Monday, August 16, 2010

The G button decision

So the time has come, we have decided to get the G button. Mike, and I have tried as long as we can to get Jude to eat normally. Jude had problems eating with me yesterday. He ate about 5 ounces at 10am, and didn't eat again until after 7:30 pm. That is just not enough! Mike called me earlier while I was working just exasperated, and said he thinks it's time to get the button. Honestly, when I heard him say that I just made up my mind that this is it, it's time. I went into action mode. I called the nurse to see what we need to do to extend her to full time to care for Jude after the surgery, and I then emailed my boss letting him know I will need some time off. Mike's job was to call the GI specialist to schedule the surgery. I have no idea if he has called him yet, but I doubt it. I know in the end this decision will benefit Jude, but it still makes us feel like we are giving up.

Mike is having a very hard time, and it's honestly it's wearing on our marriage. I am doing my very best to help him cope with everything, but there is only so much I can do. He now feels like a failure, and that nothing ever goes his way because of the G button. I understand his reasoning. It's not the G button itself, we know that will ease our life some, it's just the fact it's another step. It's Mike accepting the fact his son will never be more than a baby. We can hope, but there comes a point to where you do have to accept some realization. Mike was questioning why we had Jude this morning, but I told him we can never look back, and we need to appreciate Jude for who he is. I am unsure when we will schedule the surgery, but it will be pretty soon. I would like to wait until after Jude's birthday, but I am not sure we will. So we will be trained on how to properly care for Jude's tube. We will also continue with speech therapy to try, and get Jude to eat normally in the future.

I have requested some time off work in February. Our good friend gave us some airline passes, and Mike, and I are going to get away. I think we need the break from everything, and just some time to ourselves. Making a marriage last takes work, and especially when you have other issues affecting your everyday life. Honestly, I am pretty much a go with the flow type of person. I will do what I can to try and see the positive in every situation. Mike tends to get frustrated with me because I do that, but I just hate being negative. It's no way to live your life. Now don't get me wrong there are days where I don't want to answer a text, or a call, or anything because I am busy, and just overwhelmed. Days where I want to be happy for everyone elses good news, babies, and more, but I can't. Days where people's uplifting words of encouragement don't help. It happens, it's rare but it happens! By the way, this is one of those days.


Shannon said...

So many parents feel defeatedwhen it comes to getting the gtube. That's such a normal feeling and it's understandable, I have talked to countless parents about it ahead of time and followed up with them later to hear how happy they are with that decision, I am sure you will be the same way. We put it off for month (Dylan had an OG tube when she came home from the NICU, it took nearly 6 months for us to 'give in'.)

We found that feeding Dylan becomes less of a 'chore' to us after she got her button. All of a sudden we had time to relax, time to be patient, time to take a moment and make a positive effort. There's just too much pressure on both you and your child when you know what goes in their mouth is their only source of nutrition. Consider the button a back up plan.

Good luck, hang in there, and let us all know how it goes.

Docia said...

I know this is a difficult decision, I want you to know that I will devote what ever time I can to help you through this process, I also want to know all about the gtube so I can continue to care for Jude when you need a break and I am with him, this is NOT a failure, this is a step in coping and I support this and all your decisions.

jocalyn said...

i so second what shannon said. it makes things so much easier. and definitely just use it as a backup plan!

i can relate to the defeat though. i sat in the bathroom at the hospital when kendall went in for surgery and cried hysterically for about 45 minutes.

now things are so much better.

the g-button is super easy to do, you'll have the hang of it in no time.

if you need a great surgeon let me know. also, if you want any tips on specific types of buttons, i feel like we learned the hard way which was best...but we finally have a good one. i can also try to help with home health places to deliver supplies. i've dealt with several in the area...

you'll also be amazed at how much more he advances developmentally when he has proper nutrition and fluid intake!

also, you don't have to go through your gi dr. for the button. we went through neurology, and didn't add gi until we had reflux issues.

one more piece of unsolicited advice...say no to the fundo :)

hang in there.

Katy said...

Can I just add a "hell yeah" to everything that Jocalyn just said? All of it. I completely agree.

Finding the best option for feeding your child is not defeat--it's life. There are kids that need feeding tubes because they have so many food allergies.

Mike will feel so much relief I am sure. And you guys deserve a break. Good for you.

Jamie said...

I totally agree with Shannon and Jocalyn! I felt so defeated when we finally agreed to the tube. I never wanted that to be how things went for my daughter. But then we got the tube and things got so much better. Anna started really making more progress. Her speech therapist couldn't believe it. There were some rough days at first trying to adjust to everything but the food struggle, it was gone, and we all felt so much relief. In time, you will learn the tube and you will learn to love it because it will help you and Jude to have more time for other things and less time spent struggling to try to get enough calories down to keep him healthy. I also second the no to the fundo. We almost ended up with it a few different times but were able to not get it and I am so glad! Hang in there and keep us posted!

Christy said...

MaKayla has had her Mickey Button since she was 3 months old and it has truly been a lifesaver! It is very simple to use and care fo after you are accustomed to it. There is no reason to feel like a failure, this is a win or lose situation this is to do what is best for your child and that is all that any of us can do. Hugs and Love!

Candace said...

Jen I know it is so scary. You know how much we love faiths button! We are here for ya girl

Anonymous said...

I also have a special needs child, and have had many days like your Monday. I try to be positive most of the time. My daughter is 16 years old now. I can tell you life was hard the first few years, we were in the hospital for some issue,every holiday. However, life is better now. With time comes a greater acceptance. My daughter has outgrown her seizures now, no seizures for 4 years. She does continue to take seizure meds. I am not going to offer any opinion or cliche' to explain why we special needs parents are given the circumstances we are given. Sometimes those do get old. I can tell you though, I found your blog on one of my "Mondays", and it has helped me tremendously. I feel less alone in the world now thanks to your blog, and that is thanks to you and your precious Jude. You both have made a difference in my life. OK, maybe one cliche' here. This has helped me on many of my darkest days. "If one person in this world rests easier because you were here,your life has truly been successful. Tnank you and thank Jude for making a difference in my life and the life of my daughter. God bless.

Debbie said...

g-tube feeding has been a part of our lives since Hudson was 7 mo. old. I didn't have a chance to feel any of what you are simply had to be done for survival. I do know any parent that has had to make the decision hasn't regretted it. It should eliminate a huge stressor and that is important.
God willing Jude makes progress orally you always have the option of removing it and it closes up like a earing hole ( that is what I have been told)

I also want to thank you for being so honest about the toll having a sn child takes on a marriage.
It is our marriages that really deserve the extra kuddos for sticking it out, and sticking together...a true testamint of what marriage is all about!

Bronx Cataldo's said...

You know my Mom was so against the g-tube for Finnian. Until one day she watched me trying so hard to get Finnian to eat. I had ended up feeding him with a syringe and in and hour I had gotten 2oz into him. On a good day he would inhale 6-8oz no problem. She just handed me the phone and told me to call what ever doctor I needed to get the g=tube done. Because it wasn't fair to Finnian and it wasn't fair to my 6 year old and my 3 year old that I had to spend so much time trying to get him to eat and for my sanity it was the right decision. On good days he sucked a bottle and on a bad day I was still able to get food into him.
For Jude even if you only use it to give him his meds and the days he doesn't want to eat it is a sanity saver.