We also had a procedure done yesterday where they put some contrast (dye) into his distal stoma (the part of his bowel sticking out of his belly that leads to his butt) to make sure that it was all clear, and it was! The next step will be to meet with the surgeon at the end of the month to [hopefully] schedule surgery. We are so very much looking forward to putting this past us and moving forward with our lives.
Everything revolves around this stupid ostomy. It takes 2 people to change it, and its unpredictable when or if it will leak, so leaving the house has become a challenge. If we do, we can't go far because we have to be able to return at a moments notice.
Martin's mom (Meme) left this afternoon. She's been with us since the twins were born and it has been a lifesaver. I truly do not know what we would have done without her. Unfortunately, because we haven't had the surgery yet, we needed to set up a schedule to have an extra helper in the house so that there are always two of us here to change the bag when it does leak. Martin is working in the basement today and tomorrow. My sister will be in town for the weekend. My dad is coming next week. The following week Martin will be working from home again. That will certainly be a challenge as it will be the first week that I am really home alone with the three kids. Martin's only available to us if we need a bag change (or if another crisis arises). After that, his parents will be back for a few days before they head up to Chicago, at which time Martin will work from home again. Starting the first full week of June, Meme will be back until my mom can come out on June 22. God-willing, the surgery will be behind us by that point, and Gaga (my mom) will just be here to help out with day to day things and won't need to be certified in ostomy changing.
When Drew has the next surgery, he will be in the hospital for a minimum of 2 weeks. Poor guy already spent a month in there, and now that we've adjusted to life at home its definitely going to be hard to take him back. We will sit vigil with him again, working out a schedule so that someone is there 24hrs a day. Hes just getting to the point of recognizing people - looking in your eyes, smelling mom, the comfort of dad's swaddle after the midnight feeding - and we don't want him to lose that. Hopefully (hopefully!) the surgery will go smoothly and we will be in and out (in two weeks) and just not have to deal with that anymore. He will inevitably be in the hospital at other points throughout his life, but mostly for monitoring and treatment of his sixty-five roses, and not for surgery.
This weekend is the GREAT STRIDES walk in Cincinnati. The support we have received from family and friends has been overwhelming. Our team nationally has raised $8,500 so far! The walk this weekend is at Sawyer Point. Registration starts at 9am and the walk begins at 10. We would LOVE to have anyone and everyone who is interested walk with us. We're having a team picture taken at 9:20 am by the stage, so if you are there please come and join us. I will be going with Ella and maybe Lily, and Martin will be staying home with Drew. We haven't really done a whole lot with Drew in terms of leaving the house, simply because we can't risk him catching anything before this next surgery (and, per my previous comment that our world currently revolves around the ostomy, if the bag were to leak while we were out it would be a royal disaster). So Martin will be there in spirit.
That's all I've got...for now :)