Life After NICU

‘Thank You’ Will Never Be Enough

We’re always thankful for James. Not a day goes by that I’m not cognizant of the fact that our lives could be very different. That reality is clearer than ever now, as I’ve been researching prematurity and viability for a personal project. I expected to find controversy and a range of opinions regarding viability of the earliest micro preemies. I have not been disappointed. Controversy exists over gestational age limits among doctors and nurse alike, and recommendations can vary widely. Some studies recommend comfort care for all babies born under 24 weeks gestation, and others recommend life saving measures as early as 22 weeks if the infant shows signs of survival. Being born at the right hospital can make all the difference in the world! It certainly did for James.

I’m thankful to see that some studies are recommending life saving measures at least be considered as early as 22 weeks gestation. This is the reason I share James’ story every chance I get. Other babies deserve the chance he was given. Families deserve a chance to fight for their babies. What they ultimately choose is their personal decision, but they deserve a chance, a discussion with the doctor, at least a possibility. I know that I have a skewed view about the outcomes of micro preemies, and I know I’m not objective. I can’t be. My fight comes from my knowledge and my experience. Other people’s journeys and experiences have shaped their views differently, and I respect that.

Doctors and nurses see much more than I ever will. They see worst case scenarios played out day after day. I know a limit exists. There absolutely are some babies who simply are born too soon. But that gray zone of viability, those weeks of uncertainty where life is possible, those discussions now need to include babies born under 23 weeks gestation. More and more babies born under 23 weeks are surviving and thriving. It is happening now, usually, by error or over-sight, just like it did for James. Think of the lives that could be saved when it is done with purpose.

We say it all the time, but we truly are incredibly thankful for James. He is doing awesome, as are several other 23-weekers who were in the NICU with him, and many others who we’ve met since. They are strong, resilient, smart, and some of the happiest kiddos I know. I definitely don’t take what James has been through lightly. If I could change the circumstances surrounding his birth and his NICU stay, I would. I would give anything to take away the pain he’s had to endure and the challenges he faces every day. I would do anything at all, except give up on him. Sadly, that is being recommended to parents more often than not when their baby is born as early as James.

We were fortunate. Somehow, we didn’t have to try to convince doctors that our son was worth fighting for. We didn’t have to convince them that he could survive if given a chance. They saved him because we said, “Yes, we want you to try.”

James, seven minutes old.

James, seven minutes old.

This is what they saw, and they still tried.

I cannot put into words how thankful we are that James was born exactly where he was. He had the perfect team of doctors, nurses, and therapists taking care of him throughout his NICU stay. I’ve always felt that way, but the more I read about micro preemies across the US and throughout the world, the more I am absolutely convinced of that. My heart breaks for the families and babies who are not as fortunate. I will keep telling James’ story for them, with the hope of opening more minds to these amazing babies born on the edge of viability.

Thank you is not nearly enough, but it is the best I can do right now. Thank you to each doctor, nurse, and therapist who worked to save James. Thank you for respecting our decision to try to save our son. Thank you for doing everything in your  power to give him a fighting chance. Thank you for never, ever giving up on him.

Thank you for giving us countless moments like this:

And this:

My Silly Guy
And this:

Thank you.

11 thoughts on “‘Thank You’ Will Never Be Enough

  1. Again, you amaze me! Thank you for your words and honesty. Happy Thanksgiving! I am thankful that you were my favorite babysitter when I was young. Guiding Light and The Young and the Restless always reminds me of our summer together. Remember when my sister warmed up noodles on the stove? Always your fan.

    • Thanks Rachel, you are so sweet! We had fun that summer. I was actually just thinking about Kristin heating up the noodles yesterday when I make Mac & Cheese for work – I believe that is what she was heating up. Yikes! Thanks for keeping up with James. It means so much to me! Hope you and your family have a wonderful Thanksgiving!

  2. Wonderful message to others who need hope. Alison you are a great and thoughtful person for keeping James blog going through the years. Very moving many times. Thank you.
    Susan K.

  3. How incredible. I often think about the day we were asked about resuscitation, what a crushing blow it was to even realize what they were asking us, and I often felt grateful at least that we had made it to 25 weeks and were being given the choice. I cannot even properly imagine what must have been running through your minds at 22+6, given what the statistics and literature usually say about babies born that early (though I bet that seeing your amazing boy more than makes up for it all). I’m glad that you had so much support.

    • Thank you. Sometimes looking back feels even harder than living through it. I was scared, but I didn’t have a true sense of how critical the situation was. I’m just thankful we were in the right place at the right time.

  4. Pingback: A blog called 22w6d that almost perfectly reflects our experience… | They don't cry

  5. Reblogged this on They don't cry and commented:
    This baby was born at exactly the same gestational age as our Gabriel, 22w6d. It’s amazing how much in this article relates to things we’ve been through!

  6. Pingback: World Prematurity Awareness Day 2016 | 22w6d

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