Discharge Planning

On Wednesday we had a much needed and appreciated "discharge planning meeting" to talk with all the key players about what it's going to take to get the boys home. Although discharge is certainly not on the horizon yet, it felt good to review all the progress the boys have made and where we go from here.

Nolan's worst enemy is the reflux. Pretty much all of his desats and bradys are during or after feeds. In good news however, the higher angle he is now lying on with Asher in the crib seems to be helping him. Our pediatrician will re-evaluate on Monday and if he isn't markedly improved over the week since he was put on the wedge, she will introduce further upper GI testing and look at the possibility of surgery if he can't just outgrow this problem on his own.

Asher's main issue is his ongoing need for caffeine to help his respiratory drive. Although his reflux is still present and painful he seems to handle it better than Nolan and it doesn't seem to be such a stumbling block for homecoming. Asher has very few desats and bradys now; however that is possibly because he is still on caffeine. Our pediatrician is slowly starting to wean him from the caffeine over the next week or so and if his episodes start up again she will involve the neurologist to see what is going on in his brain to cause the respiratory drive to not be functioning as it should. There is far too much risk in sending Asher home on caffeine because the result of weaning him could be very, very bad if he were to plummet outside of the hospital. Therefore, figuring out why he still needs it and how to get him off of it are mandatory for getting him home.

In addition to going through those major items for each of them (and some others for Asher that don't seem to be preventing homecoming - for example his hydrocele, umbilical hernia and slightly open heart duct) we discussed daily life when they come home. It is going to be overwhelming to say the least. Let's not forget the sole fact that we are bringing home twins. That is overwhelming enough! But then throw in the added stress that comes with their lengthy list of medications and all the retrofitting that will need to happen to allow them to partake in normal baby activities. Their crib will need a wedge and a sling; their bouncy chairs and swing need the seats reinforced to keep them from slumping; they'll need to go on a wedge to lie on their activity mats and tummy time will require rolls under them to keep their trunks high. Ughhhh. All of this for the reflux! And then there's the endless pediatrician, NICU followup, infant development and specialist appointments to take them to. And finally, and probably most importantly, there's the act of feeding them without having them either turn blue or throw up everything as quickly as they've eaten it. It is an exact science that deserves a post on its own (which I will get to at some point). Don't get me wrong, when the time comes to bring them home we will be thrilled, but I am starting to wonder if it's actually going to be any easier??

Some very positive things did come out of this meeting though. One is that Jordan and I are now allowed to feed the boys off monitor. This means that our doctor has enough confidence in us to know that we see bradys and desats related to feeding coming by watching the boys and their cues, not the monitors. Secondly, as long as it is not for a feed we are allowed to take the boys to the family room, again off monitor, to hang out and be a bit more relaxed. Both big steps in the right direction.

I will leave you with some more shots of the boys in their new home. Asher is completely in love with Nolan; Nolan is not so sure.

Their back corner "private room" complete with their own personal iPod dock to help enhance their brains with classical music and Metallica lullabies.