Monday, February 21, 2011

They Might Be Giants

No, not these guys, OUR guys. We had a pediatrician appointment on Thurs and our doc was shocked to see how much they'd grown since the last appointment. Frankly, so was I...

Simon:
16lbs6oz,
26" long
75th percentile for height and weight (up from 25th percentile last month)

Linus:
14lbs, 25" long
25th percentile for height
35th percentile for weight (wasn't even ON the chart last month)

Dexter:
16lbs9oz
26.5" long
75th percentile for height and weight (up from 35th percentile last month)

Disappointing Surgery Update:
I've been able to keep a pretty steady dose of denial in place these last few weeks as we waited for Linus's surgery date to draw near. I needed it to function. A few days ago I kept "feeling strange" and having stomach issues. I hoped beyond hope that I wasn't getting sick. I finally realized it was repressed anxiety. The minute Linus's surgery would come to mind, my stomach would drop and have that horrible butterfly feeling. My denial was slipping. Also slipping was Linus's health. He's been on a slow downhill slide, but over the last few days he's been noticeably worse. He barely eats anything by mouth, sleeps most of the day away, the slightest exertion has him drenched in sweat and he's had a few color changing episodes. Last night he turned pale blue around the mouth. Yesterday I worked my last day before starting my 2 weeks off . My mom drove into town to help us care for the boys and ourselves over the next few weeks. This morning Trina and Linus drove to the hospital to have him admitted and have his pre-op testing done for tomorrow's surgery. They got there around 7AM, dealt with paperwork and went to the lab. Drawing blood from Linus is a nightmarish ordeal. Every vein he has has been poked and prodded and ruined over the last few months. Today was no exception. They held him down and dug around in his arm making him scream, turn blue and soak his clothes with sweat. Trina was so upset at how roughly he was handled. When she got back upstairs, they informed her that all of the surgeries for the next few days had been cancelled do to an influx of emergencies and a heart/lung transplant. The CVICU was full so Linus would have no place to go post op. Trina was livid that she hadn't been told this BEFORE she drove the hour and a half to the hospital and BEFORE she put our fragile son through that terrible, now pointless, blood draw. We've been told that we will get a call "in the next few days" to reschedule. In the meantime I'll go back to work and we have no idea if my mom should stay or go home (6hrs away) and come back. This is NOT how I pictured this going. My boy is sick and he needs this surgery sooner rather than later. The anticipation is rough on me, but the wait is killing him.

I'll leave you with sad baby pictures because they most accurately depict my current state of mind...

Screaming Simon

Low Spirited Linus
(notice the single tear rolling down)

Dejected Dexter

18 comments:

Heather said...

oh my gosh! Those sad faces are breaking my heart!!! I hope that they are able to get Linus in soon, and your able to put all of this behind you. We'll be thinking of your family =)

tinyblossom said...

WTF? That is absolutely cruel of the hospital. I'm so very sorry that you have yet another hurdle. You and Trina have been heroic throughout this ordeal. I'm glad you have your mom to help take care of the boys and youselves. Poor Linus. I know it is heartbreaking to watch your baby just get sicker and sicker. I hope they can get him in right away. I'll be saying prayers for your and your family tonight.

Next in Line said...

So sorry for what Linus and all of you have been through. There is no wonder your tummy hurts. Hugs.

N said...

Poor sad boys! They break my heart.

I can't believe the surgery got postponed, let alone that they didn't even let you guys know until all the pre-op stuff was happening. That's just cruel. :(

Pyjammy Pam said...

Oh god, those are the cutest sad babies ever.

As always, sweet Linus bear is in my thoughts, along with his brothers and mommies. Hope he gets his surgery date v soon.

Farfalla said...

Someone should make the people who changed his surgery look at that picture of Linus. That is the saddest face in the whole world.

I'm no stranger to anticipation anxiety, so I'll be wishing/hoping/praying that you get the call ASAP.

Edward said...

Breaks my heart to hear your trials! Your family is in our thoughts and prayers.

H2 said...

Even sad they're adorable. I'm sorry for the hospital ordeal. I can imagine how frustrating that would be do make him expend so much energy over the blood draw only to have it be pointless. :( Hugs Mama.

K J and the kids said...

I'm so glad that I read how great big they are growing before looking at those sad pathetic little faces. Break your heart those faces will.

I'm SO sorry about the hospital issues. I can't imagine how enraged you both are. Praying that they get you in quickly so the healing can begin.

CoffeeBlue said...

Sending all of you (and especially Linus!) strength as you get through this.

PS. They Might Be Giants was how I met my lovely wife. They were playing on her myspace page 4+ years ago when I emailed her for the first time to compliment her taste in music :)

anofferingoflove said...

aw, those sad baby faces break my heart (x3!)

keeping your sweet linus in my thoughts. ((()))

jade said...

This is insane, talking about emergencies having to go first, as if Linus hasn't waited long enough! I don't see why any others should get priority and I think all your readers were looking forward to today as being the day after - you have a right to be very angry about the whole situation, but that will not solve your stomach issue, now will it. Hang in there, we're all with you (and yeah for the growing babies! Even more impressive how Linus is growing, despite his poor health). Big hug, if that is of any use

Samantha & Anne said...

That's terrible that the hospital didn't call you. Your family, and especially Linus are in our prayers as you face this next step.

Christine said...

Wow, that is terrible. You should contact the patient advocate for your hospital and see what they can do for you. How did the nurses doing preop not know that surgeries had been cancelled *boggle*

My son Charlie is also a horrible stick. We have the best luck with head sticks, so we have them try there first. We also only let a given person try once (maybe twice if I know them). Generally we require either a NICU nurse or the vascular team or one critical care nurse who has some kind of magic fingers. We also make them take breaks if they aren't getting it done and they have to swaddle all his other parts except what they need out for the procedure.

allie :^) said...

ok that pic of linus is heartbreakinig. so sorry for this bad turn of events!!! :O crossing fingers and toes that he is in soon! :) what surgery is he having? just wondered if it matched up with any of q's... :) praying for you guys! :)

Pomegranate said...

I cannot believe they did that to Linus, to Trina, to all of you. How irresponsible of them.

Even sad, your boys are too adorable.

Thinking of you...

amilydiaries said...

I am still in awe of the strength you two have. The boys are so lucky to have such strong mommies. I am so sorry Linus's surgery ended up like this. Your family stays in my prayers.

Baba and Mama said...

I am tears....Praying these dr's get their crap together NOW.