I have to be honest: I've put up a good front lately. I read over the last few blogs I wrote. Fun. Birthday. We're coping. Yea, right? Well, I'm not being very real. I know I'm going through a phase. I know the tears will dry up again soon. But, in the meanwhile, I might as well be honest.
How I feel: frustrated, tired, weary. I'm not grounded like I have been at times in the past. Noah's has been tube fed for one year. 6 months by NG tube. He has had his g-tube for just shy of 6 months. I've gone through each day lately counting down the minutes of each tube feed. Oh, no. Is he retching or just coughing? Should I vent or wait and see where this goes? If I give him a feed now, will he have time to settle the food before he needs to sleep. Oh no, he just went down and slept for 5 minutes and now he's coughing. Why is his skin breaking down at his stoma again? What am I doing wrong? I need to start a feed but we have an appointment. Should I feed him in the car even if I can't vent? Can he really handle dairy? When do we start trying a full liquid diet? Should I considering making him a homemade blended diet? How in the world can they charge so much for his formula? He is starting to fight his feeds: head-butting or hitting the venting syringe when I'm letting air out. How do I teach him to respect his tube while at the same time understanding his developing feelings towards it. How am I going to feed two babies in a few months?
So, should I buck up? Get strong? Keep it together? Remember those in worse off situations? Pray about it? It would be so much worse! He looks great. He looks so healthy! Just wait, he'll start eating you out of house and home someday. This to shall pass. When God closes a door he opens a window.
Lots of kids are much sicker than Noah. Lots of parents are much more worn out than we are. But, honestly, it is not easy having a child like Noah. It makes my head hurt that he has no diagnosis, no direction, no further specialized physician care. Each day seems a lot like the one before. I am really trying to make each day with Noah special and just like any other kid, but it is a tough slog.
But I appreciate your encouragement. When you ask how we are really doing. When you say "I can't understand what you are dealing with but we love you and want to support you in the best way possible." When you drop a note or phone call, even I don't respond right away :-) I am really learning how to build others up in a supportive way (I hope I don't lose progress on that with this blog entry).
I have a like/dislike relationship with the tube. I'm not unusual in that respect from other tube feeding parents. We need it. He's getting his nutrition. He's growing. But I feel like we just continue on, the same routine day after day, hoping that someday Noah will start eating or be able to tell us why he can't/won't. I'm doing it. Day in. Day out. I don't have to like it. I give myself permission to not like it.
I'll get it over this phase. I'll cease with the tears. Soon.