A Very Special Case.

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.

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 pe...

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."...

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.

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, ...

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 ...

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.

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 ...

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 ...

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 ...

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!!

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 k...

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.:)

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".

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 t...