Closing in on 100 days...

As we close in on the 100 day mark of Payson life and our life in the NICU I find myself riding an emotional roller coaster. It seems that I am more emotional now then I was when I was pregnant, but then again I should check with Todd before making that statement! (: I feel that this roller coaster has been caused by the physical and emotional exhaustion that is beginning to set in. Yup, just when I should be well rested and ready for baby I am ready to head off on a vacation A-L-O-N-E! There are so many days that I just want to throw my hands up and quit! Not that I would ever quit on Payson, but some days just the thought of the hospital is enough to make me want to put my head under a pillow and wish it away! Most people would think that when we are here at the hospital we are able to just hang out with Payson. Hahahaha, that is what I used to think too until we became parents of a hospitalized child. I am lucky if I get to hold my son for an hour and that is after the pumping, medical updates, doctors visits, treatment discussions, diaper changes, baths and medically preparing to bring him home! Most of the time I am just trying to stay on top of all the Doctors my son needs to see before discharge and discussing medications. It doesn't sound complicated or exhausting on paper, but trust me it is an up hill battle both ways in 6 foot snow drifts, (my grandmother would say I should be glad they are just drifts and not actual 6 feet of snow (: )!

As we are beginning to hear more and more rumblings of going home we are now faced with the reality of what life will be like for us. I don't know what I was thinking, but I clearly wasn't thinking. I knew we'd be home with a g-tube, but I didn't think we'd be using it. I guess I figured once we got the okay to feed him that we'd jump quickly into breast feeding and the g-tube would be a back up. Was I even listening to the Doctors when they told me it would be a long road to feed him? Actually I think I had blogged about it, but I never dreamed that I would only be allowed to feed him once a day in the presence of a speech therapist. Instead of mainly breast feeding we are looking at the opposite of mainly g-tube (or bottle) feeds and occasional breast feeds. My boobs have leaked, ached and been attached to a machine for 3 months for that? Seriously? With this realization I have determined that if the swallow tests reveals complications with swallowing that I am going to have to give it up! Amen, sister! This has been just another thing to do and it will be nice on Tuesday to just get a direction! Of course that determined part of me insists on making us tread through so that we can say we were successful, but success ain't that great! (: Did you know that the balloon on the g-tube can leak? Ewwww! Did you know that they expect me to reinsert the g-tube if it was to fall out spilling curdled breast milk all over? Um, Yuck! Are they kidding me? Me, who now finds myself gagging when I change my daughters diapers, who is scared to death to cause any type of physical pain, (I have got the emotional pain down pat, right Mom?!) Me, little ole me with no nursing skills what so ever is now going to be responsible for a 3 month old baby who has medical needs. Another thing I didn't realize is how much medical supplies we will need! I knew about the pump, but never counted on the other items needed for Payson. Now can you imagine storing that stuff in a place where Margaret Ruth can't find it? Ha, good luck with that! (:

On the other hand some of this emotional roller coaster and exhaustion can be blamed on the medical professionals. I mean they are great and all, but they all have different opinions on Payson's care and when he can come home. Last Monday, we were told that we'd be able to bring Payson home early this coming week. Then Wed. they decided he'd need a swallow study, (they feed him by bottle then X-RAY to see how his coordination with swallowing, breathing are working...We need to make sure he won't aspirate), before going home so maybe after the study on Tuesday. Then some of the nurses felt that no matter what we'd be able to leave on Tuesday, some have told me that we wouldn't get the go ahead until later this week...ARRRR, someone just tell me when we have been discharged instead of this wishy washy, back and forth bull! So, I think some of the discouragement in my heart stems from all the back and forth of going home with him!

Then to make matters worse I find myself saving a little bit of emotion to be angry! Like all the other emotions weren't enough I have this dozy to deal with! ARRR Believe it or not I have managed to find some anger towards our "friends". You know the ones: you were close too, but who have made little attempts to reach out during this time. Seriously people?! What are you thinking? I know this medical nightmare can be awkward to talk about and maybe you are unsure on what to do, but picking up the phone would be a great start. I don't know why I am angry and hurt over this, but I just am and feel justified in my thinking. Thankfully for every "friend" we feel let down by God has given us 2x the support with new friends we have met. These new friends have unexpectedly stepped up to the plate and have been there for us with meals, watching Margaret Ruth, supplying a listening ear and armored with words of encouragement! Of course we have our good ole faithful friends who call us to check in and offer help of any kind! I guess I shouldn't be angry at those friends who haven't lifted a finger/phone to check in, but should rejoice in the fact that God has expanded our friend base.

As if that wasn't enough of an emotional roller coaster I have decided to read a book called Womanly Dominion. It is a book on how to be a more graceful, quieter, spiritual support for my husband aka my role in the family! Okay, stop laughing people I said I was reading it I didn't say anything about doing the suggestions! I guess it is the graceful and quiet that made everyone snicker! Oh, well!

So, this week is D-day...discharge day week! Not sure when, but it is coming! Today we will be ordering supplies and seeing the last of the doctors that need to see him! Woohoo, but the day is up in the air. Thankfully just in time we have a scheduled time to get the H1N1.

We will keep you posted on his homecoming!