Feeding Tube Awareness week 2014- Day 4

Today’s topic: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

The challenges of tube feeding… I just have to laugh a little when I hear a question about tube feeding challenges.

Over the past year I have read and personally heard some crazy comments about tube feeding. There is a diet for brides to be that uses a feeding tube to lose weight quickly. There are a bunch of prisoners in a controversial prison that got feeding tubes because they refused to eat. I personally was told this year that with Jillian’s eating difficulties I don’t try hard enough. Tube feeding gets plenty of bad press.

Tube feeding does have its challenges. I think I have slept 8 hours consecutively less than 10 times in the past year. I love sleep, however her pump must be filled at 10pm, 2am, and 6am. You give up sleeping though the night and you will realize the sacrifice, but I will gladly do this forever if this is what she needs.

She does a lot of carrying her backpack but lugging that thing around sometimes is a pain. It gets caught on things and you are always trying to figure out where to put it or attach it when she is not wearing it. We are fortunate to have a lightweight Infinity pump. We started off with a Kangaroo Joey pump and while that pump is very user friendly, it is not very kid friendly. Around the same time she got her GJ tube, we switched to the Infinity pump. It is more light weight and can be tipped in any direction. I remember the first feeding pump I ever used with a child (not Jillian). It was huge and there was no way someone would carry it on their back. We are so fortunate that technology has come so far to provide a better life for tube fed kids.

A big challenge is insurance. I got the packet in the mail today to work on the process of getting her a secondary insurance to help cover the medical bills. The person in charge on enrollment said she is borderline in qualifying and we will have to see if she makes the cut once all the paperwork is filled out. The expenses for a kid like Jilli are crazy. Her formula costs $15 a day, $105 a week, $450 a month. I fed 3 adults for a lot less than that. No one willingly goes out one day and chooses for no reason to have their child on formula like this. Issuance companies seem to think parents do, but trust me, you smell that stuff one night when you make it and you will not want to have to smell it again. Then there is the cost of meds. I feel like that cost rises every time I turn around. However, we are fortunate to have insurance. The amount the insurance company paid for her last year was over 4x the amount Brent made last year. It is a lot more then we bought our house for. There is no way that we could have paid for last year out of pocket. We are so grateful to have insurance. It is such a blessing.
When your child gets a feeding tube they don't give you a little book with an answer to every question you will have. It is a lot like parenting. Thankfully I have had the community at Feeding Tube Awareness to ask questions to and get advice. They have been so much help! 

Another big challenge for us is time. Our society is go, go, go and Jillian’s schedule is very similar. I lost count of the amount of doctors visits she had last year. The amount is crazy. She had 185 insurance claims from medical visits from last year.  While some of those claims are duplicates from the same visit (a hospital room change and a doctor charge), the number is still up there. Some weeks I feel like we just run around crazy with appointments. Add that to Brent and I both working 40 hours a week and life can get a little crazy around here. I am grateful for every second I do get to spend with her. Some of our best times have been spent in doctors’ offices or in the hospital because all of our focus is on her there. We take the time that we get. We are fortunate for any time we get with her.

Some points of this year have been very emotionally draining. One of the hardest things I have ever done is handing my baby over to surgeons, watching them walk though double doors that I could not go through, and then having to walk the other direction. We did that three times this year with Jillian going into the operating room and a few other times with her going into interventional radiology.  That is the most helpless feeling. Little sleep and a lot of medical stuff mixed with vomit and stomach bile makes for a worn out momma some days. I see how food hurts her, but is vitally necessary for her to live. I see how she needs to learn oral skills but yet vomits when she eats.  It drains every part of me when we do food trials to see if maybe her stomach is working properly at that point in time. They are so stressful because she is ends up in so much pain. It is hard to see a child want to eat, but not be able to. However, thought all of it God has brought us though. I have had to rely on Him this year like never before. I have been pushed to new levels, and thought deeper, and cried to Him more. I am fortunate that I had a relationship with God before this because I know this journey would have been so different otherwise. My prayer life has grown and been stretched in so many ways. I have never thought about prayer as much as I have this year. It is amazing to look back and see God’s hand in all of this.

Another major thing that has made this journey easier is the people who have lifted us up though it all. There have been so many people that have come along side of us and prayed for us, and said encouraging words. There have been people that we did not know before, or have a strong relationship with, that now keep up with Jillian and are great support. This year has shown us who has our backs, and who cares about us, and who loves us like no time before. It is easy to be someone’s friend when their world is normal, however it means a lot more to come along side them when things get interesting. Sickness brings out the best and worst in people and that has rung true this year. We are so thankful for every kind word, random email, and sweet gesture. I can’t begin to tell you what they have meant to us. There are not words to describe it.

I want to take time to thank a couple of people who have gone above and beyond for us this year. First, some of our family has done more then we could imagine this year for us. I want to thank my daddy for always having that hug ready when his little girl needs it. For my mom, who talks to me almost every day. She joins me at doctor’s appointments and holds me when I cry. I vividly remember the late night once sitting next to the fish tank at Children’s as she listened and talked me though how we were going to make this all work. To Dan who has moved into our home and become an extra member of our family. He knows how to do all of the stuff that we do for Jilli. When he moved in he said he was staying for a month, and over 6 months later he is still here. We are so grateful for how helpful he has been and while people thought we were crazy taking an extra person in, it was one of the best things we could have done. To Jaime and Jason for our weekly meals. They might range from deeply spiritual, to beyond ridiculous, but they are always just what we need. You love our little girl so much and that love just flows out of you onto her. To everyone who prays for us, thank you. For everyone loves our little girl and is walking with us on our journey, thank you. We continually thank God for you. 

Here are some pics from today. She was not a big fan, and I look like a disaster. This is what happens when the feeding pump wakes you up and not your alarm. 

Jilli and daddy selfie this morning before school