A Gift that presents a Dilemma

September 9th

Today was a pretty good day. The better news is that we seem to be stringing together a few of these lately. Tyler and Parker both have seen decreases in the oxygen requirements and both continue to feed and grow.......and grow they are!!!....Tyler has lost a bit over the past two days, but is still weighing in at a whopping 5 pounds six ounces!!! Little bro Parker is......wait for it......wait for it.......now officially in the 5 pound club!!!! Yeah Baby.....over 10 pounds of twin bliss!!!! They still desat and even have bouts of bradycardia (heart rate drops dramatically), but they are continually getting better at "self resolving" which is to say they "snap out of it on their own for the most part. We spoke with yet another doctor today about the possibility/probability of long term physiological and neurological damage only to be given the same response. The probability is high, but we just won't know to what extent on either front for years......not until they start making/missing benchmarks as they grow.
That's the stuff that'll drive ya crazy.......although it's not cuz we're focused on the progress we are currently making!!! It's that progress that presents us with the gift that presents a dilemma. You see.....actually WE see a minute pin prick of a light that seems to be presenting itself at the end of that ever so distant abyss of a tunnel. We still have no idea when, but we are beginning to grasp the hope that they will actually be coming home at some point. (A few days ago we had thought that it might possibly happen for one of the boys by the beginning of October......then the phrase was used "well hopefully they'll be home for Thanksgiving:)......THANKSGIVING???? What happened to Halloween??? Thanksgiving???? who knows......all I know is that if my two little heroes are still in the NICU at Halloween, then they will be completely adored because we will be dressing them up in the cutest damn outfits ever and they'll be doing reverse trick or treating!!!! giving out candy to all the cute nurses!!!)
So the gift that is presenting itself is that of the hopeful reality of the boys coming home at some point.......so how is that a dilemma you ask??? Great question!!!! And as all good teachers do, let me answer it for you in as long and drawn out of a manner as I can. You see, from a very early point in our relationship Heather and I have had conversations about how our family would develop. We have always known that we would try and keep Heather out of work for a few months after the birth of a baby.....longer than six weeks, but that she would be going back to work. That would present us with the dilemma that is very common place in our culture today......how to provide child care for our most precious possession....in this case possession (s). Heather would drop them off on her way to work (she starts later in the morning that I do) and I would pick them up as soon as I could so as not to leave them anywhere any longer than we had to. We were aware of the financial impact and have planned accordingly. We were confident of our ability to manage the logistics. This is a dilemma people deal with all the time and we, too, would be successful.......that is until we were blessed with Tyler and Parker.....you see these beautiful baby boys are special in so many ways......the challenging special aspect that has thrown everything out of whack is the fact that both boys have chronic lung disease. Okay, so we knew that.....we knew they would struggle for several years, but could "develop" their way out of the disease.......however, we didn't know about two wrinkles that accompany the disease. The first is the common cold/flu. Babies get sick.....they get better......and this helps them develop their immune system......the problem is.....when micro preemies with chronic lung disease get a little cold it has a high probability of turning into pneumonia very quickly and in a very serious manner......so much so that they wind up back in the hospital in ICU. We have been inundated with information about how harmful and potentially deadly a simple cold can be to a baby with chronic lung disease......no matter how clean the facility......a child care center by definition has multiple babies coming and going creating a germ infested incubator awaiting underdeveloped little lungs. The second problem is RSV or Respiratory Syncytial Virus. This is a very deadly virus that the boys are highly susceptible to. Two babies in the NICU already have contracted it in the NICU's sterile environment.....imagine how quickly the boys could contract it in a child care facility that services large numbers of babies. We are investigating in home care, but are honestly petrified due to the horror stories you hear all the time of neglect and abuse that goes on once the parents are out of sight. This is the current dilemma we are facing. Heather's work has been fantastic through all of this and continues to work with her on her leave to be with the boys through this tying time.....so we aren't in panic and will continue to research a solution......it is just another hurdle to make us stronger.