So I've been quiet for a little bit and it's because I've been struggling. We were placed on a new medication to help the Peanugga tolerate tummy (G) feeds better in hopes of less vomit and progress and it has been great. Too bad in the middle of it when we caught that first hopeful glimpse of coming off the J feeds she ended up throwing up while sleeping which startled her and she gasped right in the middle of it which resulted in our first encounter with aspiration pneumonia. When you hear "aspiration" anything it results in this unbelievable fear that our feeding issues may multiply. We've had therapists and doctor's in the past question how we've never dealt with this before with the massive amounts of vomit we have dealt with and all the major GERD/reflux issues. I'm not sure how we haven't but I'm very thankful that we didn't and I'm praying really hard that it was a total fluke one time incident. After the pneumonia we had a few really good days and got out to enjoy some nice weather and she ended up sick again.....allergies? maybe? The runny nose, coughing and congestion has made us stop all tummy feeds for an entire week because they all result in vomit. The vomit causes horrible stress for me...it causes weight worries, aspiration worries....It also causes me heartache and fear....for the first time in well over a year I finally caught a glimpse of what it would be like to have all tummy feeds and no more night feeds and it seems as quickly as I finally acknowledged that hope the whole thing blew up in my face. I can't even put into words how that makes me feel and add to it that we finally had her taking some foods by mouth and all of that stops too when the vomit starts....one step forward two steps back.....:(
On top of all of the "normal" Peanugga stuff in our lives we are getting ready for my son to graduate tomorrow. I never in a million years thought I'd be the boohoo mama but apparently that is exactly what I have turned in to. I am so incredibly proud of him and the young man he has turned out to be. He has had to grow up way too fast with all the unexpected events in our lives. It seems like if I blink my eyes it was just yesterday that it was him I was watching play on the floor and now he's all grown up. He is amazing to watch with Madilyn. I think her Uncle Thomas is her favorite person ever....they have a bond that I can't explain but when you see him with her it makes you tear up. Thankfully we have lots of family help with Madilyn so his graduation can be all about him.
There have been way too many times in the past two and a half years that my children and husband have voluntarily taken a backseat on my priority list in order for me to take care of Madilyn. They have never complained and for that I am thankful but it does not ease my own self-inflicted guilt that at times with all the travel and extended stays in Milwaukee that I feel my children are growing up without a mother. I am very thankful to all of their friends mother's that have stepped in as surrogates and cheered them on at their sporting events when I could not be there and have opened their hearts and homes to my children where they could escape and just be normal for a little while. Without you other mom's and dad's that have done this for my children they wouldn't be a wonderful as they are and you deserve that acknowledgement and my gratitude. I do find lately though that along with that gratitude comes some feeling of jealousy for all of the things that I have missed out on with them in my place.
I think it's time for me to invest in some pink shoes of my own for walking.....and to hold on to my hopes and dreams no matter how many road blocks and detours may be in the way.....after all, it's all about the pink shoes...
