A Very Special Case.

Today is day one of Feeding Tube awareness week. The topic today is: "Tell your story. Educate people as to what life with a tube feeder is like." Case has struggled with eating his whole life. He spent 38 days in the NICU leaning how to eat. I finally got him to take just enough breast milk from a bottle that they took the NG tube out of his nose and sent him home. Once home the battle only got worse. Case had to be fed round the clock every 3 hours with pumped, fortified breast milk. I was the only one he would take a full feeding from (and by full feeding, I mean 1-2 ounces, at best). He had a weak latch, swallowing issues and other birth defects/stomach problems we didn't find till later in his life. I continued to try to get him to breast feed. The harder I made him try, the more weight he'd lose. Finally, after 4 months of pumping, fortifying and begging my milk dried up and I grieved. I grieved because my hopes and dreams of a breast feeding, 4th ...

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and  Dr. Ruldolph   (GI Dr.) mentioned the possibility of giving Case GJ tube. "A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department. GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)." This tube would stay in his body most the time. If the tube got pulled out we would go ...

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 yo...

Our sweet special boy named Case Does all things at his own pace, Would not eat or grow His weight was too low, So we prayed and relied on God's grace. Making him eat was real tricky So they had to install a Mic-Key, From a bag and a tube Come nutrition and food, But some days it makes him real sicky. Anomalies, Case has a lot, Against all odds sweet boy has fought, He's become a town hero Regrets, we have zero, Through this blessing I birthed we are taught. I wrote this very special poem for our boy with the help of my friend Terri and her daughter. I entered it in a contest to win a pump back pack (see yesterdays post.:) Thanks to all who voted yesterday. Case did not win but a very deserving little boy did.:) If you haven't liked Pumpkin Packs on facebook yet you can click  here .  Like it. Look around. Buy an electronic gift card for your favorite tubie or sponsor a back pack for a needy tubie.:) Speaking of tubes, Case's has helped him get ...

I made an adorable poem for our tubbie Case. Pumpkin Packs on facebook is running a contest. Go to their page by clicking on this  link . Scroll down and find the poem I posted about Case. If you like my poem and it gets the most likes, he will win a backpack like this: It is a special backpack that His feeding pump goes in so we can run feeds on the go!:) Happy liking!!

Tonight while I was rocking sweet Case I was thinking about his feeding issues. He maybe takes a few bites and and ounce on a really good day and by day, I mean 24 hours. I was really wanting him to eat again. While I am thankful for the tube, I desire a bit of normalcy when it comes to food. As I rocked Case I spoke to him, to his belly specifically and told it to empty, to grow, to be hungry again. Sounds little silly, I know but when I was pregnant, I would put my hand on my belly and speak healing to every part of Case's body. It worked for his heart and maybe for some other issues. I would end those prayers something like this, "Jesus, these are the desires of my heart but above all I desire your will to be done." That was a scary prayer to pray. I gave this baby to Jesus. I find myself  (sometimes daily) giving Case to Jesus. Every time I worry, every time I fear, I take him back. Then out of my peace-less-ness, I realize I need to give him back.;) Tonight while I ...

When Case was tiny and in the NICU I knew that if he didn't eat and grow he would get a G-tube placed. I was relieved that he was sent home tube free. I don't know why the G-tube made me uneasy back then but it did. Maybe it was the unknown of it all. Well, at age 11 months we bit the bullet and he got the dreaded tube. After 11 months of forcing, begging and pleading with him I stopped fighting the inevitable and buckled up for the G-tube journey. I have to say, I am very thankful for it. Without it Case wasn't thriving enough.  He was loosing weight and looking sickly. He now is gaining around a pound a month and has filled out nicely. The G-tube is a wonderful gift that has enhanced his life. That's the good. The bad is that what he eats by mouth has dropped significantly. It's almost like he knows the eating by mouth is hard work for him. He'd rather just sit and be fed through his trusty tube Also, with feeds as frequent as they are he is rarely hungry...

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran Hard to think of Case as a massive character. But he is. He's had some rough nights lately. I would wake up to him screaming and sometimes retching. Case can't vomit because of the Nissen wrap.  RETCH: noun: an involuntary spasm of ineffectual vomiting; "a bad case of the heaves" It's no fun. He was having a hard time tolerating his night feeds. He wouldn't eat much during the day causing me to run 10-11 hour feeds at his max of 39 mls (a little over an ounce) per hour. On top of that his pump broke at some point and was putting extra into him. It was only a few extra mls per hour but was not good. We got his pump replaced which lessened the times he was waking to retch but he still couldn't handle the long feeds at max volume. Sometimes the retching would get so bad, I would open his stomach tube and let him "vomit" out o...

Once Case was born and his health problems were addressed, the only thing keeping him at Children's was how little he weighed. A couple friends of mine (husband and wife) used to say, "Grow, Case! Grow!". Throughout his life that kind of became his chant. Lots of people say this to him often. Like I said before, having the tube in his belly didn't produce the results I expected at first. His gain was slow and he even had a loss since he came home from surgery. This week though, he gained 6 ounces bringing him up to 11 pounds 13 ounces. Awesome!! Getting him to eat enough has been a struggle his whole life. I've had to give this to God over and over. For three months I begged Case to nurse. I pumped, stored and fortified my breast milk until I couldn't any more. The whole time desperately trying to get Case to nurse. He would latch on sometimes and suck a little. But doing that too often would wear him out and cause poor weight gain. Eventually he wouldn't ...

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...

A home away from home. We stayed at the Ronald McDonald house Thursday night. Case had a total of 3 appointments, blood work, a sonogram of the liver and a cookie swallow test Thursday and Friday. I was thankful for an inexpensive place to stay but the Ronald McDonald is so much more than that. It is a place with other moms and dads that have felt what we felt. Have cried like we cried. Have heard aweful news. Have heard wonderful news. Have seen miracles and ones that have not. Most of all the Ronald McDonald House is a house of many blessings. Almost every night generous groups, families and even Ben Roethlisberger  donate meals. There are toys and gifts for the children, free laundry facilites and always food and drinks for free. But the blessings I have enjoyed the most are the non meterial ones. Friendships have been one of those nonmaterial blessings. Mostly the one I made with Lisa. You can follow her inspiring story of her son who has overcome a life treating birth  ...

I know those aren't the lyrics. But that's the song that's been in my head lately. Case had a pediatrician appointment  this past Thursday. His weight gain in the past month month was mininal. It's looking like he will need the G-tube. He now weighs 10 pounds 8 ounces. It's a lot of working getting him to eat and drink. It's exhausting. I was rocking him the other night and thinking about the blood work we had done in September (with Genetics). We got the results in the mail Saturday. But before we got the results I was rocking him and thinking (worrying). I said to Dan, "What if the results come back someday and he has a horrible syndrome that says he won't live past 8 years old?" Dan said, "Then I would suggest you stop worrying and love every minute with him". What a good perspective. None of us are promised tomorrow or even the next minute. It's time we embrace the situation we are in (good, bad or indifferent) and go with it. L...