Friday morning

He seemed to have a good night. We were not able to be with him as much because we both forced ourselves to sleep after the tough go the night before. It is hard to be away from him even when we know it is best for him that we are. Before bed, Robyn and I hung out with him together for a good while. It was nice to have some quiet family time. Robyn was able to dip her finger in some breastmilk and have him start to get the feeling of what the real thing will be like. I'm pretty sure I saw him smile. But we are still a few days from the first attempts at the breast and he is still showing that it will not be a simple process.
In an earlier post, I spelled the name of the neonatologist incorrectly. Just in case some of you pray REALLY specifically and spell the names for God, the correct spelling is "Marty McCaffrey" - I would hate for some farmer in Iowa named Marty McAffery to be working away in his fields and suddenly be overwhelmed with the feeling that he needed to check Finley's protein levels.
Below is an email that we received from a friend of a friend, Dave Harvey. They went through a remarkably similar situation with their son 8 months ago. I was originally going to post it when I got it a couple of days ago, but I hesitated for some reason. My guess is that I am very scared to appear at all presumptuous that Finley's story will have as beautiful an outcome as Elliot's (we already know from the MRI that the cause of Finley's seizures is not the same as the cause of Elliot's). But Dave's wonderfully written note brought us such peace, that I want to share it with Finley's Army (that's you!). Thank you, Dave, for allowing us to share it.
I will try to add another post after rounds this morning.
Love,
Fin and Fam

hi kevin,

i received an email from jeff bloom yesterday morning pointing me in the direction of your blog and i read it right away. to be honest, it was pretty overwhelming and overwhelmingly similar to our situation. it brought everything back with a sickening clarity. i know you by name only and my heart literally aches for you and your wife.

i remember everything very much as you've articulated it. the "is he going to die?" question was very evocative of one of the first conversations we had with the neonatologist. i'm glad to hear the news of the MRI. what i remember most about those first few days was just such a deeply intense fear of the unknown and a constant cannonball in my stomach. we had consults with every known specialist under the sun as they searched for every possibility to explain the seizures. each time some other possibility was explored it just opened up another avenue of fear and long-term consequence in my mind, more tests, and a new cycle of drugs. my wife, who's a physician herself, really never went down the hypothetical path with elliot: she just refused to believe that it woudn't work out. do whatever you can to help robyn sleep as often as possible. you have no idea how important this will become when the adrenaline of the immediate situation begins to wane. you will both need to be strong and prepared for this to last a while.

also, and this is very, very hard; try not to think about the future too much. i really struggled with this but it's totally unproductive. all you can do right now is focus on what the doctors are telling you and being there in the small, small moments you get with finley. while he may not actually be awake there is no denying that he needs your touch and your voice and some comfort from the mess he's in. i remember the thrill i got from being able to stroke elliot's hand through the little hole in the incubator - i understand just how painful it is for you two to not be able to touch him whenever you want. being in that situation made us realize that there are so many seemingly small, insignificant things that people take for granted with their babies. like the joy of a cry, or changing a diaper, or rocking them. i just remember so strongly craving anything "normal". when elliot was coming out of the phenobarbital haze we were dying to hear him cry. the nurses would chuckle with us saying that one day we might regret that wish but such a small thing meant so much and his cry was the most beautiful sound we had ever heard when it eventually came.

as ben may have told you, it ended up being a brain hemorrhage for our little guy that likely occurred in-utero but that will never be known for certain. he spent 10 long, long days in the NICU and couldn't properly breastfeed until he was about 6 weeks old as he suffered from pressure on his brain that essentially disorganized his thoughts during that time. it will never cease to amaze me how both he and my wife never gave up no matter how stressful and hopeless it may have seemed. incredibly, and this is the most important part of this email, he's lying downstairs in his crib right now about to turn 8 months old, the happiest baby i've ever known. he wasn't entirely out of the woods (in terms of future implications) until about 3 weeks ago when we had our final follow-up with the neurosurgeon and nothing more is required. our little guy managed to escape entirely unscathed from major seizures, the intubation, the MRIs, the CT scans, the feeding tube, the lines inserted everywhere in his body, the endless cycle of drugs, the inability to be held for almost his first two weeks of life, and the tortuous struggles with breasfeeding once he did wake up. there is hope man. i know there may still be a long way to go for you and your family, but please know that nothing's impossible.

you will live with this forever. i still cry randomly when i'm holding him thinking of what he went through with a mix of sadness for him and gratitude. i stopped trying to find a greater purpose in the experience long ago, but i can say for certain that it has served to make both my wife and i so grateful for him just being alive. when you walk that close to the edge, as you are right now, you learn to seriously "see" things differently.

i know from experience that it isn't going to help you to tell you that everything's going to work out fine. no one has the right to say that to you. what i can encourage you to do is just see finley for the unique child that he is and love him no matter where this may lead your family. he will be who he will be and the best news of all is that he's going to live and you will eventually be able to hold him and feed him and love him.

i don't know if any of this helps, but our family is praying for yours.

dave.