False Hope

William and Aaron had a good day today.  Aaron gained a good deal of weight last night, and is now just slightly under 5lbs!  All of his bloodwork related to his liver is trending better.  William is still on the cannula, but otherwise growing and feeding.  They've overcome so much in the past 12 weeks - I'm proud of the little guys!

So...homecoming...when I arrived today, I chatted with the nurse about homecoming plans for this weekend.  Aaron was still on track to come home Friday or Saturday, as expected, but William could be delayed or two due to the oxygen.  They need to figure out if a higher dose of caffeine helps him breathe without the assistance, or if he just needs it for feeds.  I understand that this needs to be straightened out before he comes home, but his nurse and I were thinking that perhaps they could both still come home on Saturday, and were trying to figure out the best timing for rooming in, pictures, carseat test, etc.

The nurse discussed the options with the doctor of the week.  New week = new doctor.  Actually, there's a brand spanking new, straight out of med school doctor this week.  Someone who doesn't know the boys at all, although she is being assisted by one of the other regular doctors.  The result of that conversation was - surprise - Aaron's weight gain isn't enough to get him home Friday or Saturday.  His chart shows that he is gaining weight steadily since switching to the extra vitamins and calories last week, and the doctor last week was perfectly fine with him going home with even the slightly lower curve from a few days ago.  We have grown a bit tired of the different opinions from different doctors, which is ultimately impeding the boys' progress and getting them home.  The doctors this week will not commit to any time for the boys to come home, and wouldn't say how much they think they will be delayed, be it a few days or a week.  Thankfully our nurse was able to ask the doctor questions for me, as I was a bit too upset to speak.

Ultimately, everything is fine and the boys will still be home soon.  I think we've handled the past few months fairly well, and remained sane and have done what we've needed to do to give the boys as much love and support as possible to get them home in good shape.  Handling this, however, has required a bit of suppression of emotions for me.  Now that we're getting closer and closer, those emotions are starting to bubble up and I've allowed myself to start fully experiencing the joys of getting them home...started to blow up the balloon...and today just deflated it.  The brand new doctor actually told me, for Aaron, that she wanted him to be in the safest place possible and didn't want us to need to coordinate scheduling pediatrician visits every couple of days to watch his weight gain.  Excuse me...we are perfectly capable of scheduling doctors' visits.  It's part of parenthood.  We are perfectly capable parents. I may give her feedback tomorrow on the wording of her excuse for keeping him there longer.

Obviously, I need a dose of positivity and need to get back to a state of inner peace with everything that is going on.  There's a state of tension right now waiting for the homecoming..the dangling carrot that keeps getting pulled away.  This post turned into more about ME than about the boys, which is not my intent of this blog :)  The boys are great. They are getting BIG and they have the best smiles and they are NOISY little guys, grunting and groaning all day :)  They'll still be home (at an undefined) soon!

Avastin

Surprise...the retinal specialist came today for Aaron's consultation, instead of Monday.  He did confirm the pediatric opthamologist's diagnosis, and recommended treatment...to happen today.  We opted to do the newer treatment of Avastin, which is an injection into the eye, instead of the standard laser surgery.  It went well, and he will have a follow up visit weekly for a while.  Hopefully one dose corrects the issue, but (as with everything else these days), we will need to wait and see.  He did cry during the whole procedure, but promptly fell asleep while I was holding him afterwards.  He was fairly lethargic for the next few hours but has perked back up and is eating fine now.  Poor little guy... he'll get lots of extra love the next few days. 

William had a good day.  I feel like the caffeine is helping him, as his sats have barely dipped the past few days.  He's still eating like a champ...he's a hungry chunky monkey! :)