Holding Steady

Sorry it has been a couple of days since my last post! I have found that time has slipped away! At the end of the day there are always these great plans to get this or that accomplished, (of course once our little entertainer is in bed), but in the end only 5 things of the 20 are finished. On a day back when life was normal this would have driven me mad, but of late I find myself allowing the "to-do" list for today to have some items on it that get moved to the "to-do" list of tomorrow! Procrastination has never been a strong suit, but I am learning.

Want to know another thing I am learning...besides that nasty thing called patience?! Why, Lord, why teach me patience! I never asked for it and don't want it!...I have learned to hold my tongue. Okay, stop laughing! For all those who know me or have even met me know that I am a girl with a flapping tongue! I don't hold back for no one, notta soul, absolutely nothing can stop my mouth from wagging! (I can only imagine how many people are smiling and thinking at this moment, "that's putting it mildly"). By some amazing feat by only God himself I have learned to keep my trap shut! What?! Holy Cow?! Seriously, my mouth has had a huge muzzle on it! I can't tell you how many times I have wanted to just burst out giving everyone a piece of my mind, especially when they say to leave Payson alone and not hold him or tell me how to hold, pat, touch or love him. There have been so many times when I have received a unhelpful comment when I have wanted to just blast them, but have held back realizing it isn't worth my energy. Plus, the one person who makes many of the comments just won't listen to me or change her ways which makes it not worthwhile to fight back. I have learned to keep my trap shut and I take a step back see if there is any rational or sense to their comment and decided if I'll listen to them or not. For the most part I adhere to what they feel is Payson's best medical interest even if it steps on my toes as his mommy. Needless to say I have left the NICU many a times patting myself on the back because I behaved. Not sure if this lesson will stick around after we leave the NICU, but hey it is a moment in time when I had my big girl panties on! Okay, you can get off the floor from your laughing fit over this paragraph...I am moving on! (:

In the last couple of weeks I have failed to mention much about our other children. Yes, we do have three others that haven't gotten much blogging time so let me update you a little on their lives. Walker, who started 7th grade last month seems to be doing well in school and seems to have taken a little more interest in his learning this year! Yea!!! We hope this is hear to stay! He is now several inches taller then me and loves to remind me of this fact! He'll come in look down at me and puff his chest out to me...I remind him I can still take him, but I am not so sure I could! He is one big kid! He is a huge help around the house with his chores and with entertaining Margaret Ruth when asked. He is such a sweet and tender big brother! On one of the many afternoons he spends time throwing the football to himself pretending to be a famous player I went outside with Margaret Ruth to swing her. Knowing I hadn't spent a lot of time in Walker's world lately I asked him to throw me the ball, he did and even taught me how to throw a football correctly! It made a lot of sense after he told me how hold the ball and now it spins when I throw it, (vs. tumbling over). He was so cute in teaching me. We spent about 20 mins. tossing it back and forth. During this time Margaret Ruth would go down the slide, run down the hill towards Walker (with her blond curls bouncing in the wind) and try to catch him. It is a sight I will forever hold in my heart because it was absolutely the sweetest thing. She would just giggle and giggle when Walker would run towards her or move out of her way. She even threw the ball a few times and has she got an arm on her, (we have also learned of this arm when she throws her bottles accidentally hitting us or when she purposely hits us). We have now embarked on the terrible two's, which I am sure could be worse, but it is close! She throws tantrums and will randomly cry and cry and cry! If it can be climbed, mounted or jumped off of she is all over it! That girl has no fear and it strikes the fear of God in her mother...Between her and Payson my mother's prayer has been answered to have a child who was just like me; now I have two! Oh, dear!!! The other day she was on top of the coffee table and decided to jump off! Luckily for her dad was there and barely caught her! Other times she will jump off the coffee table onto the couch bounce her head off the wall, say ouch then get up and do it again. She is full steam ahead that is for sure! Zach, is enjoying being in middle school and loves it! He has always been a studious student and that appears to be continuing into this year! He has gotten involved in the social aspect this year and has attended a school dance, gone to the movies with friends and had friends over. Girls are beginning to get onto his radar despite what he says, (this is the case for both boys...I have started to notice that they don't stink nearly as much as they used too). There is one girl who likes to text him a little too much and he denies liking it, but he loves it! (: He is growing, but not as quick as Walker, but he is getting there! He still spends his weeks with his mom and weekends with us. He is a huge help around the house and even works for his dad sometimes shooting! Zach is also sweet with Margaret Ruth by getting on her level. There are so many times when he'll be sitting on the floor and she will come sit right down in his lap. She adores both the boys so much! Okay, so that is a little update on the kiddo's now onto our sweet baby boy!

After Monday, Payson had a couple of bad days. He just couldn't rally himself back to his "normal" state. I keep thinking if having a study done causes this much distress I can only imagine how horrible it will be after surgery! (Since his personality is like mine...he is sure to surprise us)! Yesterday was really the first day he was sort of like himself with only a few breathing episodes. Today was a great day for him where he was very alert and interactive! Just as I was about to give him a bath the surgeon walks in and without even knowing it he was told (by his partner) to pull the central line!!!! Yea! One less line attached to this little boy! This line was the suspect for the cause of his blood infection a couple of weeks ago and since it will be at least 6 more weeks before surgery they felt it would be best to take it out. His chances for infection just went down a great deal by having this line removed! Now he might have to have it put back in when he goes into surgery, but they will gauge if he needs a central line or IV at that time. The surgeon who has never met me asked me to leave for a few minutes so I just sat down away from the bedside as he pulled out the line. This sounds simple which it is, but it is painful as they have to dig the line out. The nurse and I had braced ourselves for another dramatic episode where he'd be down and had to be suctioned for about 20 mins. As the nurse held Payson's head to one side and I watched the monitors I could tell he was crying,(Payson doesn't cry and if he does it is a weak cry, like a squeaking, but he does produce real tears), but he managed to maintain his numbers and his secretions. By the time the procedure was over our little man had made it through a painful aspect of his healing with no episode! He didn't even have to be suctioned! The nurse said he just bubbled out of his mouth and she was able to wipe it away! AMEN! This management of secretions is a huge step...Huge...(now that he is accomplishing this in a few weeks we are going to have to teach him how to swallow those secretions again...He is going to be so confused begging us to make up our minds)! I was so proud and even prouder to be able to hold him in my arms without having to worry about the central line being pulled. I think Payson was just as happy to have it out as we were! It is suspected that because of no episode that he liked the idea of having it out! He probably feels better without it in and is able to move more freely! The failure of his hearing test still crosses my mind. Sometimes I am confident he can hear me and others I am not! There are times that he'll be sound asleep until I come into the room and once he hears my voice he'll be wide awake. There are other times where he doesn't look at me when I first talk to him or if I jingle a toy! The thought of him being deaf frightens me, but until he retested it will just be in the back of my mind to haunt me every now and then!

On Wednesday we had a family meeting with all the nurses, doctors and even the occupational therapist. We had just reached a boiling point with things and felt that we all needed to get onto the same page! Plus, when Todd says he won't come into the hospital when a certain nurse in on duty, you know it is bad and needs to be fixed ASAP! Not sure how I feel about that meeting. Not sure if we got anywhere! At least it opened the lines of communication between all of us and informed the nurses to back off of the telling us when we can or can't hold Payson. We desperately tried to tell them a little about us so they'd know how much we love Payson and how dedicated we are to his recovery. We wanted them to know we aren't selfish parents, but doting parents who want what is best even if it means having to let go of some things. We also begged for some privacy. In order to have some of this forgein concept in the NICU we would have to move Payson to an overnight lounge where there is suction. It would be a pain, but not a huge deal. The benefits for us far out weight the hassle of it! I explained that I have concerns over me not being able to bond with him because of the lack of privacy and being told how to handle him. I asked for them to allow me to just let me be his mother and do mommy things with him...even if it was for an hour once a week! The lack of privacy has caused me to not put him to breast. I know, I know you can't breast feed him. Right I can't, but if I empty my boobs and allow him to latch on we can possible prevent any oral aversion he might develop because of his condition. It is pretty important to do this so that we aren't having to teach him how to swallow in the next coming months. He seems to still have that natural desire to suck and I have even caught him rooting a time or two. Good boy!!! But, with no privacy I find myself embarrassed to try this method. I think everyone is looking at me like I am a desperate fool who is being silly by having her baby who can't swallow latch on. Funny, I know, but it is how I feel!

Well, I am going to run off and hold Payson while I can before going home for the night! Oh, can you believe this little boy is now 8lbs. 15 oz.! He grows at least an ounce every day! Wow!