But It’s OUR Life
A few updates for everyone…
Today is Sam’s official last day with his NG-tube! Exciting, right?! Well… it’s his last day because tomorrow he will have surgery for a G-tube.
I’m sure people are thinking, “Wait, I thought Sam didn’t need the tube?” “Didn’t he go through the feeding disorder program and he can EAT now?” “Did they just give up?”
Okay, that last one is probably only in my head. My family and Adam yell at me every time I think that– the giving up statement.
Yes, Sam doesn’t technically need the tube. However, we can’t let him be 100% oral. Since putting the NG-tube back down, Sam has gained almost a full POUND. He went two weeks where not only did he gain nothing, he actually lost weight. His vomiting cannot be controlled by medicine, and thus we have chosen to rid Sam of the torture we put him through (daily now thanks to playful hands…) when we replace the NG. Shoving a tube down a 1-year-old’s nose is not a pleasant experience.
Adam and I always said if Sam still needed the NG-tube when he was 12 months, we would get the G-button. We are obviously upset that he will have another surgery (#8), but know it is in his best interest. This G-button is literally the size of a dime, and I should theoretically not have to replace it nearly as often–hardly ever, actually! The surgeon and pediatrician all assured me Sam wouldn’t even notice the button after awhile. And we will still have him eating orally during the day– we just cap his intake at 3-ounces, and do a continuous drip for 12 hours overnight.
A recent Gastric Emptying Study showed that Sam has severe GERD, and also delayed emptying. The surgeon was actually surprised Sam wasn’t throwing up more, even with his revised schedule. (Being that Sam was a 28-weeker, his insides never became “perfect.” This is not unusual.)
So wish us luck tomorrow– we need your (continued) prayers and support!
Also, a few weeks ago we found out my dad has prostate cancer.
Even after all we’ve been through this past year, finding this out absolutely shook my world. Cancer is something that happens to other people’s parents, never your own.
Dad is actually having surgery in Omaha in December. There is a renowned surgeon here, and hey, half of his family lives here too! Not a bad deal. We are confident they caught the cancer early, so thank God.
I had someone tell me a few nights ago that hearing about our life depresses them… They didn’t mean it in a bad way, just that we can’t ever catch a break.
Are there times where I think the same thing? You bet your butt I do! But then I think about how I would never know what true happiness felt like. Everything that happens good in other people’s lives is great in mine. It’s an emotional roller-coaster, but it’s our life.
3 Misters and a Sister 
Sending lots of prayers to you guys, especially little Sam. That is one amazing kid! (you too Jack)
So sorry to hear about your dad! I pray the Dr. did catch the cancer early enough and it’s all taken care of in one swoop in December!!
We love you all. 🙂
Praying for all of you, especially little Sam and Uncle Brad. Keep us updated- will be thinking of all of you!! ((((hugs))))
Jamie and family
Good luck tomorrow, Sam.
I love you very, very much!
Sending prayers your way! Will be thinking of you tomorrow.
Love to all….Nancy
You made the right decision with the G-tube.
Derek got his G-Tube when he was 4 months old. At first, we thought it was great – not having to use the NG. Later, we couldn’t wait to get rid of the G-tube, especially the nighttime feeds. (Derek moves around a lot at night, sometimes he would spin around and unhook the extension set in the middle of the night, dumping 16 oz of formula into the bed – messy, messy, messy) Then we went to MMI for Feeding Clinic and thought, Yes! No more tube. After 8 weeks of intensive therapy, Derek, like SAM, can eat/drink a good portion of his daily needs, but it isn’t enough. At first, I was disappointed that we would be keeping the G-tube for a while longer. Now, I am so thankful for the G-tube. Derek can eat and drink during the day (5 small meals, 4 oz each), and at night we know he is getting the rest of the calories he needs to gain weight and be a healthy little boy. It has been a roller-coaster of emotion for us, but I know he is getting everything he needs. And someday, he will be able to do everything orally . . . for now, I’m glad we can make it as easy for him as possible, so he can learn to enjoy eating! Don’t hesitate to email me if you have any questions. We’ve found that for some situations, like the tube coming undone, our GI didn’t have any good ideas for us, so we found our own solutions. (a little piece of Coban is great for keeping the extension connected to the G-tube during the night) Derek had severe GERD and slow motility, too, when he was younger. We think he has outgrown most of it, and he no longer takes meds, but he does still have volume sensitivities. 4 oz is his max in one meal. Hopefully he will outgrown that as well – time will tell!
Hopefully the G-tube will give you some peace of mind, and let you spend more time enjoying your family time!
If you haven’t looked lately, check out Derek’s CaringBridge site! We added some pictures from MMI Graduation Day!
Pam