Bye Bye gtube

Now you see it......

NOW YOU DON'T!

It's official. No more feeding tube! Of course, Julia wouldn't be Julia if she didn't cause one last bit of drama. The doctor(s) told us 98% of g-tube holes close on their own but not for us. We waited several months but it didn't so she had surgery. Although all surgeries have some risk, it was an easy operation. It only took 30 minutes and with no complications or worries.

Thanks Bobbie (2008 recap)

I'm sure I no longer have any followers but Bobbie updated her blog so now I feel obligated :) I cannot say I'll keep it updated but I'll try.

Current stats: Weight: between 26.5 and 27.4 (depends on who's scale we use). Height: 37 1/2". Attitude: 100%

Hmmm, where to start?

Let's see. Obviously we finished the feeding program. It wasn't "all that" for us. The biggest thing we learned was being able to step back and compare how the therapist handles Julia during a feed vs. the way we do. It was an eye opening experience but I don't think it justified 4 weeks of inpatient treatment. The staff told us that one reason Julia wasn't as successful as other kiddos is because of her age. By age three, she's had plenty of time to develop bad habits. So, if anyone out there in blog-land is considering an inpatient program, my advice is to do it as early as you can.

June: we finally enrolled Julia in school. As expected, she was hysterical in the beginning but the teachers told us that for someone who'd never been in a daycare, she was doing well. She still doesn't like to be left in the morning but according to the teacher, she'll hold Julia for a few minutes and then she's good to go. School really has made a difference for her. And, I enrolled her in dance, a computer class, and Stretch and Grow (a exercise class).

July: Julia had been eating so well that we decided to quit using the button and see how she did.

November: We'd gone almost four years without RSV and sure enough it happened. You fellow preemie moms know the drill. Starts with something simple and goes down hill quickly. At first Julia had an ear infection. Round of antibiotics and all was good. Head congestion came next, followed by it moving into her chest. Back to the doctor and she put her on a pulse oximeter. She was in 90-93 range but with a breathing treatment, she was fine and we went home. That night it went to hell. The dry wheezing coughing, can't catch her breath, etc. After an entire night of breathing treatments and crying, we took her to the ER at 5a. Sure enough, she had RSV and we stayed in the hospital for five days. During that time, she lost three pounds. Like she had three pounds to spare.

January: Two big events. First, we took the Mic-key button out. We hadn't used it in six months so we felt there was no need to keep it in. Second, we moved Julia to pre-K. She seems to like it. I worried about the kids being so much bigger than her but I'll have to get over that because I'm sure that will be the case for a long time.

That's 2008 in a nutshell.

Never a good idea to have a pen within reach....

A couple of weeks ago, we bought a black lab puppy. Her name is Daisy and she's the cutest thing ever but also a total maniac. Julia thought she was the coolest thing ever......until.....we got her home and she tried to play with her. She's never been around a puppy and had NO idea what it was like. We've had to teach her how to act around Daisy. Don't run from her. Don't let her take your things. Push her away if she's bothering you. The first time Daisy chased her, Julia took off running and yelling "Take her back! Take her back!" The picture is one of Julia's first attempts at standing her ground. Didn't work out so well. A couple of pushes and then Daisy knocked her over. Instead of getting up, she curled up in a ball and yelled "I'm down! I'm down! Help, I'm down!"

What day is it?

The days have started to blend together. I can't remember how long we've been here. It seems like forever. Julia ended her stand-off and we started seeing a lot of progress. It lifted our spirits and we were certain the progress would continue. It all went down hill when it was our turn to feed Julia while the therapist watched. It's a beating. The fighting, crying, and cute comments have returned. What makes this whole thing especially hard is that we're being taught how to "remain neutral" and not engage with our cute monster. Sounds easy but let me tell you; it sucks. I don't know of any other way to describe it (without using curse words). Here's a couple of examples of what we're dealing with right now. Feel free to comment and let me know how you would feel if you were sitting in our shoes. I was feeding Julia breakfast yesterday and she's yelling, crying, and pushing the cup away. I was standing firm (while thinking of those colorful curse words) so she started pushing harder. By the end of our session she was pushing the cup so hard that I was literally covered with Pediasure. I'm ready to flip out and I'm considering choking her but I have a therapist sitting next to me saying "Remain neutral and ignore her behavior. Don't take the cup away." Suddenly, my thoughts of choking Julia turned to me choking the therapist. Dinner wasn't any easier. She cried hysterically and Darrin could do nothing but sit and watch her; oh yeah, and tried to remain neutral. Darrin and I have talked about packing up and taking Julia home but we won't because it's not in her best interest. Even though we'd love to home, it will be just as horrible when we get there. We have been assured she will try and revert back to her old ways but we can't give in.

I really don't know how much more we can take.

Day 11

After a 2 1/2 day stand off, Julia finally started taking bites. Literally a bite here and a bite there but at least she was giving in. Yesterday was an awesome feeding day. From breakfast to dinner, I bet she ate 5oz.


We started observing Julia behind a 2-way window during her meals. Her behavior was typical but it didn't last nearly as long as it would here at home. For the most part, the therapists feed her the way we did; minus our ability to get sucked into Julia's games. The biggest difference is that the therapists remain neutral when responding to her. They're patient, use a neutral voice and unless Julia is taking her bites or playing with her reward, and they ignore her comments. That's where we went wrong - ignoring her comments. If she said "I love you, mommy" I would say "I love you, too so lets take a bite." The therapists pointed out that even though it sounds like Julia is being all nice and sweet, she has the upper hand because she's found a way to postpone taking the bite. Makes sense but it's easier said then done. Monday, we begin sitting in the room with Julia and the therapist. Should be interesting.


Miss Social Butterfly has made lots of friends and we've gotten to know many of the parents. Some of their stories are so heart breaking. A few doors down from us is a 3 year old boy who has severe brain damage because he aspirated on a grape. Prior to the incident, he was a healthy, happy, hyper kid. Now he can't move on his own and has no facial expression; just a blank, distant stare. Another cute little girl is there for rehabilitation after brain surgery. She had such severe seizures that the doctors felt surgery was the best route. She's been seizure free for a month but she still takes massive amounts of seizure medications. I'm very thankful that the gtube is our only issue.

Day 3

We checked into the inpatient facility on Tuesday. Horrible day for me. I cried....and cried....and cried. Woke up crying. Cried while getting dressed and driving to the facility. I was able to regain composure by the time we walked in but the second I had to say we were there for inpatient therapy, I burst into tears again. It was awful. Julia is a different story. Wasn't phased in the least. She looked worried about my crying but she had no problem talking to people and checking things out.

On Tuesday, I fed her lunch and dinner. Wednesday was the first time we left for the day while the therapists worked with her. I was worried that Julia would be upset, cry, and be bored. Not the case. There were a few tears in the morning but after that she was fine. When the kids aren't in therapy, there is plenty for them to do. Yesterday, Julia and her friend Ellie played "beauty shop."

So far, Julia is holding strong. Not cooperating at all. Tuesday she ate fairly well but yesterday was a stand-off. She ate ONE bite the entire day. She's also trying out her best distractions to avoid eating. She says "Hey, I love you. You're so pretty. I like your hair. Can we wait a minute before I take a bite? I'm parched." Nothing she says or does amazes me.

Check-in date fast approaching

It's been quite a while since I've posted anything so it wouldn't surprise me if people quit checking Julia's blog. For those who still stop by, here's the latest plan of attack.

Since Julia has been in feeding therapy for two years and still has issues, we've decided to do the inpatient therapy program at Our Children's House. Its a huge commitment and frankly, I'm pretty nervous. I'm excited to start the program but in the back of my mind I am constantly thinking "what if.....what if?" What if we don't succeed? What if Julia never learns to chew properly? What if she can never gain weight without the gtube? What if we have to send her to school with the gtube? My husband says I'm neurotic for being like that. I'm the kind of person that needs a plan; a backup plan; and a back up to the backup plan. I have to know exactly what will happen and what the result should be. If that doesn't work then I always have an expected back up result. Ah, if life worked according to my outline/plans then all would be good.

So, about the program. It's 4-6 weeks and we have to LIVE at the facility. Julia is not allowed to leave at all but we can. They encourage the parents to take breaks and get out for a while. Julia will be assigned a nurse and a nurse aid so they will watch her while we take a breather. I've always been told the inpatient program is intense but I never understood why. Now I do. I was picturing the therapists holding Julia down, being aggressive, etc. but the intensiveness is really directed at the parents. It's a huge commitment. We are required to feed Julia five meals a day (breakfast, snack, lunch, snack, dinner) and in between meals, she'll have speech and occupational therapy. For 4-6 weeks, we are in training five times a day. Never a "day off." The program focuses on removing Julia from her familiar environment and literally retraining her and her behaviors. It's the same thing for us. We are starting from scratch. We toured the facility last week and I was pleasantly surprised. The psychologist told us that it's important for the facility to be kid-friendly and it is. They have lots of things for kids to do. TV and video room, play ground, library and indoor play rooms. Now for the things I don't like. Before I get to that, I'll start off with "I know the program isn't about providing comfort for parents but.....The rooms are small hospital rooms and not the huge delivery rooms that look like a hotel. Julia will sleep in a hospital bed and lucky us - we get to sleep on the vinyl fold down couch. That sounds bad but it gets worse. We might have to share a room. OK, that's bad but not the worst thing. What really freaks me out is that there are NO bathrooms in the rooms. There are two or three bathrooms we'll be sharing. Using the same bathroom and shower with a stranger creeps me out. Germ-city. That will take some getting use to. I try and stay focused on our goal. Oh, forgot to mention the steps of our feeding plan. Times are approximate.

Week 1: therapists feed Julia w/o us there
Week 2: therapists feed Julia and we watch from a 2-way mirror
Week 3: therapists feed Julia with us in the room
Week 4: We feed Julia with the therapist in the room
Week 5: We feed Julia while the therapist watches from the 2-way mirror

We check in on January 8th; Julia's birthday. What a birthday gift. Instead of having a birthday party, I'm planning a welcome home party. She's too young to realize she's missing out on a birthday party so why not wait and throw a big party when she comes home?

So, that's our scoop. I apologize if my post doesn't make sense or if I rambled on but I'm tired.