Adjusting once more

 

My thoughts and emotions are all over the place. I am actually finding it difficult to put into words the various feelings I have swirling around inside of me. We are beyond grateful and humbled by the support and generosity toward the shirts developed for Team Bridget! I’ll be honest, I actually cried seeing the first Snapchat of a friend receiving hers in the mail. When the idea was brought to us by my sister-in-law (Michael’s sister, Megan), we were initially not sure if we would move forward with the idea. We don’t like to draw too much attention to ourselves with everything going on with Bridget, and pride ourselves on learning along the way and adapting to her changing needs. But this idea was so thoughtful and something we knew we could cherish forever. 

When the day came to receive and hand out the shirts, I had staggering feelings wash over me. Typically, I feel like purchasing a bracelet or a T-shirt in support might lead toward growth, progress, or maybe even good news. I suddenly had the realization that none of those things would ever be happening upon people receiving their shirts. It is devastating to know that we are all rooting for this sweet, innocent, and pure little lady…yet there’s no hope for any grand miracle. The feeling was so ‘final’…if that makes sense. 

I also feel like I’m constantly saying the same things over and over again. Just when we feel like we have things figured out, more life-altering road blacks are smashed in our way. A big thing that we have to watch for now is food intolerance. As Bridget declines (and will continue to regress), we have to keep a close eye on her formula feeds (which is her only source of food or nutrition now). Everything is administered through her g-tube. 

With her organs slowly shutting down and not working correctly, we have to be observant of changes as we feed her. We started to take notice that her bowels weren’t as active and put into place a regimen to help with that and “keep her moving”. Last week I though she might be constipated again, and noticed that her g-tube was starting to leak quite a bit of formula out of it throughout the day. We tried to problem-solve, and finally came to the conclusion with our hospice team that Bridget’s body and gut aren’t able to digest her food properly anymore, causing anything we put into her belly to just sit there. Instead of continuing to just repeatedly place more formula into her belly, we had to make some changes. We already decreased her calorie intake. We were hopefully that this would help, but after doing more monitoring, we had to decrease her feeds again.

I cannot even express the raw emotions that drowned me while hearing about the “next steps” and decisions that we need to make for Bridget. No parent should EVER have to make such heavy and heart wrenching decisions in regards to their child. With a few options at hand: lessen the feeds and move toward a continuous feeding pump (a pump that will be connected to her at all times to slow the rate of food so that her body might be able to tolerate it, go in for a J-tube surgery knowing that she would most likely have more major regressions post-surgery if she was even able to make it through it, or stopping feeds all together and keeping her comfortable. Our hospice nurse not only takes incredible care of Bridget, but when she tightly gripped my hand during the announcement of our options, I crumbled. This team truly has become angels for all of us. 

We want to make sure that we do everything possible for Bridget, while also taking into consideration her quality of life. Once feeds become “too much” for her body, we will have to reassess our decisions again. For now the decreases to her feeding routine that we have made will hopefully buy us some time. It’s is awful knowing that most likely she will begin losing weight, and also quite difficult to know that she will be more lethargic and sleepy than she already is. With Sanfilippo, there really isn’t any glimmers or hope. Sanfilippo has ravaged our family, and we will never be the same. 

I am also really having to give myself grace during this season of life. Michael and I are both individuals who want to help others, be a source of joy, and not let anyone down. I have been wrestling with feelings of guilt as I know that more and more of my mind and heart are removed from other areas of my life while we deal and cope. 

A couple of positives would be that we are truly surrounded by so many amazing people who support Bridget and our needs daily. Michael and I both aren’t the best about sharing what is going on with Bridget. I can speak for myself when I say that it is hard to put that out there knowing that we don’t want any sympathy, and we know that it is typically always depressing news to share (who wants to hear that)! But we are grateful for the check ins, the prayers, the notes, etc. 

Another positive was that we were contacted from Blank Hospital about a tree from the Festival of Trees and Lights that was being donated to Bridget. We cannot even express the sheer joy we had knowing that Bridget would be able to gaze at the lights every night (which has ALWAYS been one of her favorite things). Bridget’s hospice team were the ones who chose to donate the tree to her, and now she has 2 trees upstairs that she can look at which gives us peace, because that is one of the only “activities” she participates in anymore these days. 

Another huge thing for us was Michael’s uncle and a friend building us a ramp inside of our garage to bring Bridget inside with her wheelchair. Because she’s 10, the lifting can become quite challenging and this will be an awesome way to SAFELY transfer her inside and outside to the bus or vehicle. 

Thank you for all of the well wishes. I know this is a tough read, it was equally as hard to write. Keep our little girl in your thoughts and prayers please.