Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-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 intervieniouly 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 started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-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 and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-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.

Saturday, December 31, 2011

2011

We brought our baby home.
We all grew closer as a family.
We met more doctors, therapists, phlebotomists and nurses.
We made some sweet friends.
We spent countless hours at a beautiful hospital.
Just when I thought Case couldn't get any stronger, he did.
We saw our girls grow and love and serve.
I fell more in love with Dan then ever.
2011 was a great year of growth, relationships and love.

Here's to a beautiful 2012.

Pediasure, cute-scoot and all things Case.


The doctor changed Case from Enfamil Enfacare to Pediasure. I don't know why this excites me so much but it does. It could be that it makes my job a little easier or that Pediasure is more caloric. Whatever the reason I'm very happy for the switch.:) Case gained a total of 4 ounces this week bringing him up to 11 pounds 7 ounces. I'll take it. I had this crazy idea that the weight would pack on at a rapid rate. That isn't happening. We averaged less then 1 pound this month. I'm not complaining. Just had to get rid of my  expectations. I still struggle with getting him to eat enough calories in a day. I can only run 38 ml's per hour for 8-10 hours at night,  which means he needs to have consumed more then half his total calories by around 10 .It's hard not to be stressed about this every day. Somehow, even when it looks like we won't hit our calories, we usually do. I sometimes have to forfeit a few. I have decided to trust Jesus and to be kept in His perfect peace and to try not to give into life's aggravations.

A peaceful man is not compleetly free from the pinch of life's aggravations, he simply declines to give them power and refuses to be held captive by them. -Dodinsky

Being Case's mom I've learned that what works for most babies doesn't always work for my mini-man. Like those dumb wooden highchairs (no matter how small I make the straps, they don't hold him in. He turns completely around and makes friends.) or shoes! He needs a size 1. I'm not talking a "crib shoe". I'm talking an actual real, supportive sneaker. After several phone calls and one email to shoe stores and shoe makers I think I found one pair that will work well! I'm very excited about this as his Physical Therapist said it is very important. I am blessed.:)

On another topic, I wanted you all to see Case's cute scoot. He used to creep but now that he has the Mic-key button, he scoots on his butt. It's really cute. He still walks around holding onto the furniture but when he wants to get around fast, he scoots like this:





Friday, December 30, 2011

And I've gotta trust You know exactly what You're doing.

During my stay in Pittsburgh (after Case's birth) I heard a song called "This is the Stuff" by,
Francesca Battistelli. It really hit home. It's about all the little inconvinces in life and how they can drive you crazy. I am reminded of that song often. Little things bug me sometimes. Like, when I spend 45 minutes on the phone with Pittsburgh and nobody can find Case's nutritionist. Really, the operator at Children's said there were no nutritionists with the name Jessica in the whole hospital. She must have dropped off the face of the earth. I was frustrated. Or, like the tape thing. Have you ever tried to keep ANYTHING on a one year old's feet?... Or when Case's feeding pump starts beeping uncontrollably at 4am. Or when I pulled his Mic-key button out....I could go on but you get the point. Little things happen all the time and I lose focus of Jesus and His beautiful plan. "In the middle of my little mess, I forget how big I'm blessed." Little mess= inconveniences that I let bug me. How big I'm blessed=Case.

The lyrics:

I lost my keys in the great unknown
And call me please 'Cuz I can't find my phone

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

45 in a 35
Sirens and fines while I'm running behind
Whoa

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world
Oh Oh Oh

This is the stuff that drives me crazy
This is the stuff
Someone save me
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
And I've gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

Oh Oh Oh Oh
This is the stuff You use

Sunday, December 25, 2011

Christmas past and present.

Christmas is a time of giving. A time of love, joy, peace and family. Last year Dan, the girls and I spent Christmas in the NICU and at the Ronald McDonald House. It was hard in ways being away from home but we were more then blessed spiritually, emotionally and materially. We enjoyed a meal of what ever our family wanted in the cafeteria bought by a family we never met. The girls got gifts that were donated the the RMH. Case got several gifts donated by organizations and families. There were many more gifts given to us and I am more then thankful. I was also given the gift of good fruit. Jesus was and is in me. It was glorious. Now, as I sit on my couch I'm not taking one minute of this beautiful Christmas or last for granted. I will never forget the blessings that flowed last year and am also thankful for Christmas at home this year.

Friday, December 23, 2011

Easy is over rated.

Last year at this time was ...a blur? I was released from Magee and began my temporary residence at the Ronald McDonald house/Children's hospital on December 23rd. The first few days are blurs in my memory. I had just had a c-section. I didn't get my perscription for Percocet filled so I was walking around the hospital "recovering" from a c-section and half delirious. At one point on the 23rd I remember breaking down. It was 7 pm and the day nurse was giving Case's night nurse report. It sounded aweful... "multi-cystic, dysplastic kidney, dilation and or blockage of the other kidney, posible coarctation of the aorta, a large VSD, an ASD, severe hypospadias, unfound testis, IUGR, unknown syndromes... and on. It was too much. I broke down. Right there, in front of the nurses I sobbed. I didn't even try to make it to the bathroom. I just let it all go. "This isn't how it's suppose to be." I thought. "I should be home, nursing a big, healthy baby. Spending time with Dan and the girls. Admiring my Christmas tree." It wasn't easy. In fact, it was really hard. The hardest part was walking out of his room. They let us hold him for 15 minutes each on Christmas eve and for weeks after that it was only 15 minutes. He was under the billy lights for jaundice for the first few days. I wasn't alowed to feed him. Really, there weren't a lot of reasons to be in his room but when I left him, I ached. I left a part of my body in the NICU. He was a part of me. He spent 8 months inside of me and I ached for him. Just going to the local Walmart made me cry. I wanted him in my arms so bad it hurt. It wasn't being away from home that was hard it was feeling like he belonged to the NICU that was near impossible. But easy is over rated. Easy didn't make me grow. Easy didn't make me love. Easy didn't lead me to Jesus's voice. Yes, easy is nice but easy is not what God had in mind for Dan, me and the children. God has a bigger picture. A better plan. It's not always easy but easy is over rated any way.;)

Welcome to Holland!!

Case's nurse was in. Slow and steady is what I would use to describe Case's weight gain. One more ounce.;) I love his nurse. She's good, reliable and has become a great friend.

Any way, we got to talking and she told me a story called "Welcome to Holland". It's about a woman who plans a big, life changing trip to Italy. She buys all the guide books, learns the language and gets on the plane. When the plane lands, the stewardess says "Welcome to Holland!". The woman says, "Holland, you say?!? What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
The stewards explain that she is in Holland and that is where she'll stay. My favorite part in the story is where it says, "So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met." There is nothing wrong with Holland. In fact, when she stops and really accepts that Holland is where she is and where she'll stay, she says, "and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts."The very last part of the story says, "...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

I'm glad I'm in Holland, even though I expected Italy. :) I treasure the lessons, the relationships and the beauty of Holland. Most of my friends, my sister and lots of other people are going to and from Italy. But Holland is where I am and Holland is where I want to be.;)

Wednesday, December 21, 2011

You've come a long way, baby.

Today Case is one. It's been one heck of a year. I wouldn't change one moment or take back one tear. Blessings came from rain drops that poured down like a storm. His healing came though pain. It felt like it took a thousand sleepless nights to know He's near.

 This has been a beautiful year. I am thankful for every appointment. Every trip there and back. My talks with Dan. For Case's doctors. For the hard times and the easy. For the relationships and the many, many people Case has blessed. This little boy has been through more in one year then many people experience in a lifetime and all the while he has never stopped loving. Never stopped smiling. Never lost His peace. He is truly a gift. Case's aunt got him a birthday card and this is what it read:

Here's to many more years of being bigger, stronger and bolder.

Tuesday, December 20, 2011

It's not fair.

Case's nurse was in. He didn't gain a lot of weight. His Physical Therapist was in. There are some issues we are working on. They don't seem to be getting better which means I will need to tape his feet and up his legs some. I tried to contact someone about his calories. It didn't work. I felt defeated. I thought to my self this isn't fair. Babies are born all the time with two functioning kidneys. With every thing formed right. They are born and they eat and they grow. It's that simple. I know because I had three of these babies.

I was right. This isn't fair. It's not fair that getting Case to grow is this hard. It's not fair that he has a bad kidney. It's not fair that he has a button in his skin and tape on his feet. It's not fair that I have to work so hard for him. It's not fair that he will have up to four surgeries before his second birthday.

With all that on my mind, I am reminded that this journey is a gift. That no one ever said it'd be easy.
No one ever said life is fair. I am challenged. I am growing. I am loved beyond explanation. I have been given a gift not a problem and even on my hardest days....I am grateful. Oh, and Case...he's perfect.

Friday, December 16, 2011

December 20th and 21st 2010

Last year on the 20th of December, 2010, Dan and I had another hard day. It started out normal with a routine sonogram in Johnstown. I didn't feel like going. I was tired. Tired of bad news. Tired of more and more problems. Tired of traveling. Just tired. Needles to say we went anyway. The tech immeadiatly saw that Case's cord blood was dangerously low and so was the amniotic fluid. The doctor came to the room immeadiatly and sent us to the hospital across the street for a non-stress test (I was very familiar with those. Having them routinely twice a week). Case passed the non-stress test which meant he would let Dan and me go to Pittsburgh. Right before we left he told us good luck and he hopes all goes well. I hugged him and cried. That was the last time I saw that dear, lovely doctor. If Case would have shown serious distress I would have been c-sectioned in Johnstown and Case life flightef an hour and a half away from me to Children's. I was thankful to have the time to go to Pittsburgh. Once we arrived at Magee's women's hospital they put us in a small room. I layed on a padded table and they hooked me up to monitors for hours. At one point Case's heart rate dropped so low several nurses and a doctor rushed in. I want to say it went down into the twenties. I prepared myself in those seconds to say good buy. They were going to rush me in for a c-section right away but he stabilized. They did another sonogram and admitted us to a room. There I was monitored all night. At around 8:40 am on the 21st a team of three doctors came to my room with a sonogram mechine. They took a small amount of amniotic fluid to see if his lungs were developed enough. It was hard for them to find a "big enough pocket" of fluid all together but they did. It only took twenty minutes to get results. His lungs were good! They immediately took us to the OR and strapped me down. It only took around 10 minutes before we heard him cry. I still tear up when I think of it. It was the most beautiful sound in the world. There were dozens of neonatal doctors and nurses on the room. They didn't let us see him right away. Dan even asked and they said no. They had to "assess the severity of his problems". As they rushed him to the table (we couldn't see him. There was a drape in the way). I heard a nurse say, "he looks nice and pink. I don't think his heart problems are as severe as they thought.". We found out a few days later, she was right.:) Anyway, they finally brought him to me. He was so beautiful. All 2 pounds 13 ounces of him (he was 13 and 3/4 inches long). My arms were still strapped down so I asked the nurse to bring him close to my face. She did. She even opened the front of his blanket (he was all clean and swaddled) I kissed every bare part of his body. It was wonderful. They quickly took him away again and put him in an isolate (a heated glass box) and wheeled him to my room. Dan and I said good buy. And the flight nurses flew my baby away. I had to stay at Magee till I was recovered.

I will never forget the pain, grace and blessings I felt in just 24 hours. This was the start of another journey. Another beautiful, unknown, amazing journey. I am thankful for these journeys and that I have been chosen.;)

Wednesday, December 14, 2011

It's the most wonderful time of the year.

I'm am more excited about Christmas then I have been for awhile. I'm excited to spend Chistmas at home to have a husband and four beautiful children to spend it with. I'm just excited all around! Last year at this time we didn't know where we would be spending Christmas. Although they had a c-section scheduled for January 10th I had a feeling somehow he would come earlier. My gut was telling me he needed to come out earlier then that. I felt like he wasn't growing for a reason and that the reason wasn't a syndrome. The doctor that scheduled the c-section said he had an unknown syndrome causing his lack in growth and there was no reason to take him out any earlier. I quietly disagreed and asked God to bring him out when HE wanted him out even if that meant breaking all tradition. Even if that meant spending Christmas in the Romald McDonald house with the girls. I didn't care about Christmas dinner so much any more. It really put things into perspective. It turns out God wanted him out on the 21st.:) I'm so gald he came out in time for Christmas and I am looking forward to another wonderful Christmas.:) Spending those 38 days, including Christmas in Pittsburgh changed me and this family forever.:) It was and is the most wonderful time of the year.

Case is awesome! He now weighs 11 pounds! He is such a blessing.

Saturday, December 10, 2011

Medical update.

Medically Case is doing well. His fontanel is finally getting smaller. He is slowly but surly gaining weight. 10 Pounds 13 ounces!:) He changed his army crawl to a half sitting/half crawling kind of thing (to avoid scooting on his Mic-Key button:). He pulls himself up and walks holding on to furniture. His liver ultrasound came back normal!! He still sees Occupational Therapy (for eating) and Physical Therapy regularly. He has a home nurse coming 2-3 times a week for a while to monitor his weight and over all health. I feed him orally all day then give him remaining calories thought his tube at night. Sometimes It gets confusing and more times then not I end up with formula and stomach juices on my pants and the carpet. Maybe I should get the carpet in his bedroom cleaned for his birthday. :) Oh, Yeah... the big guy will be one on the 21st! All and all he is perfect, happy and a blessing beyond measure!:)

 Do you see that? I'm pretty sure it's a double chin!!

Thursday, December 8, 2011

December 8, 2010.

One year ago today, on the 8th of December I had what was easily one of the hardest days of my life. We had a day full of appointments in Pittsburgh. We did this monthly but this day was the hardest. We spent around 8 hours there. Going from surgeon to OB to sonogram to another sonogram to a genetics counceler to a cold room with a big desk and a doctor that told us there was a good chance our son would die and we needed to prepare ourselves for that posibility. His growth was still greatly lagging. His one kidney was in really bad shape the other looked blocked. His heart was said to need immediate repair after birth. They thought his fingers were fused, his rectum was closed and on and on. The people that spoke to us had general concern and confusion on their faces. The same doctor that told us Case may die also said that when he was formed his "computer program" was messed up. Some links were missing. He said Case had some sort of horrible syndrome. They just didn't know what yet. He said Case wasn't made right and he had so many problems that he very well could come out unable to eat, grow and thrive causing him to die. I left Pittsburgh in a blurr. Head pounding. Beyond exhausted. I even vomited on the way home. I lay awake that night pleading with God for our son's life. That he would not only live but live a good life. I begged him to tell me if Case would live or die. All I would hear is the baby saying "I'm okay mom." As a matter of fact I was laying in bed early the next morning thinking of the baby. Feeling like I couldn't handle any more. I remembered the verse that says God won't give us more then we can handle. I said, dear God... I'm not this strong.... I can't handle much more... I sent Dan a text saying that I just wanted the baby to be okay. As I lay there awake I had this vision of a little baby floating around in my belly, he said, "I'm okay mom" with a smile on his sweet face.:) Shortly after I had that vision Dan replied to his text with this: "I'm okay, mom"- Love, the baby. And he was whether he lived or died he did and does belong to Jeaus and will always okay. I do feel very blessed to have him as a part of our lives and to be his mother. :) He wasn't as terible off as the doctors thought and his heart was miraculously better then they thought. Of corse, when I saw him for the first time, I thought he was and still think he is perfect!;)

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise..

Isiah 41:13
For I am the Lord your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you.

Tuesday, December 6, 2011

Blessings come through a mini-man born with anomalies.

Take 5 minutes to watch this video. You will be blessed.



So, Case's nurse was in. He gained the weight he lost plus an ounce. That was nice.:) He is active, smiley and perfect.:)

Sunday, December 4, 2011

Take my will and make it Thine, It shall be no longer mine.

My desire as a mother, wife, a daughter and a women is to be consecrated, Lord to thee. The name Elisabeth actually means "consecrated to God." I've grown to adore my name and it's beautiful meaning.

Case's life and challenges have opened a door to a growth within me that I didn't know existed. I was talking to a lady the other day and she was in awe of my attitude in these challenges. I can not change the way Case is, nor do I want to. I can not make him gain weight (even with the tube in he's lost some). I can not fix his kidney or any of the other anomalies. I am only in control of my attitude. My choice to follow blindly His perfect will. Granted, I have desires. The desire for Case to grow and live a strong, long life. But ultimately my prayer is: "Take my will and make it Thine. It shall no longer be mine".



Thursday, December 1, 2011

Pot holes and detours.


My husband describes this journey with Case as a road with pot holes and detours. He's right. I'd like to add that there are also bumps, valleys and hills.

Last night Case fell in a pot hole which lead us on a detour to Altoona Hospital's ER. We weren't planning on that trip. The girls and I were watching t.v.. Dan was sleeping for night shift and Case was playing on the floor in front of me. He started crying so I picked him up. I didn't realize his tube (he has to be connected to a long tube and a bag for 24 hours for 2 weeks. After the 2 weeks he will only be hooked to a tube at night for feeds.) was caught on something. I felt his Mic-Key button, tube and all pop out. He started screaming. Liquid came out of the now exposed hole and covered his shirt. The color drained from his face. It was vital that we rush him to the local ER since the the button was recently placed and the hole could close quickly. My dear, sweet mother-in-law came immeadiatly to watch the girls and off we were. Once in the ER I was still a little shaky but Case, well he was just fine.:) He lay there on my lap, face pale, oozing hole in his belly (I covered it with gauze) and he was smiling. In the 5 minutes we waited to be called back, he had made friends with everyone around him. He smiled, waved and chattered with them all. As I looked down at His perfect baby my heart filled with gratitude. Peace overflowed within me. The fear that had previously overcome me had gone. Long story short, all went well and Case took an uncomfortable opportunity to show pure love.

I thank God for this road we are on. The path is narrow and I can only see a few steps in front of me but I feel blessed. Thankful beyond words to be Case's mom

I have faith that God is living out a divine plan through me. Have faith in God. -Mark 11:22