Thursday, November 12, 2009

Weight Watchers, Move Over: Abigail's Diet Plan

I wonder what is worse:  sitting by the bed of your heart-patient infant, without be able to do anything to be of assistance, or to finally be in a position when you can do something, but not quite sure what you can do to help her, after you've tried all you think of?  We had the latter problem yesterday with the baby's eating.

We came in this morning to the news that Abigail had lost weight compared to yesterday,which really wasn't a surprise based on her lack of eating yesterday.  However, it was still disheartening.  Apparently, Abigail is already concerned about her weight, and has decided to go on a diet. Do you think Oprah would pay big bucks for Abigail's secret?

We were present during the doctors "rounds" this morning, and when the nurse practitioner suggested that we should still be good for a Saturday discharge, I was watching the attending physician's body language,which seemed to suggest that Saturday was up in the air at this point.  In fact, he even added the disclaimer to the nurse's statement--"probably."  Ugh.

Now we have the fun dilemma of trying to figure out when to book a flight.  One option is to wait till we know when we're being discharged, but that might mean that (A) we will get creamed on price by the airlines, whose mission is to take advantage of their customers whenever possible, or (B) that there won't be any room on the direct flights the day (or day after we get discharged). The other option would be to schedule a flight a few days after the expected discharge date, but that seems agonizing--like telling your kids on Christmas morning that you're going to wait till New Year's Day to open presents:  just keep these presents in your room, and don't open them for another week. Throw in the concerns we already have about putting her on a plane with everyone's swine flu and RSV floating in the air, and you can imagine that we have some anxiety about getting back to Utah.  (Of course, driving isn't a good alternative either, as the thought of driving in snow through the middle of nowhere for a very long time with a hospital nowhere in sight, while Abigail labors in a car seat for more than 12 hours is not a feasible alternative).  The insurance company has unequivocally stated that they will not pay for return transport aboard any kind of air ambulance--which I can understand (they're reeling at this point).

They also did another EKG this morning (they did one one yesterday as well) to look at her heart again.  They    reassured us that there was nothing to be concerned about, but that they just wanted to double check the condition of her coronary arteries.  As you will recall, the placement of the coronaries were one thing that made her surgery a little scary to Primary Children's, and was one of the reasons she was shipped here.  This morning the attending physician reminded us of that fact, and said they had to perform a "special procedure" to remove and re-attach those arteries without damaging them. I, of course, am probably reading too much into it, but it seemed like the additional EKG was more than just a precaution, as if  there was something to be mildly concerned about.  Then again, doctors are trained to think in worst case scenarios (especially here) and they would rather double and triple check something rather than miss it.

I'm sure that for quite some time Lisa and I will worry about every sneeze Abigail makes.  In fact, one of the nurses at Primary Children's, who had a child in the NICU for a while, warned me that I would be over protective of this one, and would tend to shed too much attention and provide extra leniency to Abigail--a fact that Abigail (and the other kids) would pick up on.   If you're not careful, he said, your little NICU patient will take advantage of that, and the other four will resent it.  Throw in the fact that she is now "the baby" of the family by seven years and we may have a spoiled one our hands.

So, we'll keep that in mind for the future, but for right now, we have a bunch of people, including four siblings, who are dying to spoil her.  Picture of the day below.


Not much baby fat on this body:  skin and bones!


All bundled up




5 comments:

Aim said...

I am so hoping that Abby is doing well enough for you to come home this weekend. But it would be better for them to be totally sure that she is ready to go. We will pray for her to be able to gain weight so she can come home. I can't wait until I get to see her!

Amber Schmidt said...

We used to battle the weight thing with Kyleigh... oh wait... we still DO... that's right... its gotten to be so normal that we forgot we still do it. And yes... you will jump at every cough and ache and cry and waking in the middle of the night. Kyleigh is 3 and a half we still do. We finally looked at ourselves the other day and said "We are going to HAVE to start disciplining her soon..." LOL

Just as a total nosey "I had a OHS surgery kid" question... does Abby still have her pacer wires in tact? I was trying to see if that is what was bandaged under her sternal incision.... I am thinking it looks like her jp drain is gone but she still has leads...

COLEMAN said...

I cannot believe how cute those pictures of her are! I can't wait to see her!--Steffani

Sherri said...

We continue to pray for your sweet little Abagail...for you and Lisa and all of the kids. Thank you for sharing with us your journey.

If God brought you to it...He will bring you through it.

Lots of love to all of you,

The Orgills

Kristi said...

Jeff, Do you want me to come out there and show that princess how to eat? It is one of my greatest gifts.:)
She is so beautiful! We will also keep praying. We want you guys at family dinner on Sunday.
Love you both or for that matter love all 7 of you.
Kristi