Wow! It has been a long time since we have posted an update! Life has been super busy with my new job and Brianna is always running around doing something for Shirley.

It has been a very interesting past few months for Shirley. As many of you know Shirley is a very poor feeder. She would drink an ounce or so from the bottle and on a really great day she would drink two…

NG

As time went on we just settled into life with a NG tube. Shirley wasn’t pulling them out as much and replacing them once a week rather than three or four times a week wasn’t that bad. Shirley’s reflux has calmed down dramatically over the last few months but she still didn’t really like to bottle feed. Sometime back in June, I believe, we began seeing a new doctor concerning Shirley’s feeding. The GI doctor was added on top of the PT, OT, and Nutritionist. We tried a bunch of different things including every bottle known to man. Shirley just didn’t want anything to do with them.

GI

We originally saw the GI doctor to get the ball rolling on the G-tube but she convinced us that it was not the best option for Shirley and that we should exhaust all of our resources before electing for a surgery. She was pretty convincing and we believed that Shirley could wean from the tube, but the last 6 months have been the same thing over and over. We try something new and give it time to start working and it never does. Shirley is just a stubborn little girl. About two months ago now we decided that surgery to have a G-tube placed was the best option. Surgery is now scheduled for this Thursday, December 7th. Brianna’s birthday is December 6th. It’s not really what she wanted for her birthday I don’t think. We met with her surgeon about two weeks ago and discussed the surgery’s risks and rewards. I was against the surgery for the longest time, for a lot of reasons, but mostly because of the risks. I don’t like the 2 or 3% chance of having complications. I don’t want to think about infections or side effects. I really wasn’t thinking much about Brianna and Shirley though. Brianna totes little Shirley around every day, pumps, attempts to bottle feed, attempts to breastfeed, and then resorts to tube feeding. It is non-stop for those two every day. Thankfully Brianna is a trooper but her and Shirley’s day literally revolves around feeding and often the lack there of. It is also not that good for Shirley to have a tube in her nose that runs down the back of her throat all the way to her stomach. One thing that sucks about it is that it holds her esophageal sphincter open making reflux more of an issue. It is also extremely irritating to have in her throat. She is probably used to it by now but the tube pretty much just moves side to side in her throat and stomach all day. It makes her gag reflex more sensitive as well adding to her spitting up those precious ounces of breast milk Brianna works so hard for. Lastly there is some concern that the tube affects her developmentally as fas as speech. It really is time for a change. I might be writing this just to convince myself.

Changes

We have tried two separate times to wean Shirley from the tube and she made it very difficult. The first time we tried the tube was out during the day and Shirley would pretty much go on hunger strikes taking at most 6oz the entire day. The day she took 6oz we were very excited even though it is only a 1/4 of what she needs to be healthy. We would put the tube in before bed and feed her straight water over night to ensure she was hydrated and then the tube would come out again. We only made it 2.5 days before realizing she wasn’t going to be able to wean. Our GI doctor even prescribed some medication to help her stomach empty faster and there was no change. I’m not a big drug guy but I would rather Shirley be on a drug than go under the knife for something. We made one final trip to the GI doctor last week and she wanted to try one last medication before the surgery. I almost laughed at her. We were exactly 10 days out from surgery and she is prescribing something new. We said we would try it though. Shirley pulled her tube out on Friday this last week so we said we would go the entire day and see what she could do. On her first feed she took 4oz from the bottle in under 30 minutes! We were shocked! Then she took 2oz her next feed and by the end of the night she had taken 17oz by mouth. We couldn’t believe it! Not wanting to get our hopes up we said that we would go another day and see what she ate on Saturday. Well much to our surprise she took 18oz by mouth yesterday and today she is on track to beat that. As of right now we are considering calling the doctors tomorrow to have them postpone her G-tube placement. Shirley has been tubeless for three days now!!!

We would appreciate your prayers over the next few days. Brianna and I want to make sure we are making the best decisions for Shirley and her health and we really would love not to have to go through another surgery no matter how minor it may be.

In other news, Shirley got to meet the doctor that broke the news to us that there was something wrong with her poor heart. Dr. McMahon was a huge blessing to us during that very difficult time. From the very beginning she told us that God had plans for Shirley’s life and that she was beautiful and special. We believed those things as well but we didn’t expect it from the random, on-call, doctor that day. She took us under her wing immediately and told Brianna without hesitation that she would now be her primary physician. We got a photo of Shirley and Dr. McMahon the first time they met just about two weeks ago. I’ll put the photo in here. 

Shirley was also on the news again just before Thanksgiving and I’ll attach that here as well. 

Thank you everyone who has been following Shirley and praying for her and our family. We appreciate all the support. Shirley Anne is a beautiful reminder of how blessed we are to have such a wonderful community of people in our lives. I can’t imagine what it would have been like without your support.

-Joseph