Sunday, November 25, 2012

If I could tell me...

If I could go outside of myself, hug myself and tell myself one thing, it would be that's it's going to be okay. I've never met a mom of a child just like Case. I've never had anyone say that they know exactly what I'm going through or what my future holds but some nights I wish I did. Tonight, all of a sudden Case felt hot. I took his temp and it was 103. Because of his kidney problems, this could potentially be a big deal. I'm suppose to call his pediatrician anytime he has a temp over 102. So, of course I called right away and if Tylenol didn't work I was suppose to rush him to the ER. This started to get to me. I started to think that maybe I'm not cut out for this. At the drop of a hat our lives could change. There's no guarantee that anything will ever be normal or easy. If I could jump outside of myself on nights like this and give myself a hug the one thing I would say is that it's going to be okay. That I am strong enough for this. That comfortable is overrated and easy is a a thing of the past. I would tell myself that I'm made for this that I can do this and that just when I think I'm too weak a God given strength will shine threw. I would tell myself that every thing is going to be okay. "How do you know?" I would ask myself. "Because you can do ALL things threw Christ who strengthens you!" would be my answer...

Wednesday, November 21, 2012

About Case.

Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different.

It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different.
Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called and said he didn't have down syndrome or trisomy but that he was still a very sick BOY and they would run more tests.
We went to several appointments and two+ second level sonograms every month. Somewhere in the midst of the chaos, I would remind myself to take it moment by moment, day by day.
With every sonogram, the news got worse. The baby was way behind in growth. 11 weeks. The kidney was bad, the heart  was bad. There was one problem after another. On December 8th (about one month before my due date), we spent all day talking to specialists and doing sonograms at Magee Hospital in Pittsburgh (about one hour away from our home).
It was there that he said it. "Your child has too much wrong with it. It will probably die. It was just made wrong. It's computer programing is messed up." Those words cut like a knife. I will never forget that cold December day and our 8+ hours of gloom. On December 20th we had another second level sonogram in Johnstown. I didn't want to go. I was done, not with my baby but with the doom and gloom reports from the doctors. With "expecting the worse and hoping for the best". With the painful thoughts that our baby didn't have a fighting chance. We went. It turned to be a damn good thing we did. Our baby was dying inside of me. His chord blood and amniotic fluid were dangerously low. After what seemed like hours of non stress tests we were cleared to drive straight to Magee. I hugged the doctor from Johnstown and cried. Again. Once we arrived at Magee I had more sonograms, non stress tests and a horrible migraine. Towards the end of the non stress tests, his heart rate started dropping. It dropped to 24. An alarm sounded and I said goodbye to my boy. After all, he belonged to God and for some reason, it looked like God would keep him. I told him I loved him and it was okay to go but I'd really like to meet him. Doctors and nurses rushed in. Case stabilized. They admitted me to a room and did a c-secton in the morning.
We were so scared. They pulled him out and wouldn't let his daddy look at him. There were dozens of people crowded around him. You see, before birth they made him out to be a sort of freak. He was not. When they finally brought him to my face, he was BEAUTIFUL. 
All 2 pounds, 13 ounces of him. He was less than 4 weeks early but due to IUGR and an undiagnosed syndrome, he was so tiny. They life flighted him to Children's of Pittsburgh, only 7 minutes away. It took 3 days till we could hold him then it was only for 15 minutes a day.

After 38 days at Children's Case was 4 pounds 1 ounce and we went home.

Fast forward to now.
Case is 23 months old. He still has an undiagnosed syndrome. He is fed through a J feeding tube 22 hours a day. He is only 17 pounds (the size of a 6 month old). He has 22+ doctors, specialists, and therapists. He has Brain stem abnormalities, A Stenosis of the Foraman Magnum, low muscle tone in the right side of his face, a sub mucus cleft pallet, narrowing in the back of his throat, Swallowing isseues, problems with his left ear, slow motility, GERD, aspiration issues, A VSD, ASD, and PFO that are resolving themselves, other abnormalities of the heart, a tethered cord that was untethered, several other birth defects. a dysplastic, multi-cystic, left kidney, fluid in the right kidney, keratosis pilaris, Failure to thrive and probably something I am forgetting. He will have his 5th surgery on December 12th (just shortly before his 2nd birthday and more in the furture. He is behind in speech and a bit in hitting other milestones. He eats very, very little but is kept alive with his feeds. It seems every month or so, they find something new and add a new doctor. They have a great big, scary test out now to find a "main diagnosis", the Whole exome Sequencing test. It will take 4-6 months to get results. Results should be her in March.
After all of this. All of the tears, all of the prayers, all of the tests, trials and blessings it's more clear than EVER. CASE is CASE. Perfect. Made different for a VERY SPECIAL REASON. He has touched hundreds. maybe thousands of hearts and has made more friends in 23 months then most will in two lifetimes. You see, what the doctors didn't know is that his "computer programing" wasn't "messed up", it was different. And what they also didn't tell me is that DIFFERENT ISN'T DEFECTIVE, IT IS BEAUTIFUL. In all of this, God is sovereign and has given us EXACTLY what we have asked for, His beautiful will, no matter what it looks like and a gorgeous, important soul to watch grow and thrive..

Taken from Case's facebook page:
Case Daniel is four (he was born 12-21-10) with an "undiagnosed syndrome".
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day interveniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature. He's currently 25 pounds and 34 inches tall.
-He started growth hormone therapy in March, 20015. He gets daily shots indefinitely (assuming they work).
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth, intestinal failure and gastroparasis, he had his central line placed 1-20-15.
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

We were told before birth, he was not expected to live through birth and was born vi emergency C-section at almost 37 weeks only 2 pounds 13 ounces 13 inches due to sever IUGR and his may complications.....

Case has under gone an extensive genetics test called, the Whole Exome Sequencing Test which came back with no known syndrome. Currently, there is a very extensive test Called the Whole Gnome Sequencing test being done.... He has also undergone countless other blood tests and to this day remains undiagnosed...
He has spent countless days in-patient including 6 weeks in the NICU and goes to CHP between 1-4 times every month to see some of his 20+ drs., specialists or therapists or to have x-rays and other tests. His 13th surgery was in January with more to come. He's been seated 7 other times for extensive testing.

He also has Physical Therapy, Occupational Therapy and Speech Therapy several times a month while attending his IU preschool (when he is well and not in the hospital)

Tuesday, November 20, 2012

Home is Where the Heart is.

Since Case was born, almost 23 months ago, I gained a second home. Case spent 38 days after his birth at Children Hospital, Pittsburgh and several hundred hours after that. It takes between 2 and 3 hours (depending on traffic) to get there. We go between 2 and 4 times a month, usually. Between appointments, x-rays, blood works, surgeries, tests, tests and more tests we feel like we have two homes. Half of my heart is here in my physical home and the other half in the home that has saved and enhanced Case's life. Yesterday, for the third time in 3 weeks we went to our second home. It was only for a follow up with Neurosurgery but it was pretty early so we went last night and stayed at the Ronald McDonald house. I love that place too I would tell you how much, but that's a whole other blog. Anyway, we saw the PA and the surgeon who untethered Case's cord. His wound looks good. They still don't want him bathing (only sponge baths) for 4-8 weeks (when the stitches completely dissolve). Not an easy task when you have a bath-obsessed baby! Case has several issues that require a neurologist  to follow him (brain stem abnormalities, Stenosis of the Foraman Magnum, an unclosed fontanel, a rather quickly growing head, and low muscle tone on the right side of his face). A neurosurgeon only fixes the problems but a Neurologist follows, explains and tests the problems that exist. Therefore, we have added another specialist. Number 16. Number 20 if you include his pediatrician and therapists. Holy, frekin' cow! So, the moral of the story is that I LOVE my big, awesome, strong boy and my second home.

Saturday, November 17, 2012

Spreading smiles and giving hope this Christmas season!

Would you like to brighten the day of the patients at Children's in Pittsburgh this holiday season? Click this link to learn more.:) I've also added a "donate" button if you'd like to donate though Paypal.:) We will use the money to spread smiles to the CHP patients this season!:)

Case chillin' on his first Christmas at CHP.

Tuesday, November 13, 2012

What I would tell you...

To my two oldest daughters. Meredith Rae and Samantha Lynn. This is what I would tell you if I could text you after you got on the bus in the morning...I'm sorry you had to run to catch it. I'm sorry you almost miss it 3 out of 5 days a week. Thanks for being patient with me while I try to split my time and energy a million ways. I'm sorry I can't chaperone your field trips and volunteer at your schools much now that your brother doesn't have day nursing hours. Thanks for stepping up. For helping out. For being wise beyond your years. Thanks for understanding and loving our "dates" even if they are usually just to the grocery store. Thanks for not minding too much when your homework helper is distracted by a beeping pump, vomit and important phone calls. Thanks for growing in wisdom and understanding that different isn't defective, different is beautiful. I wish you could stay home from school and cuddle me all day like Lainey but I know that school is where you belong right now. I love you two. My bigs. My buddies. My sweet, grown up 7 and 8 year olds. You two are very special. Thanks for being great.
Samantha, 7 and Meredith, 8
Sam and mom on a "date".
Meredith and tiny Case.
Samantha and tiny Case.
Momma and "momma" Meredith.

Saturday, November 10, 2012

Today I am thankful for...

With all this thankful talk on Facebook, Twitter and tv I starting thinking about my journey. Today I am thankful for my very special journey.
As I was reading the thankful statuses on Facebook yesterday evening, one in particular caught my eye. It was from a lady who is suffering greatly physically from a serious illness. She opened her heart a bit and for that I am thankful. She expressed almost exactly how I feel about the journey I'm on. You see, I've been having some long days, some exhausting, hard days but they do not steal my purpose or my true and deep joy. At the end of my day I am thankful. Thankful for all the goods. Thankful for the "not so easies", thankful for the gifts along the way.. No, I don't want Case to be sick, vomiting or uncomfortable but for the joys, the differences, the journey I am thankful. You see this lady has a big heart for the Lord. she knows his love endures forever. She is finding her strength in the journey and joy along the way. I admire her strength and her focus. During this journey of mine, my biggest prayer is that God's will be done, regardless of what it looks like or how uncomfortable it is. I desire His good and perfect will in every aspect of this ver special journey. I am also thankful for all of you.:) Thank you for following, praying and loving our very special Case! Thanks for being a special part of our journey.:)

The will of God will never take you...

Where the grace of God cannot keep you
Where the arms of God cannot support you
Where the riches of God cannot supply your needs
Where the power of God cannot endow you.

The will of God will never take you...
Where the spirit of God cannot work through you
Where the wisdom of God cannot teach you
Where the army of God cannot protect you
Where the hands of God cannot mold you.
The will of God will never take you...
Where the love of God cannot enfold you
Where the mercy of God cannot sustain you
Where the peace of God cannot calm your fears
Where the authority of God cannot overrule for you.
The will of God will never take you...
Where the comfort of God cannot dry your tears
Where the Word of God cannot feed you
Where the miracles of God cannot be done for you
Where the omnipresence of God cannot find you.--------Author Unknown

Friday, November 9, 2012

The Gift of Hope.

We know first hand how hard it is to spend time in the hospital beside a sick child. We also know the warm feeling that spreads through our hearts when someone comes to our sweet child's hospital room with a gift. This Christmas, please join us in spreading smiles to patients at Children's Hospital of Pittsburgh. We'd like to donate Christmas gifts to the children who can't go home for the holidays. From now until December 13th we'll be collecting donations. Below is a link including suggestions to make a little boy or girl smile this Christmas. Please note, in the hospital, infection is always a risk. To protect patients, the hospital can accept only new items or those items that are clean and in excellent condition. We appreciate your support and know how meaningful this gesture will be to patients and their families. We'll be rooting for hope and spreading joy to those not able to be where they should be for the holidays...home.

Please feel free to contact me for more info.:)

Case was born on December 21, 2010 leaving us McNultys to spend the Holidays at CHP and the Ronald McDonald House. It was the generosity of others that really made those holidays special despite the circumstances.

Thursday, November 8, 2012

Stress is served best with a side (or six) of coffee.

In the past 9 days, Case has had surgery, fevers, countless vomits, a short hospital stay, an appointment with the Ortopedic surgeon, an x-ray on his legs, hips and feet, a hearing test (that revealed some issues and led to a new specialist, ENT), a crainiofacial appointment, trips to and from Pittsburgh, a sore, healing back, extra meds, and countless beeping from his pump....on top of the Case issues, we had a showing for our house. It took all day and help from a friend to get ready for...but I'm SO ready to get this moving party started! If Dan's not working or driving he's often sleeping (due to the fact that he's working his ass off) and our three girls are extra whiney, fighty and cranky. Then of corse there's the usual phone calls, insurance issues etc., etc. Let's just say, this momma is worn out! So, then come the stress headaches. Ever so slightly they begin but with each passing hour they get more and more intense. They steal my day, my moments, my thoughts and my cuddles. When one gets so bad that I'm sick to my stomach and my very nerve endings hurt that's how I know. I know that stress has taken over and no amount of coffee or Excedrine for mirgrane is going to help. I feel like I'm drowning in my own pain and when you're stuck in an intense mirgrane, you feel like it will NEVER end. Like you'll be sitting at your child's wedding imagining putting you head in a blender just to stop the demon that is a stress mirgrane. Eventually they lift and you become normal again but this normal is still new. It's been almost two years since our normal readjusted and some days I feel like I still haven't gotten the hang of it. Like, I'm ready to "clock out" and take a vacation from my life. Some of this stress is "only for a season" and some will last a long time but either way if I keep my head in the game and my coffe cup full. I know I've got this. And on the days that I want to find a hole to crawl in I know that He's got me and that I will find strength in the journey.

Waiting for mommy to get done with her chiropractor appointment.:) 

Friday, November 2, 2012

I'm. So. Over. It.

This retching/dry heaving/vomiting crap, well I'm over it. Case had a really rough morning. For about two hours he would start retching, which turned into a dry heaves until he finally would over come his Nissen and vomit. That was then followed by crying out in pain. He is fed into his intestines so, his vomit consisted of stomach bile and Meds. This happened quite a few times. The first time or two, I laid in bed listening to his night angle in nursing scrubs whisper to him just praying it would stop. Finally, I got up and called Neurosurgery to have the Dr on call paged. The pain reliever and Zofran they sent him home on are such small doses, I doubt they even work. As I laid on his floor while Jane gently rocked him I thought of just how over the retching/vomiting I am. At this point if he retches/dry heaves too much he could open his incision and then we'd be in trouble. Little guy needs a break. I'd like to do it for him but I can't. Poor guy was in pain from the stress his body was putting on his newly cut open back. Well, he eventually stopped and sweet, selfless Jane finally went home. Two hours later the dr. still hadn't call so I called back, got a new doctor, higher Meds and the recommendation to call his GI with suspicions of the Meds not absorbing right. This stomach crap is really starting to get to me. You see, I'm a foot stomper and a squeaky wheel. More times than not I know what's best more than anyone else for my little guy and I bust ass to get it. I've refused things, appealed things, called, and called and called the doctors on call, and have done my damnedest to get Case the absolute best of everything but this, I can't fix this. We've been trying for 22 months to get his digestive system to work right and we can't. It's been a long, puke filled road and I'm tired. I will not let this enormous hurdle steal my peace or let it fool me into thinking Case should have been born "normal" but I will continue to work towards an answer.

Thursday, November 1, 2012

When You're here I'll never be lonley.

"So hold me. When You're here ill never be lonely. You're my favorite part of this story. So, sing it again and again.."

I woke up with those song lyrics in my head Tuesday morning during Case's inpatient stay at Children's. Case had his tethered cord release surgery on Monday and is doing great! We stayed at Children's until yesterday. I'm stayed in his room with him and had a peaceful stay. The hardest part was when Case reached his hands up and from laying flat in his hospital crib and said, "wanna ge owwwww" (want to get out). He had to lay flat for 48 hours. He's amazing and special for a very apparent reason. Hospital stays, needles, doctors and medications have become a part of his life so much that it's his norm and he walks down the halls like he owns the place. I've felt a particular amount of joy and peace this time around. I belong too. Being a special mom is who I am and runs deep in my blood. I talk in medical terms, fight for a single room and stop the beeping machines like a pro. I've seen so many familiar faces and made new friends. I ran into the geneticist and GI doctor just in passing and they booth stopped to talk about the special boy. It's apparent that God has written a different story for this family and He is my favorite part. When I laid on the padded bench in a cold hospital room with my "medically complex" kiddo just feet away hooked to tubes and IVs I felt a very apparent calmness, like god had His hands wrapped right around my heart and wouldn't let any of the sadness, fear and frustration that usually comes with a surgery and hospital stays go in there. I've read many stories and poems about special needs parents and agree with most of the words but my favorite part in those stories is when ordinary people become extraordinary because God has given them something that is often considered by the outside world as unsatisfactory. Dan and I were given a very special gift that has opened our eyes to a very blessed world. Even our girls understand that different isn't defective, different is beautiful and God knew that this family could handle a very special kind of beautiful.;)

When I breathe
It's like a song you give me to sing
And I sing "Oh... amazing"

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

When I sleep every morning
You give me a new day to dream
And you dream with me

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me
[ Lyrics from: ]
I love when you hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

My heart is whole
You're the light inside my soul
How deep is your love

You make me see
What it looks like to be free
I need your love

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

I love when you hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

Tell it again and again to me
Case sleeping on my leg the night before surgery.
Mr. Popular flirting with the ladies that made us a meal at the Ronald McDonald House.:)
Future doctor.
Morgan took care of Case in the NICU. We ran into her the night before surgery.
One of Case's favoroite NICU nurse's Elizabeth. She fell in love with him all over again.
Ready for surgery.
Getting checked out.
After surgery.
Just chilling on his back.
"Uncle" Chris came to visit.
Taking a ride.
Home sweet, home.