My First Step

This is my first step outside the loving cocoon of my immediate family and Samuel's competent healthcare professionals. Beyond this very small group of individuals, I've become a complete hermit, unable to articulate my conflicting feelings to even my closest friends. I keep waiting, hoping I'll have a better grasp on my emotions, the reality of my current life, and have everything tied up in a neat little bow before reaching out. These past three weeks have been by far the most overwhelming and emotional of my life. I have felt disbelief, terror, panic, joy, guilt and gratitude, often all in the span of a single hour. I've been indignant with anger, smothered by guilt, overcome with happiness. I struggle to silence the questions that gnaw at the pit of my stomach. Why did this happen? Could I have prevented it? Will our life ever be "normal" again? My brain knows that this is just a short blip compared to the course of our lives, but it feels endless right now. I am just so very tired. Tired of having to choose which of my children to be with, tired of always being away from one of my babies, tired of feeling so helpless and unprepared.

Despite all this, I have so much to be grateful for. Grateful for a beautiful baby boy who takes my breath away with his sweet squeaks and sighs as we snuggle in the NICU. Grateful for a joyful and brave little girl who makes me smile every time I see her. Grateful for a selfless and loving family who have sacrificed their own lives to take care of us during this time of crisis. Grateful for the thoughts, prayers, cards, messages and emails from so many friends and family members sending us love and support.

Today was one of the brighter days. Samuel was visibly stronger, more alert, aware and hungry. His weight is up to 4lb 7 oz, which is a 3 oz gain from yesterday! Eleanora, who has been sick with a fever for the past several days, seems to have turned a corner and is back to her usual busy self.

In order for Samuel to come home, he must meet three criteria for discharge. Any day we move closer to meeting these three goals is a good one. Samuel must:

1. Regulate his body temperature outside of the isolette.

Samuel has this one nailed. He has been in a open-air isolette for nearly a week and his temps have been perfect.

2. Require no breathing support, and have no apneas (stop breathing) or bradycardias (heartrate drops) for 5 days.

Today Samuel was taken off caffeine (used to stimulate breathing) because he has had no apneas for several days! He is still on oxygen via a nasal cannula. His oxygen level at 4:00 pm today (which fluctuates hour by hour according to his vital signs) was 28%. Our goal is room air, which is 21%.

3. Consume all feedings without feeding tube.

We are attempting to nurse during 3-4 feedings a day, and progress is painfully slow. A full feeding is 10 minutes, and our all time record was 4 minutes today. We've been told this is very normal for a preemie, and that most don't figure out how to suck-swallow-breathe until 35 weeks, and boys are even slower (boo!). It's hard not to feel frustrated and discouraged on the days Samuel shows no interest or is too tired to nurse (yesterday was one of those days).

Obviously, we still have some major hurdles to overcome before Samuel is home. No one can tell us how long this will take, it is entirely up to Samuel. In the meantime, we wait and pray and try (and I usually fail) to be patient.

And to those who have sent phone messages, emails, and cards, thank you. I apologize that I haven't responded to any of you, but please know your support and love mean the world to me. Thank you.

Love,

Kara