Reed All About It!

Disclaimer...
          this is a feel sorry for myself post. Probably not going to be a sunshine and rainbows post. As always, I am well aware of our blessings and that life could be so much harder. Here is my vent. And excuse the grammar. venting = rambling = bad typing and grammar.  I am just so frustrated with Bricen's eating. I'm not sure who to even be frustrated with. It's definitely not him, poor guy. I am afraid to be frustrated with God, and I know he is ultimately responsible for our blessings so that leaves me frustrated, ticked and sick to death of several things with no one to blame. I'm sick and tired of fighting for every calorie, ounce, etc. I'm sick of being on edge and saying a prayer everytime I start a tube feed, praying that he keeps it down. Sick of people commenting on how little he is and asking how old he is. One lady said she could tell he was older by the way he acted but he was just so little she didn't know. I know that's a good thing. So so thankful cognitively he is on track. I'm sick of stressing and being on edge that a Dr appt is coming up and will his wt gain be enough. I'm tired of buying 6-9mo clothes for my almost 12 mo old son. Sick of being scared to try new things, afraid it will make things worse instead of better and he will lose weight in the process. I'm sick to death of having to wake this poor baby up to feed him (yes there is a tube feed, but usually he wakes up with at a minimum, a little spit up. I'm sick of not sleeping. Sick of not sleeping in my bed, with my husband, sick of sleeping on the couch because we do feeds so late and its not fair to the person working the next day to be up til 3-4 am. He is almost  a year old. He is such a good sleeper. I think if it wasn't for eating he'd sleep all night. I'm sick of trying new feeds and feeding schedules for our three day trials. I guess because I'm afraid with each one he won't do well. I'm sick to death of the puking. It's not every feed thank God but the possibility of it being every feed is there. We fight to keep him happy, not hurt (which can be a challenge since he is a dare devil these days) because if he cries with a full belly that gag reflex will send all those calories back up. Sick of trying to keep him somewhat still for an hr feed and or following him around with the pole and pump and trying to keep the cord from getting tangled and caught.  Last night he was having a hard time going to sleep. He was sleepy but fighting sleep. In my head I thought if he was a "normal" baby that I could count on not throwing up and possibly ending up with aspiration pneumonia, I'd lay him down and see if he cried himself to sleep. So then I started thinking, I guess I'll have to try to start timing bedtime out so his belly is empty.
          And here is the thing. I can't even wright this stuff and have these feelings without feeling guilty. I love my God and I am so very thankful for our blessings. I'm just having a weak day. You will all probably think I'm part devil but I'm even sick of hearing about these super chunky babies. Is that horrible or what? I don't want all babies in the world to have eating problems. I just prefer not hear about the super chunky ones right now. We have 12mo pics today. While I don't know if I'd do it but I'd like the opportunity to have a "cake smash" session. He could smash the cake, but will gag if any gets in his little mouth. I've been playing with different things, trying to come up with something different than cake to have for his birthday. By playing with things I mean, oreos, ice cream, pudding, anything I can stick a candle in and he won't gag on for his birthday parties. I'm sick of stressing because someone (Marty and I have both been guilty) slept through the last feed of the night. If it happens on a feeding trial day will he get dehydrated, etc. Those days the numbers are crunched and the plan allows for him to get just enough calories/mls to keep him maintained and hydrated while getting him hungry enough so hopefully he takes more in by mouth. I'm sick of work having this mandatory crap (okay, in reality probably very justifiable mandatory crap) that has to be done m-f that I have to stress over how I'm going to get it done. I finally got my hair done. I looked like a classic character on (insert any trash show of  your choice here) with two different, three different color hair. I'm ashamed to admit that earlier in the week he had a bad spit up and I literally looked up at the ceiling and asked seriously God? Who does that? who gets a little miracle baby and then shows frustration with an all mighty God? Apparently this girl does. Lucky for me, he is a forgiving God that knows my true heart is a thankful heart well aware of her blessings. ugh...
          So, what do we do? Speech Therapy asked me the other day if she needed to get out the papers from our first visit so we can see how far we've come. I told her I just wanted to make sure I was doing everything I needed to do in order to help Bricen. She then asked if I needed to confess anything. As abrupt (some might say rude) as she is, that's just her personality. For some reason, I like her. lol Of course I did not have anything to confess but isn't that what any descent mom would do?
          p.s. my alarm on my phone just went off. I hate the sound. Not because it's an alarm but because it's the alarm I woke up to when I was staying at the Ronald McDonald house (Ron's house). It brings back icky feelings and helps remind me how far we've come. still frustrated. lol So, back to what do we do? I guess we keep on keeping on. Haha Try to focus on how far we've come. It's not been easy. I am proud of our process and really it's Bricen's achievements. I am proud that so far we haven't had any hospital stays for pneumonias, etc. I think part of that is the fact that Marty and I watch this baby like a hawk. Our whole lives are centered on his feedings and keeping them down and (more so in the beginning) getting him sat up or on his side if he started to throw up. As it should be. I'd walk through fire for this baby, so what's a little frustration? Nothing. I'm officially putting my big girl panties on (no comments from the skinny chicks in the world, please) and moving on.
          We've got lots of exciting times coming up. Birthday parties (Bricen's two parties and he has a couple cousins with birthdays coming up), Halloween, 12 mo pics today (Daddy is supppper excited about these, he just can't contain himself), then before we know it it'll be Thanksgiving and Christmas!!! As mentioned above, we've been trying to prep for birthday cake. If nothing else, he looked adorable and it was hilarious at times. We will post pics later. And Aunt Bri gave him a birthday gift early. We have plenty of pics of that as well. Big things happening for the little guy. ;0)
          p.s.s. (am I the queen of these ( ) or what?)