green light means go!

Happy Dance… ok weird happy dance! I know most people would not do a happy dance when the word surgery was mention but we are and let me explain:

Jillian had an appointment with her GI doctor at Children’s today. She is up to 17lb 9oz! She gained about 18 grams a day and the goal is 15 so she is exceeding the goal! They gave us guidelines of how to adjust tube feedings when she takes milk by mouth. If she takes in 30ml in a day we can cut out 1 hour of tube time.

By mouth, we are going back to her only giving her 15ml at a time. This will hopefully drop down the puking and screaming. She can have two 15ml bottles a day. They still want us to do one of those bottles 3 hours after the pump is turned off. The point of bottle feeding currently is to keep up sucking coordination and not for nutrition. The doctor had thought about upping mouth feeds until I explained how the last two weeks have gone and then she decided we needed to back off. We are very relieved by this because the last two weeks have been really hard at times. 

We then talked about the plan going forward. Jillian has had a tube in her nose since March. There are challenges with the tube in the nose. One of them Jillian has dealt with and that is increased sinus issues. The nose and sinuses are not meant to have a tube in them, and especially not for very long. Jillian has mastered pulling all of the tape off of her face and has patches of skin that come open from the amount of tape we have to use.

The tube has been a life saver for Jillian and we are so grateful. We are currently no closer to her being without the tube then the day she went on it. With that in mind and the challenges that the NJ tube has as a medical team we have decided that it would be best for Jillian to have surgery to have a GJ tube placed. The tube will now go directly into her stomach instead of in her nose. (Here is a link to info about the surgery: http://www.feedingtubeawareness.com/surgery-docs-hospitalizations.html )

Someone will be calling me within the next week to schedule the surgery. The surgery will be done with her GJ doctor and a pediatric surgeon. When they do the surgery they will also be doing an endoscopy at the same time to look at her esophagus and take some biopsies of her throat. After the endoscopy part is over she will get the tube placed. She will have a PEG tube which has tubing that sticks out of her belly. After surgery is done she will go to interventional radiology and have the tube in her belly extended into her intestines. We will then spend the night in the hospital. There is a chance she will not be able to see the radiologist to extend the tube until the morning after the surgery depending on scheduling. If all goes as planned we should be in the hospital less than 24 hours.

The clinic today gave me a nice binder with all sorts of info about the tube. It is filled with so much information! The nurse said that I was lucky because Jillian has had the tube for so long now that getting this new tube won’t be too different.  Many people have told us that having the tube in the tummy is much easier.

Birth to 3 was going to come out today to do their initial eval but we had to cancel with them to go to the appointment. I have called them a few times and left voice mails to see when they want to reschedule but I have not heard anything back yet.

Yesterday Jillian got another shot. She did not care that a nurse stuck a needle in her leg, she just kept planning with her doll. I’m glad she does not scream with shots but I wonder a little why she does not even seem to notice them… 

After her doctor’s appointment, we went to Starbucks and the mall. Jillian and I rewarded ourselves for a successful doctor’s appointments with new clothes. We both had giftcards to spend from Christmas. I got myself some smaller clothes and got her some bigger clothes lol! Thank you to the people who provided us with the gift cards. It was so nice J

Today Jillian and I are cuddling. She seams extra sleepy today, which I am guessing is a side effect of the shot. She also has a runny nose a cough, which she also gets after having a shot. Tomorrow we are hoping to get her 6 month photos done.  I want to get professional pictures done before her tube is moved since a tube on her face has been such a

. big part of her life so far.