Frazzled- A journal by Ellie's mom

Ok...I know, the title is a little over the top...but that is how I feel today. I think I just need to vent a little, so bear with me.

I feel a bit selfish writing this because I should feel nothing but joy and relief. I have 2 healthy kids who I love more than anything, but I feel exhaustion and defeat today. Reid's lip looks absolutely awesome. We are in awe of his new look, and he is smiling more everyday which is every parent's love. I am so amazed at this little guy for all he has been through. I am sure I would be a total grump if I had to go through half his journey. I have to remind myself of this.

Reid is really having a tough time with his nights. He never has been a great sleeper. He always has gotten me up at night to feed...and I was ok with this..because he would go back down nicely after eating in the night. Well, for the past week since his lip repair...we have had really hard nights. I think last night was the worst, and that is why I am feeling so frazzled today.

I hate the stage of childhood when kids can not tell you what is wrong. For right now, I am guessing. Is it his lip? Does he hurt? Is he gassy and crampy? Is he too hot or cold? Are his nasal stints bugging him? Does he need pain medication? What can I do to comfort him? And on and on it goes. He has been sleeping in his car seat since his surgery due to having to sleep on his back. He is NOT a back sleeper, but can rest fairly comfortably in his car seat. He slept in it exclusively for the first 4 months or so due to his reflux. The arm restraints were no fun, I know that. He was unable to soothe himself by grabbing his blanket. I know this was tough for him.

So, yesterday we got the ok that he can sleep on his belly amd take the restraints off. I thought he would be so happy and sleep well. Nope. Not even close. He was up hourly or every hour and a half and would sometimes be up for 40-60 minutes crying. I kept him on pain meds...but still the crying. I really think his belly hurt him. I am just guessing. He didn't want to eat and would push anything away that I brought near to him. He wanted nothing to do with his bottle. Again, could be the pain from his lip, too. So, I finally got him settled after 3:30 am....when a wailing cry came from his room at 5 am. I went up to see what it was this time (I had been up with him at least 7-8 times at this point) and I found his nasal stint half in his nose and half out. Great. So, I had to wake Brian...yes, you heard me. He has the gift of sleeping through all this, but I needed his help to get the stint back it. To make a long story short...it took 30 minutes, 4 hands, a thrashing baby, and screaming that you can not imagine from Reid to get everything back in its place. I got him back down by 6, and then Brian was up for the day. I crawled back in bed....for a bit....and then was awakened for the day at 7:15 by Ellie. How she slept through all of the screaming, I will never know. It was horrible. So, if I could estimate how much sleep I have gotten in the past 5 nights...it is probably just over 10 hours total. For real. I am a mess.

So, why the journal? Poor me, time? No. Just time to vent and time to get any advice from all of you who have done it. I don't know how I am going to make it through with the stints. Cleaning them and putting them back in is a nightmare. I am thinking we will have to do it when he is asleep. He will most likely wake up, but we may get some done while he rests. It is too hard to get them all settled and taped down with steri strips and Mastisol with a baby who is too strong for his own good. Reid had a hold of my hands while we were stabalizing his head to get the stint it, and he wrapped his legs around Brian's arms and was pushing so hard. He is so strong and terribly obstinate. I am glad. He would have to be to put up with all of this. But, these are going to be a very long 3 months. Very.

I did feed Reid some solids today. Rice cereal with apples and cinnamon. He ate about 1/3 of the jar. Then, didn't want anything to do with it. He hasn't eaten real well today with his formula either. Just not right.

So, again....I just needed to vent that all out. I love my kids dearly, but I am a bit worse for worn today. I feel that I am in a fog and can't get out. Reid just wants held. He doesn't want me to put him down. It is exhausting running on fumes and carrying around a 20 pound little guy everywhere. I pray this subsides and he can rest soon. We all need the rest.

Well, my time is done. Both kids are resting now. For how long, I never know....but I need to put my head down as well. Thanks for reading and if anything comes to mind...or if you had similar issues, that always is helpful to me. It's nice to not feel alone in this journey. I haven't very often....but today, I have just hit bottom.

I am lucky, and blessed beyond belief. I know this. I just needed to get some thoughts out. Thanks for being my sounding board.

Until next time.....