May 22, 2011

This can't be comfortable

This is how we found Annabelle tonight when we went in to cath her and set up her night feeding. That can't be good for the nose. Such a silly girl!

May 18, 2011

An update on life with a G-tube and life in general

I'm happy to report that life with a G-tube is not as horrible as I had feared. It's actually quite manageable and has truly been the answer to so many of our prayers. We are really very happy that she has it and she seems to be doing very well with it.

Here's a quick overview of how it all works. Every night she gets 360 ml (1 1/2 cans) of Pediasure through the tube. It's on a slow drip pump. She gets 40 ml per hour for 9 hours. She is still able to sleep on her belly (which she loves) and so far we haven't had any problems. She wakes happy and energetic and ready to start her day. It's amazing how much more energy she has. She was always a happy, energetic girl, but now she's more like the energizer bunny!

We offer her 2 meals a day - lunch and dinner as well as snacks. She also still nurses at nap and bedtime. We don't offer her breakfast as she is not hungry at all because of the overnight feeding. I was told that we will eventually cut back on the night feeding to reintroduce breakfast but for now they just want her to get the high calorie nourishment of the pediasure. She "typically" eats one of those meals very well and then picks at the other. She nibbles on snacks and drinks from a sippy/straw cup a little. Keep in mind that she is basically eating and drinking just like she did before except now she is actually getting nourishment through the tube. The other major difference is that meals are not a struggle at all anymore. I offer the food. I gently encourage her to eat it. There is no begging, pleading or crying from either of us and sadly that was a daily occurrence. We are teaching her to eat food because she wants it and is hungry and because she likes it. We are letting her self feed and become more independent while not having to stress the whole time wondering if anything actually made it into her mouth. I give her 1 can of Pediasure throughout the day (through the g-tube) to make up for the food she didn't eat. I also give her lots of water and her medicines through the tube. This has helped to flush her urine and keep her hydrated as well as has helped tremendously with her constipation.

I'll admit it was very overwhelming at first and we were so fearful that her button would get infected. However, once we got on a good schedule and were told by the GI Dr. and the surgeon that she was healing nicely things really started to fall into place. As a side note: I have combined her G-tube schedule with her cathing schedule. So now every time I cath her (every 3 hours - 6 times a day) I also give her water for hydration or pediasure for nourishment as well as any medicine that is due. I think it adds about 10-15 more minutes to the process but it's way better than trying to do it at a separate time. She is a typical kid and is not very interested in having her play time interrupted for feeding and diaper changes so combining it really is the best option. It's really working well now and feels like a real routine.

Here's a visual update of Annabelle from this last 2 weeks.

I love seeing her happily eat. Okay, so this was cake, of course she's going to be smile. She is also loving spaghetti right now. She has eaten it almost everyday since she got home.

Picture taken May 1st - 1 day after being released from the hospital

Here she is saying one of her favorite words "MEEEEEEEE". This pictures was taken just a few days after getting out of the hospital. She bounced back remarkably well.

Picture taken on May 3rd

Therapy is also still going VERY well. We are are there 3 days a week doing PT and OT. Yes, it's a lot and some days I wish we didn't have to go BUT check out this awesome doll house she gets to play with. What a lucky girl!

I could pout and wish our time was spent differently or I can be happy and focus on the fact that she's is getting stronger every day.

Pictures taken on May 9th

Annabelle loved going to Benjamin's T-ball games and she was clearly his biggest fan!

Picture taken on May 11th. Click HERE if you want to see more pictures of the kids at Benjamin's T-Ball game

Belle is very proud of her "button" - as she should be. It's a huge help to her and her development and we never want her to be ashamed about herself. It's pretty common to see Annabelle pull up her pant leg to show off her braces and now she is doing the same with her shirt. I think it's very cute to see.

Picture taken on May 12th. Click HERE if you want to see more of Annabelle and her "twin" brother Benjamin on the family blog.

She finally got her own walker about 2 weeks ago. It took FOREVER to arrive and then it was the wrong size but thankfully we now have the right one. She doesn't love it, but I'm guessing it will just take some time to get used to it. She mostly stands at it and dances or cries - depending on her mood. We did get her to walk a bit using it last weekend (on May 14th). We are quickly learning that she needs to be motivated to get moving - like all kids, I guess.

This was her motivation - Ozzy, our cat!

The kids just love him! He tolerates them.

It's been a busy 2 1/2 weeks since we got home from the hospital but it has been a good 2 1/2 weeks. We are very excited to see what the next 3-6 months has in store for her. Now that she is getting proper nutrition and hydration I am confident that life is only going to get better and better for our sweet girl.

We went to Spina Bifida clinic yesterday (May 17th) and thankfully we all agreed that she looks great - very happy and energetic and that there were no need to make any changes at this time. They too were excited to see how she will grow and progress over the next few months. They just said "keep doing what we are doing". It was a wonderfully positive and collaborative appointment. I arrived with such anxiety (I always do), but I left feeling positive, encouraged and validated. Sadly, that is a rarity after meeting with so many medical professionals. I am very thankful for the Spina Bifida team that is helping to take care of Annabelle! We return in 3 months to she Ortho and 6 months to see Rehab. We currently see a Urologist outside of clinic and we are having a few routine tests performed next month for him.

All is good over here and we are SO thankful for that!

May 5, 2011


Yep, that's what our girl has gained in just 1 week since getting her feeding tube!!!

1 POUND!!!!!

Here's a picture of me giving Annabelle her first G-tube feeding at the hospital last week. It's gotten easier each time and we are so very thankful she has it.

Thanks in big part to these little pricey cans our girl is getting stronger and growing each day.

Thankfully, she's also doing a bit of this each day.

I would be lying if I said that it's been totally easy this past week. It hasn't, but it is getting easier with each feeding. She's getting proper nourishment, staying hydrated and she seems happy - really what more could I ask for. Well, I could probably think of a few things but I will save that for another post.

Sorry it took a full week for me to update everyone on Annabelle. Once we left the hospital on Saturday it was sort of a roller coaster of emotions for a few days and then we moved full force back into regular life. She really is doing GREAT. She's back to her happy self and really doesn't seem bothered at all by her new button. I haven't been able to get a good picture (translation - blog worthy picture) of it but hope to soon.

For those that aren't on FaceBook I wanted to repost this adorable (if I do say so myself) video I took of Annabelle last Saturday while we were waiting to be discharged. It speaks volumes to how well she bounces back after surgery.

I hope my girl makes you smile. Thanks for checking in on us.