A Letter

I found a really helpful website lately and it contained a letter you could provide to family and friends. It addresses many of the things Jared and I experience with Noah so I thought I would share portions of the letter. I have added some thoughts about Noah in brackets. You can view the full letter and other information on the following website:

http://www.feedingtubeawareness.com/Family.html

Thanks for taking the time to visit our blog and sharing in our journey with Noah's feeding. MERRY CHRISTMAS from the Dykstras. Hugs!


Dear Friends and Family,

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do (Noah is very sensitive about his g-tube site and also touching his nose and face at times).

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many tubie kids do not look sick. (That is absolutely Noah - we have no known diagnosis). However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy.

Here are some things we would like you to know:

Getting child care for a tube fed child is very difficult

It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Even those of us with family nearby may not have family members who are willing or able to learn (We have been very fortunate to have many offers for help, as well as 3 wonderful respite workers that we have trained. Oma is also a very willing tube feeder and was so brave to do several NG changes when I needed the help).

If we are going out we need to plan in advance

We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans. (Thank you for our many friends who welcome Noah with open arms. We've done many feeds at other peoples' homes and we feel so blessed. Terri even had a hook in her living room back in the gravity feeding days).

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can't be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. (Our restaurant experiences have not gone well; we try to avoid this if at all possible).

We are tired

There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. Kids with reflux aren't always the best sleepers. We investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. (We are doing better in the sleep department lately but do respond to every sound Noah makes).

We can also be emotionally drained

It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. I am not sure my own family understood how stressful this was for me. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong.

Our level of empathy may have changed

We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn't have to see. Many of us shouldn't have seen our kids intubated and connected to so many wires you aren't sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications. We have had to hand our kids over to surgeons. (Over the last year we have repeatedly held Noah down for procedures, subjected him to invasive testing and it has taken a toll on all of us).

We don't expect sympathy or necessarily want sympathy from you

We love when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don't particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job. (If you don't know what to say, that is okay too. Sometimes that is better than saying something well-meaning but misplaced. We understand the need to see progress in Noah's feeding, but Jared and I have come to a place where we accept that tube feeding is part of our lives and will remain that way indefinitely. When we share our difficulties, it is simply to be honest about our experience, not to make someone feel badly for us).

It may seem silly to you, but it might be cause for celebration for us if our kids eats even a small amount

A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube. (Noah is not taking any calories by mouth right now so our celebrations in oral feeding are few and far between).

Some of our kids receive government related benefits. It is because any child on a feeding tube is legally disabled and they are entitled to certain services. Please don't think we are milking the system or are lazy.
Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them. Some medical supplies aren't covered by insurance at all. Moreover, many tubie families have to have at least one parent who is home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. (We are very thankful for the disability assistance provided to us for now and find it a necessity to get out and recharge both separately and as a couple).

Please, please don't:

Feed any child something without the parents' permission. This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from their diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering.

Compare what a child with a medically complicated history to a perfectly normal child who has never had food hurt them.

We appreciate that your children or others in the family are wonderful eaters. We just want people to look at what our children can do and what they have overcome. If all you know is food hurts, it is a huge accomplishment to tolerate small amounts of food and have it not hurt.

Ask me when my child is coming off the tube!

The real answer is that a lot of tubie parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex.

Remind me of the "what ifs"

Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.

And most importantly, to keep our kids nourished, it is all worth it.

Thank you.