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.

Sunday, April 29, 2012

Of pediasure, poop and prayers.



Case has been on the new Pediasure Peptide 1.5 for about 13 days now. The plan is to take a 2 week trial on it before switching him completely. Here is a short list of the Pediasure Peptide 1.5 pros and cons compared to the Pediasure 1.5 he used to be on.

Pros: 
*Vomits and retches seem to be less then before (I think). Now he has around 3 to 5 (sometimes more) vomit and or retches in 24 hours instead of 7+.
*It comes in a bottle instead of a can. Not a big deal. It is more convenient though.
*He is not constipated any more and we stopped the med for constipation.

Cons:
*Diarrhea. That's a big one. If it continues, he will be switched again. It seems like every day it gets a TINY bit better but sill diarrhea like.

So, That's that in the poop and Pediasure department, on to the "prayers". Something really cool happened today that I thought I'd share. Case started to cough and retch so Lainey (his 3 year old sister) ran to grab a towel. As you may have read in a past post, this is nothing new. She often catches his vomit in a mommy like fashion but today was a little different. I stood back a little bit and just let her do her duty. As I was watching I heard mumble mumble and "..and help feel him better. Amen". She was preying for him. SO CUTE! That was a great Mommy moment that I was blessed to experience.

We head to Pittsburgh Children's Hospital tomorrow to visit the Cranial Facial clinic (there are some possible concerns with the structure of Case's throat). Hopefully there will be some answers on why he has such trouble swallowing. He will also have an upper GI. This will show the doctors if his Nissen wrap is still intact or not and will also (possibly) give him some answers on why Case vomits/retches so incredibly frequently. Poor guy, I can't remember the last time he went a whole day without vomiting. That's all for now. Thanks for caring.:)

 Case and Lainey.
Case and his cool new feeding adapted shirt from Sweet P Styles.

Friday, April 20, 2012

A glass half full.

A few weeks back I was told I'm a glass half full kind of girl. I really appreciated that. It was, of course, said by one of the women that help Case along his journey. In the weeks since she said that, I was really examining myself and trying to figure out what makes me the "glass half full" type as to not let it slip away. I thought of Case, and how I know no other ways for my fourth child. Sure, I have three other children all without disabilities or special needs, but each child is distinct. I try to not compare and have only ever known this way of life for our fourth. Case has become a my new kind of normal- so much so that when I'm watching my 6 month old niece SHE seems different. In the back of my mind for a split second I "watch out" for her Mic-Key (which she of course doesn't have). I don't lay her on her back after she eats so she doesn't vomit (then I realize, she doesn't have reflux). I even find myself impressed when she drinks a whole 5 oz. bottle at one sitting. You see, I can't miss what I don't have if I don't want it making me optimistic. I don't want to fix Case, because Case isn't broken. Sure, I have my days. Days when I'm tired- tired of feeds, appointments, and vomit, but to give all that up would also be giving away this very special journey that we as a family are blessed to be on. On those days I readjust my focus. I take it off of the inconveniences and back to the big picture. So here's to all the glass half-full girls [and guys:) ]. Keep up the good work, and know that you are on this road for a reason. The grass isn't greener on the other side of the fence just different.  :)


Saturday, April 14, 2012

Information overload.

Case had his appointments Thursday. First was Dr. Schneck, the senior surgeon with urology at Children's. He's the surgeon who did his surgery on March 2nd and will do the next 3 surgeries on his boy parts. He said everything looks good and is lowering his "family jewels" ;) on July 9th. We were told to pack a bag and leave it in the car. So, it may or may not be out patient. Next was Dr. Ruldolph with GI. I love him and he loves Case. He asked how things in the feeding area are going, not great was my answer. Case has been vomiting and retching up to 12 times a day and sometimes through the night. He seems uncomfortable after most feeds.  He's showing a little interest in taking things by mouth but has a very hard time swallowing. He lost weight. Not a huge concern but still not ideal. Dr. Ruldolph is checking him for soy and lactose allergies. He also ordered an upper GI for April 30th, a swallow study for June 21st and switched him from Pediasure 1.5 to Pediasure Peptide 1.5. Here's to hoping somethings get straightened out so we can start getting him back to eating and drinking by mouth. Next was Endocrine. Nothing exciting there. He's small (duh;), they will give him growth hormones when he is 3 if needed. They are running some more chromosomal tests soon and want to see him back in August. Last we visited the lab. I've learned to request Michelle from the IV team. She is allowed to and comfortable with taking blood from his head. Case is a "hard stick". For a long time the phlebotomists would stick his arms, hands, legs and feet with no luck, they aren't allowed to stick his head so they would call a member of the IV team up to do it for them. Now we just get the IV team right away.

All and all our boy is good. The biggest hurdle in front of us right now is his feeds. Poor boy is throwing up so much Lainey runs for a towel as soon as he starts coughing and retching. She stands with a towel under his chin and catches his vomit until he is done. He doesn't throw up a lot at one time because of the Nissen but I would love to get the vomiting under control.
Case from that day.:)

Friday, April 13, 2012

A special kind of bond.

There's just something about another NICU mom. A bond that is unexplainable. I met Lisa in January, 2011 the day she was discharged from the hospital (just a few days after the birth of her second son). I first met her aunt on the Pent House floor of the Ronald McDonald House. The Pent House is a beautiful place designed for families to connect with each other and other families. I met a lot of families up their but Lisa's was different. While speaking to her aunt I opened up. She was a stranger but I didn't care. I told her all about Case's medical history and otherwise. She was so sweet and understanding. She told me of her niece and her great nephew who was now in the NICU fighting for his life. It was then I fell in love with Ramsey, his mother, grandmothers and whole family. Lisa and I have been good friends ever since. We talk of things that none of my other friends understand, not because they don't love me but because they were never NICU moms. They were never told their boy might not make it. They never stood at rounds while doctors spoke and their heads spun with news good and bad. They never walked into a room with beeps, wires, tubes, needles and a small helpless baby that was theirs. Lisa is strong. Ramsey even stronger. He fought (and is fighting)  a good fight with Jesus on his side. I feel privileged to have met him and his beautiful family. If you would like to read Ramsey's blog Rooting for Ramsey, click here.


Wednesday night Dan, Case and I met with Lisa, Dennis, Ramsey and his older brother Reed for dinner in Monroeville. It was great to get together. Our NICU days are behind us and our future is bright.


 Sweet Ramsey Razza in the NICU over a year ago.
 One of Case's first pictures. He is also in the NICU.
Our super boys now. Good job boys. You've come a long way!

Monday, April 9, 2012

Fan-freakin-tastic.


I wrote this a few days ago and am just now getting around to posting it.:)


Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days at Children's much easier.:) The home nursing is going well too. Can I just say, I love having 8 hours of uninterrupted sleep? I still hear him but then hear a nurse come sup the steps and i know he is in great hands! I feel so blessed to have such wonderful help. I have really fallen in love with his nurses and of corse, they all adore him!

Dan and I are taking him to Pittsburgh Wednesday evening and staying the night. He has a long day of appointments that start early Thursday morning, the twelfth. Urology (with his surgeon), GI and Endocrinology. He has to go back again the 30th to the Cranial facial clinic to check his throat.


Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days at Children's much easier.:) The home nursing is going well too. Can I just say, I love having 8 hours of uninterrupted sleep? I still hear him but then hear a nurse come sup the steps and i know he is in great hands! I feel so blessed to have such wonderful help. I have really fallen in love with his nurses and of corse, they all adore him!

Dan and I are taking him to Pittsburgh Wednesday evening and staying the night. He has a long day of appointments that start early Thursday morning, the twelfth. Urology (with his surgeon), GI and Endocrinology. He has to go back again the 30th to the Cranial facial clinic to check his throat.

That's all the news I've got for now. I'll keep you all updated.:)That's all the news I've got for now. I'll keep you all updated.:)

Trying out one of the strollers.:)

Wednesday, April 4, 2012

A very special choice.

I Still would have chosen you - By Terri Banish.

If before you were born,
I could have gone to heaven and saw all the beautiful souls,
I still would have chosen you... ... ...
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you.



Case is a beautiful soul. More beautiful than most anything I've ever seen. We are blessed to call him our son. We have never regretted, never suffered because of his differences, never asked for a different child. He is perfect for us.<3

Tuesday, April 3, 2012

A very special marriage.

Dan is very special. Our marriage is also very special. Dan was 20 and I was 19 (I was not  6 months out of high school) when we married. I'm not going to lie. Marriage wasn't always easy. Anyone who says marriage is easy is either a saint or a liar. It's hard. It requires work, dedication, commitment and most of all selflessness. I once heard an interview of a hundred year old woman who was celebrating her 80th wedding anniversary. The interviewer asked her how they stayed married for so long and she responded, "We never fell out of love at the same time.". I really liked that. In my marriage there were times when Dan or I weren't giving 100% to the marriage but the other (usually) did.I found that as a wife I can't make Dan the best husband. I can't make him be what I thought "a perfect" husband was but if I love him at his lowest moments and try to give 100% all the time I've found that he loves me back even more. He becomes exactly who he needs to be for me. Our marriage has never been perfect but it's ours and it's blessed me more then I would have fathomed 8 and 1/2 years ago. Dan really is perfect for me. He is strong and dedicated. One of the hardest working men I know. If you've ever met his dad and grandfather you'll know why. He comes from a long line of hard working, dedicated, caring men. He loves. Together we have created a Very special family and I couldn't have picked a better man to do it with. Dan is not perfect but he is perfect for me.;)
2000
2001

November, 25th 2003


Sunday, April 1, 2012

A very special Lainey.

Where do I even start? This kid is like a giant ball of crazy cuteness! She has a fire belly and joy in her heart. She is three so there are challenges daily. But at the end of the day, it doesn't matter how many  pieces of "abc" gum she chewed or how many times she sang, "I'm sexy and I know it" she will always be our baby girl. She is very helpful and with direction and teaching a very good sister. She keeps me hopping and laughing. Her name means, "bright, shining light". It fits her well. She is beautiful, strong and original.