I think one of the hardest thing about having a baby or child on a ventilator is the jealously and envy we have when we see “normal” children. The kids that were full term and had no issues. In the trach parent community we all have friends with kids and we see them either on Facebook or in real life hitting all their milestones with no problem and I know I find that hard to watch. That doesn’t mean I hate their babies or have resentment towards them just that I’m envious of a life that I most likely will never get to live. Katie most likely will be my only child, so I most likely will never have the joy of carrying to full term. To be able to breast feed my child, watch them hit their milestones on time or before time. There is so much we have missed because she was born so damn early. We missed out on a normal babyhood and sometimes that breaks my heart. I got to see my nephew when he was a little under 9 months and this kid is crawling all over the place while I’m struggling to get her to just creep around to get to crawling. He pulls himself up into a standing position (which btw is 3 months ahead of time the little cute thing). He is currently taking his first steps at 10 months old which Katie isn’t doing yet. She’s so behind because of 7.5 months of being in NICU without being able to do anything because either she was sick or too little to do any development stuff. We didn’t even get to start doing any OT/PT until she was 6 months old 3 months corrected. I know she’ll get there but I have to say looking at everyone else’s children makes me feel jealous of their child and of their life.
Having said that I am extremely proud of Katie’s progress, she has come so far from where she was. She’s healthier, happier, and absolutely amazing. This little less than 20 pounder has gone through 5 surgeries, 6 different procedures and has come close to not making it a few times during the NICU stay but she’s still here. That’s why I believe she is my hero. The theme for her 2nd birthday party is Supergirl which I find fitting because she really is a super girl. She won’t have the trach removed by her birthday but she’ll be off the vent off 24/7 and that will be absolutely awesome. I can’t wait to just be able to hold her and be with her without worrying about having to carry all the machinery with us anymore. I want her to be like everyone else and just have a life that is full of joy and not so filled with doctor’s appointments.
This is the most difficult road I’ve ever traveled and I’m looking forward to getting to the end of the road and getting to just be normal for the first time in years. In the last four years we have lost a son that we badly wanted at 5 months pregnant and then the years of depression and then followed by the pregnancy with Katie and the cerclage placed, hoping an praying that she would stay inside only to have her be born at 26 weeks, the ensuing 225 days in the NICU, the trach and g-tube place, her coming home, the nurses and the privacy you lose with having nurses. The appointments, the stress, the trying to keep yourself together. Sometimes it’s just too much and there are times where I would love nothing better than to curl up in a ball and just cry. But then I pick myself up again and go about my day. Do the best I can possibly do for my little girl because this process definitely sucks but she’s what matters. One day we will get to have a normal life and that day is worth waiting for. She was worth waiting for.