Weary and Weepy

It is after midnight as I begin this post.  Today was so highly emotional and raw.  I am weary and I am weepy. In fact, I think I have been crying for like three hours straight now.  Life right now...it's a lot to take in day after day, I can't lie about that.  Today it seems to have all caught up with me.  I know that we are close now. I know the anticipation of it is hitting both my husband and I hard. My husband is the rock. He is positive. He smiles. Never gets down. Never complains. Tonight, for the first time since this all began two months ago, I see that he needs me back more than ever. I am torn, always torn. I am a wife and a mommy and I want to be able to be those things to my family, but instead today I sat bedside in a chair because I could be nothing. I couldn't help my husband. I couldn't help my two older boys who are crying out for me and I couldn't help Paxton who was in pain and hungry. I tried to hold him tonight but since he cannot eat until morning and is ravenous, just being near me made him root and try to eat...if you follow me!  So I had to put him back in his bed because I was not going to torture him like that.

He did amazing through surgery.  Here is his post op picture for those who haven't seen it. As I have said before and I will say it again, I post these pictures so you all can really see just how amazingly brave and strong our son is.  No baby should ever have to endure all that he has, but Paxton does it with a grace that brings me to tears. I should also note that this is the FIRST picture of Paxton with zero tubes on his face since the day he was born two months ago. How beautiful to see his entire gorgeous face! Yes his head is shaved, they had to cut his hair where they put an IV put into it. Again, so brave, just the thought of that makes me cringe.

Surgery was fast and they did not have to intubate him.  Recovery was hard on him. He was grumpy, painful and hungry. At one point his color got dusky, his oxygen quickly dipped down into the low 60's and he has to be greater than 75. So we put him on blow by oxygen which seemed to help him. It was pretty nerve wracking for about 15 minutes there while I stood by and let his nurse do what he needed to do to assess the situation.  Then I had to leave because his neighbor was not doing good at all.  They, then decided at the end of the day to move his bed to another room at the end of the hall for staffing purposes.  I was NOT happy about this, but never say a word about anything so I just went with it.  He was moved around 6. Shift change is at 7 and by 8:30 no one had been around to assess him or even look at him so I was getting antsy.  I needed to come back here and go to bed, but I was not about to leave my son, who is what they call a "blue diamond" because he's so risky, alone with no one monitoring him. Eventually I went to get the charge nurse to see how this could be resolved. In a nutshell my friends, I have never been treated the way I was treated by her. I was horrified, crying, standing there with my jaw on the floor.  Apathetic and rude. She literally left me standing there sobbing. No lie!  Nearly all of the nurses we have had have been amazing, kind and comforting. We have a couple who are above and beyond hands down the best, you know who you are H and S! Paxton loves you! So needless to say I was floored with how this nurse was treating a new, scared, stressed Mom.  I handled it the only way I know how... by crying. On the inside I wanted to be this big bad Mom, but I always wind up in a puddle of tears. Man, I gotta work on that!  So then, I decided I was not leaving my sons bed until he was fast asleep and here I am at midnight, eyes barely open updating all of the blessings that have been handed to us in these past few months, that's you all, our readers.  Your comments, support and prayers literally got me through this endless day today, from the bottom of my heart I thank you!  I will be addressing the situation that happened tomorrow with a higher up, just fyi.  That lady has zero business working in the department she is in.  

As I was walking out of the hospital tonight and up the stairs of the Ronald McDonald house at the hour that it is, I looked ahead of me and saw another Mom and someones Dad. We were all walking beaten and weary up the stairs to collapse into our beds. I couldn't help but be in awe of this journey that my family and so many others are walking.  It's long and it's hard, but we all suck it up and do what we need to do for our babies.  They need us and somehow we muster up the strength to be there. Paxton made it through another surgery.  He is here with us and as of now, he is stable and on the path towards home.  I laid my head beside his tonight and told him all about how close we were to taking him home for the first time. I told him how excited his brothers are to meet him and I told him everything was going to be alright.  I think I was telling us both that, but he understood. He looked dead into my eyes with his gorgeous blue ones and spoke volumes, my old soul, he who lifts me up when I am down.  While I do not let the struggles outweigh the victories, I do see that our family is tired.  I also know that tomorrow is another day and we will all wake up in better spirits. We will do this, we have done it this far and we will do it until the end. This is in fact, just the beginning of this journey and each day of it I learn something new.  Something big, sometimes something small, but I learn and I just know that in the end this will make us all stronger and wiser. In fact, it already has my friends.

Tomorrow, the better day that I just know it's going to be, I will update with some pictures of Paxton in better spirits and I want to share about my time with the older boys!  The pictures are darling and I just have to share, but my body is telling me to say good night for now!  Thank you again for joining us on this roller coaster ride! It means so very much to know that we are not alone! 

Of course, one last picture of me snuggling with my boy just before surgery.  The last one with tubes on his face, finally! He's crying because he's hungry and the picture is smeared because my Mason had his grubby, little, delicious hands on my camera while I was home last and apparently he also knows how to get the lens cap off!