The Story of Tait - Part 3

First, if you haven't read Part 1 or Part 2, go here and here.

Now you're caught up.

I have been trying to write part 3 for a while now. But I have some pretty strong emotions tied to it that have caused me to be a blubbering mess while writing it. This part has been hard. Because not only did we learn some pretty scary stuff about Tait, but I also saw God move in a way that I have never seen Him move before. I literally watched as prayers were answered in front of my eyes. And THAT, girlfriend, left me slack-jawed.

So here we go.

Every mom knows every square inch of their baby's body. They know about the freckle between their toes or the birthmark behind their ear. They know how to make a cowlick lay down and can tell you birth dates, birth weights, and shoe size of every one of their children. Because of Tait's ultrasounds, I can now recognize her INSIDES. :) I can now watch as the ultrasound tech rubs the wand across her belly and back and know exactly what I'm looking at. I will also be able to know when something's wrong. Just like I did the first time they zeroed in on her right kidney.

Meanwhile, Spencer and I were at the HEIGHT of conflict about where to move when we came back to Alabama. There were a LOT of tears. There were a LOT of harsh words spoken. There were a LOT of prayers. I was questioning everything - my marriage, my faith, my ability to mother this child who was sick, my ability to mother my other child who wasn't sick... It was a rough time. If we were going to move back to Alabama, I wanted to move to Birmingham. It's a great city with amazing little suburbs that have fantastic schools, etc. It seemed like the place where our family could settle for a long time. Spencer, on the other hand, wanted to move NOWHERE but Montgomery, where our families lived (and still do). We both call Montgomery home - we were raised there. But I knew that going back to a place where you have previously been is hard - if not impossible. Plus, the opportunities for our family were better in Birmingham. But he would have NO PART of it. He had interviewed for jobs in Montgomery - doors kept closing. I was noticing that more and more signs pointed to Birmingham, but I couldn't make him see that. I knew that the only way we were moving here was for God to change his mind.

Tait was 9 months old when a cyst developed in her right kidney. It was scrutinized and measured and noted and observed and we were told not to worry. YEAH RIGHT. 2 months later, she had 2 cysts in her right kidney and 1 in her left. An appointment was made with a pediatric nephrologist at Children's Hospital immediately. We drove to Birmingham (we were living in Tallahassee, remember?) for our appointment. We met this man who told us that Tait had poly cystic kidney disease (PKD) and would be facing a kidney transplant by her 14th birthday. He told us that she wouldn't be able to have children because of the stress on her kidneys. He laid out a plan for her life that included blood pressure medicine, no contact or rough sports (and if you know my family, we are ATHLETES), and very structured weight control. My mind was spinning as I listened to this very smart doctor tell me what a challenge her life would be. I stood in this room, holding my 11 month old, with tears pouring down my face.

Then he picked up her chart and said, "Hold on. The cysts could actually be a by-product of her BWS, but I don't have any experience in that area." Then he said words that I will never forget as long as I live. He said, "There are 4 doctors IN THE WORLD who are leading specialists in pediatric kidney disorders AND genetic disorders and how the two are related." Then he pointed to a door and said, "We have one of them here on staff and her office is right there. Would you like me to make you an appointment with her?" You could've knocked Spencer and me over with a feather. Spencer turned to me and said, "We're moving to Birmingham." My prayer was answered in the basement of Children's Hospital, on a day that was proving to be one of the worst ones of my life. Turns out, it was one of the best.

We made an appointment to meet with Dr. Lisa Guay-Woodford, a Harvard educated, multi-published, BRILLIANT doctor who is as sweet as she is smart. She loves on Tait and speaks waayy over our heads. Spencer and I get tickled every time we see her because when she walks out of the room, we try our best to translate into "normal people words" what she has just said to us. The first time she met us, she told us that she did NOT think Tait had PKD. She thinks that the cysts are part of BWS. She thinks that more kids than we realize probably have renal cysts, but most kids don't have abdominal ultrasounds to check. She thinks she will never have any trouble with them. She wants us to keep them monitored, which we do at her quarterly ultrasounds. She breathed life back into our daughter and told us that she was normal, healthy, and should be able to have 6 kids if she wanted. She eased our minds and calmed our hearts.

We now see Dr. Descartes every year. She is in charge of all of the other doctors. She schedules everything and any new doc is run through her first. It's nice to know that one, of our many docs, is the one in charge. There's no conflict with power. We see Dr. Guay-Woodford twice a year to check and monitor Tait's kidney function (which has been totally normal). We see an allergy/asthma specialist - Tait has seasonal allergies, as well as allergies to cats and dogs, just like every kid on the planet. But because of her large tongue, thus causing a smaller airway than most kids, when she gets any upper respiratory sickness, she is SICK - like hospital sick. It can and does cause airway/breathing issues. We never travel without a stash of allergy meds and a nebulizer for wheezing. But we have a doc monitoring that closely. Tait goes to kindergarten like all other 5 year olds. She is smart, developmentally ahead of her classmates, has a precious shy smile, and has a laugh that will melt your heart. She is expected to grow old, be a grandmother, and live a completely normal life. She is still monitored every 3 months via ultrasound for any developing tumors, but other than that is completely normal.

We moved 3 months later to Birmingham. Spencer looked at the job postings within his company the night we got home from the doctor and found a brand new opening in Birmingham. Very funny, God. :) He interviewed and got it. It was a little bit of a promotion and a little bit of a raise. We bought a house that had been on the market for 6 days. We have amazing friends, an AWESOME church, a wonderful community, and the best doctors in the world for our girl.

There are days when I get a little freaked out at the constant cancer monitoring that she goes through. It's not easy. It can take a toll on a mom's psyche. But God did not give me a spirit of fear. And I have to claim the promise that NO MATTER WHAT the tests show, My God Will Take Care Of Me. He has proven Himself faithful during the first 5 years of her life. And He will continue to be that way. He is the only one who loves her more than Spencer and I do. And My God Will Take Care Of Her.



Praise His Name. To HIM be the glory.

What I Made For Dinner Tonight

I was reading Clean Eating magazine the other day (you know, the whole change of lifestyle, getting fit, working with a trainer, taking Advocare products (by the way, if you're at all interested in that, let me know...I can help you out...see side bar to the RIGHT for an Advocare link if you're interested...), losing weight thing) and came across this recipe for Jambalaya. I showed it to Spencer who immediately said, "I think that should go on the menu soon...like tonight." So I made it tonight. It was FAB - quite possibly my favorite meal lately. Well, except for some Sea Bass that Spencer cooked on a cedar plank on The Big Green Egg - seriously, it would make you cry. But it's a close 2nd place. And since a blog is really just the 21st century version of writing letters and sharing recipe cards, I decided to share it here with you. Or, if you'd like, you can pick up the July/Aug 2010 issue of Clean Eating, which I highly recommend, because there were several more yummy looking things in there that I haven't tried yet. But will.

This jambalaya is made in a foil pouch, which makes clean-up a BREEZE. Just FYI.

Ingredients:
- 1/2 lb raw shrimp (26/30 size), peeled & deveined, tail on (I used a little more than 1/2 lb.)
- 4 oz boneless, skinless chicken breast, diced into 1 inch pieces (I used 1 regular sized chicken breast - didn't weigh it)
- 1 all natural low sodium turkey sausage, sliced
- 1/2 medium white onion (I used a Vidalia onion) diced.
- 1 medium green bell pepper, diced.
- 1 rib celery, diced (I left this out altogether since Spencer is convinced that celery was invented by Satan, himself)
- 1 1/2 medium tomatoes, diced
- 2 cloves garlic, minced
- 1 1/2 tsp salt free Cajun seasoning (I didn't have the salt-free kind, so I omitted the salt that comes later in the recipe)
- 1 C all natural instant brown rice (I used a little more)
- 1/2 C low-sodium chicken broth (I used a little more)
- Salt & fresh ground pepper to taste (I omitted the salt....I already told you that)
- Olive Oil cooking spray (I forgot to spray the foil pouches and it worked fine - oops)

Instructions:
- Preheat oven to 400*F.
- Mix all ingredients in a large bowl, except for the cooking spray. Duh.
- Prepare 2 foil pouches, spray each with cooking spray (unless you forget like I did), put half of the ingredients in each, and seal.
- Cook 25 min. Check after 25 min to make sure chicken, shrimp, & rice are all done. If necessary, re-seal and cook for another 5 min.

Nutrients per 1 1/2 C serving: (for those of you who keep with this sort of stuff...like me)
- Calories: 339
- Total Fat: 5g
- Sat fat: 1g
- Carbs: 24g
- Fiber: 3g
- Sugars: 3g
- Protien: 46g
- Sodium: 354mg
- Cholesterol: 171mg

Finished product....

The Story of Tait (part 2)

If you missed Part 1, go here.

Welcome back. ;)

When we left off, my sweet baby girl had come home from the NICU and was having some symptoms of something else being wrong - though none of us, including our pediatrician, could put our fingers on it. The 1st symptom was her size. She was born 5 weeks early, but weighed 7lbs 5oz. She was a giant compared to the other babies in the NICU. But her size didn't really raise a red flag. The symptom that really puzzled us was the size of her tongue. It was so big that she couldn't keep it in her mouth. It stuck out 100% of the time. She had a very difficult time eating because of it and we tried every single bottle nipple on the market before we found one that she could use. Her large tongue also meant that her airway was smaller, so she got sick easier. A common cold would land her in the PICU because it would turn into croup and other breathing problems. My father-in-law did a little research and found out that a large tongue could be because of a thyroid problem, so we had her thyroid checked. It was normal. Our pediatrician, Dr. Jim Ed Martin - seriously, who COULDN'T love someone named Jim Ed? - who was the pediatrician on call the weekend Tait was born and was a total and complete answer to prayer, didn't give up. He knew something was "off" and vowed to research and test until he figured it out.

Then one night, as I was up during the middle of the night feeding a newborn, I decided to do a little "home doctor research" - ie, Google research - on the computer. I Googled "infant large tongue" and the link to the Beckwith-Wiedemann Children's Foundation popped up. I clicked over and it was like I was reading Tait's biography. I, of course, freaked because I didn't know what this was, what the prognosis was, or what our lives were about to look like, but I knew without a shadow of a doubt that Tait had it.

In the middle of all of this happening, Spencer and I were really feeling the urge to move back to Alabama. We were living in Tallahassee, and loving it, but knew it wasn't home. However, WHERE in Alabama we would move to was a huge bone of contention between the two of us. We wanted 2 different things, and neither of us would budge on the issue. It was the first, and to date the only time that we haven't been able to come to a compromise on an issue that we were facing. We talked with our pastor about our conflict and he gave us some great advice that I will never forget. He told Spencer to use spiritual discernment when making the decision as to where we would move, not just decide based on what he wanted. He told me to shut up and hit my knees (not in so many words, but that's what I heard). Spencer was, and is, the head of the household. He is the leader, backbone, and breadwinner in this family. I knew that ultimately the decision was his, and that my job was to pray that he made a decision based on where God was leading us. It was a rocky time. I spent a lot of time in prayer. I begged God to send us to a city where there were more opportunities to grow and raise a family than where Spencer wanted to go.

Meanwhile, Dr. Jim Ed wanted us to go see a genetecist in Gainesville. Because Alabama is home, we chose to go to Birmingham, Children's Hospital, to see a genetecist there, instead of Gainsville, which has an amazing Children's hospital, but is completely foreign to us - with both of us being from Montgomery, Birmingham was much more familiar than Gainesville. Children's Hospital has an unbelievable reputation and we knew we would get world class care there. So we scheduled a trip to Birmingham to meet Dr. Maria Descartes, a spunky, brilliant, Hispanic doctor, who has become one of our favorite people in the world. Tait was 12 weeks old at the time. We were still living in Florida and still undecided as to where we were going to move. Spencer applied and interviewed for a couple of jobs in Alabama, and doors kept closing. Frustration was setting in. We had a 4-year-old, and a 3 month old who had a syndrome that no one had ever heard of, and scared the pants off of all of us. We were living 5 hours away from our families, and now we had a doctor that we loved in Birmingham - 6 1/2 hours away. I wanted to move to Birmingham. Spencer, to put it mildly, did NOT. To say times were tense is an understatement of epic proportions.

The test for BWS is very primitive, so Tait was clinically diagnosed with it. BWS is characterized as an "overgrowth syndrome." The main "issue" associated with BWS is that children with it have an increased risk of developing certain abdominal cancers within the 1st 8-9 years of life. BWS kids are tested every 6 weeks (until age 4) for hepatoblastoma (a tumor in the liver), and every 3 months (until age 8) for Wilms Tumor (kidney) and Neuroblastoma (affects the nerves, but mostly begins as a tumor on or near the adrenal gland). So Dr. Maria set up a schedule of tests for Tait, beginning immediately. The liver test requires a vial of blood to be drawn and the Wilms/Neuroblastoma test requires an abdominal ultrasound. Tests began and we had our new normal. BWS isn't usually fatal (praise HIM!) and Tait seemed to have a very mild case (many kids with BWS suffer from major eating problems because of their tongue size, and have to be tube fed until a tongue reduction is performed. They also have hemihypertrophy, which means that one side of the body grows at a different rate than the other side. Tait had none of those issues). We were rolling along quite well until one ultrasound threw a kink into our plans and completely knocked our feet out from under us.

To be continued....

The story of Tait. (part 1)

Last week, my middle baby turned 5. Because her birthday is on July 2, it gets smooshed into the festivities of the 4th of July holiday. However, it also lends itself to a lot of playing outside, swimming, and fireworks. What kid doesn't like that? But as we celebrate Tait's birthday, I also reflect back on my pregnancy with her, her birth, and infancy. It was a beautiful time. It was a hard time. It was a scary time. And it was a time where I grew closer to my Savior than I ever thought possible.

This is the story of Tait.

When Mary Emma was 2, Spencer and I decided that it was time to try to get pregnant again. I am very fortunate in that I get pregnant EASILY. So when we decided that it was time, I was pregnant in no time flat. After a trip to NYC, a torn arch in my foot, a cast, a DVT (MAJOR blood clot), and a hospital stay, I lost that baby at about 9 weeks. I was heartbroken. But I was determined to have another baby. So about a year later, I got pregnant again. I lost that baby at about 11 weeks. The doctors started running tests on my blood and realized that I have a situation with my blood that causes it to thicken when my estrogen levels increase (ie. pregnancy), and I was most likely losing the babies because of mini blood clots that were trying to pass through the teeny umbilical cord. So the doctors had me begin taking Heparin shots to thin my blood and fix the problem. And I got pregnant again. And lost that baby, too.

DEVASTATED.

I was hesitant to get pregnant again. I was heartbroken. I was tired. I was having to give myself 2 shots a day in the stomach. I had a beautiful 3 year old daughter. I was trying to be content with 1 child. But I wanted another child. Desperately. So I turned it over to God and trusted that He would take care of me and the baby that I longed for.

And I got pregnant again. And this time, I didn't lose the baby. But I was disconnected. I was hesitant. I was terrified.

I refused to get close to this baby. Spencer and I wouldn't name her. We didn't decorate a nursery until the last possible minute. We went about life as usual. At 34 weeks I didn't feel her move for an entire day. I. Freaked. I called my doctor who sent me straight to the hospital. I was having contractions every 2 minutes. I spent a weekend in the hospital and went home 3 days later on bed rest. I needed to keep this baby in for at least 4 more weeks. But 6 days later, she was coming and there was no stopping her. Because I was 35 weeks, they wouldn't stop my labor anymore. 6 hours, 1 failed epidural (read: natural childbirth), an entire host of on-call doctors because of the holiday weekend, and 3 pushes later, a beautiful 7lb 5oz baby girl was born. We named her Virginia Tait. Virginia was after my mother and grandmother. Tait was a name I just liked. It's different. It's sweet. And it fits her to a T. I remember crying and begging her to breathe. I didn't get to hold her. She breathed ok for a minute, and then started struggling. She was whisked out of my room and to the nursery before I really knew what was happening. The hospital where she was born didn't have a NICU. It was at a hospital across town. She was taken by ambulance to that hospital. I stayed at the 1st hospital. It was a holiday weekend. I was in a new town and state. I had very few friends and all of them were out of town. I had a beautiful baby girl who I couldn't see or hold. It was a horrible day and one of the best days of my life all combined into one.

The next morning, I was released from the hospital and went directly to the other hospital to be with her. I sat and held her almost around the clock. I was so swollen from the massive amounts of IV fluids that I had received (my blood pressure kept crashing) that I didn't have any shoes that would fit on my feet. And as I sat in the NICU, I realized how disconnected I had kept myself from her. I didn't think she knew that I loved her. So I sat. And I held her or kept a hand on her (she was on a ventilator for 2 days). And I told her over and over and over again that I loved her. Because I did. I loved her more than I knew was possible. I loved her like I loved her big sister. But I sobbed because this beautiful baby, who was fighting for her life, didn't know that her mama loved her. And she deserved the world.

I felt like I had already failed her.

And I started praying. I have been a Christian since I was a small child. But I was going through one of those super stubborn times where I was too self sufficient to NEED anyone and was completely content to do it all on my own. I certainly didn't need a God to take over. Because there was a chance that He wouldn't do what I wanted. And I wasn't gonna have any of that. In other words, I was STUPID. But my desire for God to take care of this baby clearly was overriding my need to be in control and I hit my knees. And you know what? He was there. He is always there. He never left, even though I pushed and pushed Him away. He was faithful just as it says in Psalm 145:13 (NIV) "The Lord is faithful to all his promises and loving toward all he has made." Praise His Name.

So 6 days later, we were able to bring Tait home. Our sweet little family of 3 was now a busy, sleepless family of 4.

And then we started to realize that something else was wrong. Tait had some symptoms that were pointing to something being wrong, but no one knew what that was.

I started to think that we were going to lose yet another child. But this one had been born. She was alive. She had stolen our hearts. And again, we were scared to death.

To be continued.....

Ok, So I've Been Busy

Dear Bloggy Peeps,

I promise I haven't forgotten about you. I've just been busy. June is notorious for kicking my tail and it didn't disappoint this year, either.

We've been doing a WHOLE LOT of this:




And some of this:


And some of this:



And a lot of this:


And we got this precious ball of fluffiness - I'd like to introduce you to Piper, our 9 week old ShihTzu. She is EXACTLY like a toddler except she sleeps in the bathroom. She is into EVERYTHING!


Hope you're having a fantastic, restful, not-too-hot (HA!) summer. I'll be back soon. I promise.

Hugs,

Summertime in the South? I Got it Covered.

It's softball season. All-Star season to be exact. Which means I'm spending more time outside than inside. Unless you've never had the privilege of visiting the deep south, you understand that it's HOT outside. And humid. And did I mention hot?

Besides various forms of fans and cool clothing and tents to sit under and an insane amount of bottled water, I am always ALWAYS looking for a good sunscreen. Since my high school days of slathering myself in baby oil and laying out on aluminum foil have (thankfully) come to an end, I have turned into my grandmother and rarely leave the house without some sort of sunscreen on my face, at the very least. A couple of years ago, I accidentally discovered Neutrogena's line of sunscreen (and by accidentally, I mean that it was on sale, and since we go through sunscreen at a breakneck pace, I'm always looking for a sale) and fell in love with it. Mainly because it smells divine. And it WORKS. So when the lovely Neutrogena people asked me to review their new UltraSheer® Liquid Daily Sunblock, I happily agreed. It came in the mail last week, just in time for our 2nd tournament. So Saturday, as I was planning to spend a scorching day at the ballpark, I applied it under my makeup before I left the house. It's so light that you can't feel it at all. It has SPF 70 (SEVENTY! Take THAT, sun!). It, like their other products, smells great (unlike a certain me who sat in the 100 degree heat all day). It worked great. I re-applied it twice (I mean, hello, I sweated all my makeup off within the first 30 seconds of being outside) because I was constantly wiping my face. I wore another brand of sunscreen on my legs and arms - both of which got a little pink. But my face didn't get sunburned. It also didn't break out, which I was totally expecting to happen. Because every mid-30 aged woman loves to have the acne issues of a 14 year old boy, right? Um, no.

So, after one use, I'm a fan. We have another tournament this weekend AND next weekend (merciful heavens), and unless Alabama's climate suddenly turns to Montana's climate, it'll be hot and humid again. I'll be using Neutrogena UltraSheer® Liquid Daily Sunblock again. Because if it can survive an Alabama summer at the ballpark, I'll be a customer for a LOOOONNNG time.




Would you like to review UltraSheer®, too? Then go to http://www.giantwavepool.com/ultrasheer

Or get $2 off your UltraSheer® purchase at http://www.neutrogena.com/suncoupon.

Disclosure of Material Connection: I received the product mentioned above for free for review purposes from Tidal Labs. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising."

Pray for Ella

This is Ella. She is 2 years old. She is the daughter of Sheli, who was in my sorority pledge class at Auburn, and Robert. She is Cole's little sister.

And she has cancer.

Ella was diagnosed yesterday with Stage 3 Adrenal Carcinoma after a orange-sized tumor was taken out of her abdomen. Along with the tumor, one of her adrenal glands was also taken. Sheli and Robert will meet with the docs Thursday, which is also their 10th wedding anniversary, to discuss the next steps. Chemo will begin immediately.

I have watched the blog community rally around parents of sick kids. I have been in on the rally so many times. I have watched the power of prayer change lives. And now I'm begging you to do the same for Sheli, Robert, & Cole - and especially sweet little Ella. I can't imagine their heartbreak and outright fear right now. I do know a God who is bigger than their heartbreak. He is bigger than their fear. And He is bigger than this cancer. Sheli and Robert are clinging to their Savior right now. Please join them in praying for complete healing for this precious child.

Please, please, lift up this family. I will keep you updated.