There is never a dull moment with Garrin. We went back up to the hospital last night to take up some more breast milk. Almost as soon as we walked in the door, Garrin started having clustered Brady episodes. He didn’t tolerate either of us holding him, and he continued to Brady over and over during the night. Before 3:00 am, the NNP ended up stretching his feeds back to an hour and a half, and his high flow was upped to 4 liters per minute, as his oxygen needs had increased as well. The one step forward, two steps back dance never gets easier, and of course we were extremely worried that Garrin was getting sick again. Thankfully, the changes seem to have appeased him. So far, the culprit is thought to be yesterday’s ambitious changes in Garrin’s respiratory support and feeds as well as reflux.
Because we had no idea what was causing Garrin’s latest decline, we both stayed at the hospital today to see the effects of the changes and speak with the doctor. The focus of changes for the remainder of the week will be geared towards eliminating the reflux and hopefully reducing the number of Brady episodes. The first step is to add a thickening gel to the breast milk Garrin receives, which will hopefully help keep the milk down in Garrin’s stomach. I learned today that often times babies do better with nipple and bottle feedings than they do with tube feedings because digestion begins with smell, and tube feedings completely bypass that step in the process. Here’s hoping that is true for Garrin, and that we can get him weaned down on respiratory support to low flow so he can be fed orally. Until then, it’s recreational breastfeed for us (there’s that silly term again 😂), and guess what?! We did it, and Garrin latched and “nursed” for a total of about 15 minutes today!! What an amazing sight it was to see my sweet little baby nurse himself to sleep. God is so good!!
After breakfast this morning, we into another mom that we have been visiting with over the last couple of months. Tomorrow, they will be withdrawing life support from their sweet little angel. After visiting with her, I felt so guilty for the way I handled the stress and anxiety last night as Garrin had Brady after Brady. My heart breaks for her and her husband, and talking with her really put things into perspective for me. Our journey has been long and extremely difficult at times, but we are still on it, and Garrin is stable, making progress towards his care goals. I ask you, friends and family, that you keep this family in your prayers as they go through with the most difficult decision a parent could have to make.
“Sometimes the hardest thing and the right thing are the same.” ~Anonymous