the internet unless reading from a medical facility's site such as Vanderbilt, John Hopkins, etc.
6. UTIs are probably going to plague Madison for the rest of her life due to the Spina Bifida and its affect on her bladder, kidneys, and bowels. We likely will make many more trips to the hospital for instances like this. Therefore, please continue to pray for her daily healing and growth.

We are hopeful this infection will be cleared quickly and Madison can begin to put on weight and grow like she's supposed to. We have a couple of follow-up appointments scheduled over the next month so I'll be sure to update the blog with her progress in this situation.

As always, thank you for the prayers you say for our family and our sweet Madison. We are continually encouraged by them and praise the Lord for you for offering them- Phil. 1:3.



Wednesday, June 8, 2011

She's One

Well, today is the day. Madison Grace is one year old today. And to say that time has flown by this past year would be a huge understatement. As a fair warning to you the reader, I must declare my intent to vent in today’s entry. I have many thoughts, reflections, feelings, and emotions surrounding this day and the past year. Some things I say may shock you, break your heart, or make you smile. I don’t know how you will respond to my entry but I must express all these emotions I have. As with other posts of mine, it’s lengthy. Get settled. Here goes…

It is so cliché to say that it seems just like yesterday we were driving to the hospital to have Madison but that’s exactly what it seems like. In looking back on June 8, 2010, I remember such an overwhelming sense of excitement as we anticipated Madison’s arrival. Somehow I managed to push all my worries and anxiety over Madison’s Spina Bifida to the back of my mind that day. I was just too excited to be giving birth and meeting for the first time the person who was going to change my life. The countless doctors’ appointments, diagnostic tests, ultrasounds, and discussions we had endured in the nearly 7 months prior to Madison’s birth had escaped my mind that day, at least for a little while. Amazing how something we had been so fixated on and had so much anxiety over could disappear so quickly. But I woke up that morning and prepared myself to welcome our first child into the world just like any parent would, with no regard for what would happen after Madison arrived. In retrospect, I consider that a gift from God that He would allow me to experience Madison’s birth the way I did and clear my mind long enough for me to enjoy that time and have such joy and peace in my heart.

In the past twelve months since Madison’s birth, I certainly have never lost my joy over Madison or what a gift she is, but I am human and I have struggled, wrestled, and fought to overcome the intense waves of emotion I have experienced as a mother of a child with special needs. Most of my days as Madison’s mommy are great days- days when I enjoy every minute with her, go through our daily routines, and say my prayer of thanksgiving for her each night as we lay her down to sleep. Those are great days. But there are days, dark days, when I feel defeated and frustrated that we are living this life with a child the world will always label as different, disabled, special. I am ashamed to admit these days still creep up on me but I am just being honest. I will forever in my heart grieve over the challenges she will face and hardships she will have to endure. Unless you are a parent of a child with any kind of exceptional need, you will never know what it is like to spend countless hours trying to teach your child to do the simplest of tasks that everyone else’s children can do without any effort. Nor will you feel the anguish I have felt when I watch opportunities and experiences pass my child by because she cannot participate. Madison has the most beautiful smile and sweetest spirit that some will never take the time to see because they won’t see past her disability. Already in her first year, I am physically and emotionally exhausted from all the doctors’ visits, therapy sessions, and workouts I’ve had to take Madison to and put her through. I just wanted to have a child, be a mommy and that be that. But instead I’ve watched my baby endure two huge surgeries, hospitalizations, struggle to achieve the most basic of physical functions, and miss most of her developmental milestones. Madison still cannot sit without assistance nor can she crawl, pull up, or stand. What is probably more frustrating about this is that I simply have to accept it as part of her disability when I know that if it weren’t for her Spina Bifida she could do all of these things and more. It’s enough to drive me crazy if I let it. Ultimately, one of the biggest things I’m struggling with today, on Madison’s 1st birthday, is that the challenges have not diminished- they’ve just changed. I couldn’t help but notice that at 10:22 a.m. on June 8th last year, Madison was entering the world and a year later on June 8th at 10:22 a.m. she was at physical therapy strapped into a contraption designed to help her stand. I so desperately desire for Madison to make improvements and just once for her to be right on track, not behind. Just once to be challenge-free, just for a while to not have special needs. This is of course, selfish talk, but I can’t help it. Over a year after her diagnosis I’m still trying to cope with it all. Sometimes I just cry out, “Lord, why won’t you give my baby the strength to stand?!?!? Why must she be behind?!?!?” After all of these thoughts I instantly feel ashamed for complaining and guilty for not treasuring all the wonderful qualities Madison does possess. I also am immediately reminded of the verse from Jeremiah 29:11 that I know well, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” God has a perfect plan for why I have endured and will continue to experience all these emotions surrounding Madison’s special needs but this verse also appeals to my motherhood. This verse also tells me that my child is so important to her Creator that He has already made plans for her special life, and that she has a future full of hope in those plans. That is so comforting to me and helps me reign in my emotions when I am tempted to wallow in the pit of despair I often create for myself.

Though I struggle to live out these plans God has set before me and my daughter, there is one thing I will never doubt nor ever forget about Madison Grace- she is a miracle. Someone once heard me refer to Madison as a miracle baby and asked me why she was. See if this qualifies as miraculous to you. Spina Bifida lesions that develop on the spine typically affect the area at the lesion and below it, usually resulting in paralysis from there down. Madison’s lesion was at the L5/S1 area of her spine, the lowest part. We were told to expect no leg movement, coordination, or feeling in Madison’s legs. Minutes after she was born and was being wheeled to the NICU, Madison’s isolette made a stop in the waiting room for family and friends to see her for the first time. They cried as they saw the blanket move when Madison kicked her little legs for the first time as if she was demonstrating that she was ok- she had overcome the doctors’ prognosis- she was not paralyzed. She also has been given a clean bill of health from her urologist who said she has the kidneys and bladder of a normal baby, unlike many children with Spina Bifida who have issues well into adulthood. For now, Madison requires no catheterization and appears to have no incontinence issues. At therapy three weeks ago, Madison pushed herself up onto her knees from a seated position, a skill which her therapist said means she has high level muscle function that is not typical of a child with Spina Bifida. All of those things combined with the fact that Madison is a sharp, extremely social, doesn’t miss a thing kind of girl demonstrates to me that God performed a miracle in Madison. She shouldn’t be able to move like she does. She’s not supposed to be off a cath schedule. She’s not supposed to be communicating and playing like she does. Spina Bifida should have created physical and cognitive challenges that Madison could not overcome. But she has. This picture below is one of my favorites we have ever taken of Madison.
It paraphrases Psalm 77:14- which is in small print under the text-which says, “You are the God who works wonders; You have made known Your strength among the peoples.” Is Madison not the epitome of this verse?!?!? Dustin and I, nor the many doctors, therapists, or special equipment are responsible for Madison’s miraculous outcomes. “Praise be to the LORD God, the God of Israel, who alone does marvelous deeds” Psalm 72:18. So, even though I struggle as I described earlier, I never forget that Madison has made tremendous progress and that God is still working on her.

Having said all of that, I must move on to what you were probably expecting to read in this birthday post- the good, fun, happy things. Side note- I am going to post her 1st birthday party pics separately from this entry. Some of you that read this blog have never met Madison and may never meet her. The rest of you know Madison but don’t get to interact with her like Mommy and Daddy do and therefore do not fully know the extent of her preciousness. The first year of Madison’s life has been nothing short of life-changing for us. We fell in love with her instantly upon meeting her and that love grows stronger every day. Her smiles at first were involuntary. Now, she beams at the sight of Mommy and Daddy and I swear there is no greater feeling than knowing I make my daughter happy. She reaches out for me and is calmed by my singing, my touch, and my embrace. She loves it when I flip my head up while drying my hair upside down so much that she squeals with delight. Madison, unfortunately, loves it when anyone drops anything or gets hurt. She laughs at the mention of the words “uh-oh” and she chuckles when she burps or toots (which she gets from her Daddy for sure!). Madison loves music and loves to be sung to which I am most happy to do for her. I’ve watched her develop quite the little personality over the past year which is partly mischievous, perfectly adorable, and particularly funny. She loves to be the center of attention, she NEVER misses a thing, and she is always on her best behavior, no kidding. The title of world’s best snuggler no longer belongs to Dustin as Madison has taken over in that area. She yanks her bows out of her hair now and her feet touch the back seat when she rides in the car- both signs that my baby is turning into a big girl. The things I love most about Madison being 1 are:
1. She can hold her own sippy cup and feed herself with it.
2. Laughter is contagious for Madison- she laughs in response to our laughter.
3. She understands the tone of my voice, whether it be stern or playful.
4. I no longer have to take her car seat into restaurants. She’s a big girl who can sit in her hook-on high chair.
5. She finds enjoyment in toys and books and it’s precious to watch.
6. Table food and whole milk have replaced homemade baby food and horribly expensive formula. AND
7. Madison loves to gab and makes all kinds of noises. I love a girl who loves to be social!
The things I love about Madison that have not changed over her first year are:
1. She wakes up happy every morning.
2. Tummy time is still Madison’s #1 enemy. It’s almost funny to watch her face turn angry when she realizes she’s being put on her tummy time mat.
3. Madison is all about routine- whether it be feeding, bathing, bedtime, etc. She has a schedule and she sticks to it like no other. She is definitely my child.
4. She still has lots of hair. Except now it’s getting curly in the back and on the sides. Dustin gets credit for the curls.
5. My heart flutters every time she smiles.

Madison has given me joy that I did not know existed until she came into my life. I don’t know how I lived without her all the years before she was born. Daily she teaches me great lessons in patience and love. In my first year as Madison’s mommy I have learned that God is in control, not me; my circumstances are of God’s design (Ephesians 1:11-12). All of these trials associated with Madison and her seemingly imperfect body serve a purpose. I have learned that being Madison’s mommy is the greatest job and most awesome task God has ever set before me- it is what I was born to do. I simply cannot imagine what God has in store for Madison as she embarks on her second year. I pray it brings strength, and growth, and breakthroughs for her. I pray God continues to break down my stubbornness and desire to control the circumstances that are truly beyond my control. Most of all I pray that her life bring glory to the One who created her. I can’t wait to see how the Lord will continue to grow Madison into the most amazing little girl He has planned for her to be. I’m just so blessed to be a part of her life and His plan for her.

I’ll end with some credits, so-to-speak, people and things Dustin and I are most thankful for over this past year of Madison’s life. These were part of the video tribute Dustin and I made for Madison recapping her first year.

Special Thanks To:
-Dr. Paige Gernt
-Vanderbilt University Medical Center
-Junior League Center for Advanced Maternal Fetal Medicine
-modern medical technology
-Dr. Bennett
-Dr. Tulipan
-health insurance (although we still owe a ton)
-Goodyear tires and Stella (our Toyota Camry)- for safely getting us to and from Nashville for our many trips to Vanderbilt
-the manufacturers of headbands and hair bows
-our trusty food processor- for holding up through all the baby food-making
-the people who read and/or stalked our blog
-the many people who prayed for our family
-our church family and our CIC lifegroup family of Stevens Street Baptist Church
-our family and friends
-our parents who always loved, encouraged, and supported us whenever we needed it over the past year and a half
-God- His grace and mercy never ceases to amaze us- Madison is a good and perfect gift from Him- Thank you, Lord for Madison Grace

Til next time,

~Mandy, Mommy of a 1-year old