The post you have all been waiting for has arrived. Monday we left for Milwaukee to get settled in to the Ronald McDonald House for our stay during Avelines appointments. First, let me just say that if you don’t now about this organization you need to check it out, they are amazing, and doing some seriously incredible things for families that are having some rough days. It allows for you to escape and feel at home when across the street your world is chaotic and stressful with appointments, doctors, testing, poking, prodding, xrays, surgeries, therapies, etc, etc. They offer an outlet, a little escape, and a way to connect with other families that are struggling in their own way with a whole variety of scary and stressful things with their children. That being said, if you can donate your time or money to this organization I would highly recommend it. If you have soda tabs, or want to collect them and get them to me, I can donate them for you as well! Every little bit helps, and from what we have now seen and experienced, it is a well deserving organization! (Not a sales pitch, just where our hearts are right now).

Now, getting down to it… on Tuesday morning Aveline had a swallow study. We took her into an x-ray room, and they put some contrast on her food and drink, then took xray videos and photos of her eating and drinking. In this study they found that she is aspirating (fluid is going into her lungs as she drinks at times). Later That day we had an esophagram, which they give her barium (a contrast), and instead of video x-ray of Her mouth and swallowing, they focus on the lower part of her esophagus. That test was the hardest, lots of tears and upset, she did not drink the contrast well.

After that is was naptime. Afterward we went to the big super target and grabbed a bite to eat at a little mom and pop diner. Headed back to the Ronald McDonald House and the girls got to play in the play room for awhile, then we did some art therapy and we all colored and painted some drawings. Just before bed one of the therapy dogs, Sydney came and we all enjoyed cuddling with her for a little while.

Day 2, we got up entirely too early, the girls both got baths and we ate (minus Aveline, morning 2 of fasting), played in the game room and play room bunches and made our way back to the hospital. We had a three hour visit with the feeding team, they watched her eat a meal, nurse, weighed before and after she nursed, answered a lot A LOT of questions. Then they had a private meeting and discussed their findings and a plan for her. The doctors came back and asked some more questions and then shared their findings with us. Long story short, she will be seeing neurology next month to assess if there is something underlying that may have been caused during her somewhat traumatic birth.

They also had concern that eating is causing her discomfort, so she will also have an endoscopy done as well. They will put her under anesthesia and run a scope down her throat to look for irritations and lesions. With that procedure it was determined that it would be in her best interest to insert a gastronomy tube (g-tube), which is a feeding tube into her belly.

Unfortunately, my breastmilk is her main food supply at this time, and we are on the brink of it not being able to fully sustain her much longer. She nurses and average of 17 times a day and gets approximately an ounce each feeding. We all believe that this will be the best option to help her thrive and be able to focus on the other underlying issues to strengthen and help her so that she can learn to eat and drink and speak normally. So yes, still many unknowns, but a plan to begin helping her get what she needs so that she can develop properly and be the very best little girl she can be.

We are very confident that she is in amazing hands with the specialists she is seeing, and what the plan is for our little girl.

And in the end, the beginning and through all of it….

GOD’S GOT THIS!!!