Wednesday, November 18, 2009

NICU Days -- Wordy(less) Wednesday

Our flaccid, newly born John Michael, just minutes old. A few minutes after this photo was taken, Doug and I were given the life-altering news... "It looks like your baby has Down syndrome." November 14, 2007

Day 5 in the NICU after John Michael was born. It took five days before I was allowed to hold him and for him to try to take 2 ounces. He kept falling asleep, so he took the rest through a tube.

A heavenly moment for me, filled with tears of love and joy and fear.

Oma Crumley (Doug's mom) holding her 5th grandchild just after I fed him his first bottle. All those wires and cords bring back some very difficult moments.

I love this photo. A sweet smile and it reminds me of how today he's always signing "more" when he's enjoying something and doesn't want it to end. Here he just had his canula removed and his cheeks are red from the tape being removed.

November 22, 2007. Thanksgiving Day! What an immense blessing to bring our baby home on Thanksgiving Day. Here, Daddy and John Michael, wearing his going home outfit, are waiting to be discharged. Doug and I were both nervous, but trusted in God's providence that all would be OK and that He knew better than we.

I so want to go back to that scared couple 2 years ago and tell them that it'll all be OK. It'll be more than OK! His siblings will adore him and more friends and wonderful people will fill their lives than they could ever imagine. I just wish I could've known all that then.

I have a new friend, Amy, expecting her first baby in early December. Her baby girl has Down syndrome and Amy has been so brave while getting to know some of us before her baby is born.

Dear Amy, I want you to know what we parents already know... It's going to be more than OK. Your baby girl is so lucky to have you and I can't wait to meet her.

OK, tears are falling now... and my Wordless Wednesday has turned into a Wordy Wednesday!

Posted by Picasa


  1. So much to be thankful for, indeed! What an amazing gift John Michael is.

    I, too, wish I could go back and erase all of the tears and worry....but it's all part of this journey.

    I love the pictures of JM as a newborn....what a beautiful baby!!

  2. Tears for me too! That was beautiful!
    And it does look like he is signing more!!!! That's so cute!
    Tell Amy congratulations from me!!! She's about to receive the best Christmas gift she's ever!

  3. how amazing to bring him home on Thanksgiving day. Great post. I wish I could go back and do it all over and not be so sad that first day.

  4. All I have to do is take one look at John Michael's face and I know I wouldn't be scared of having a baby with DS

    he is so gorgeous.

  5. Wow, such a beaituful post. I wish I could get those few days back as well knowing what I know now. What a Thanksgiving blessing to always remember. You are a beautiful person.

  6. so much to be thankful for! thank you for sharing such a beautiful post : )

  7. I have tears streaming down my face as well. What a wonderful post. What a special Thanksgiving Day!

  8. I am tearing up too!!!! "That news" is so life took me to a place I never want to be again. But it also gave me something I would never give back! Thinking of you, would love to talk! Andrea Wiley

  9. Awww! I don't think I've ever seen a newborn picture of JM. So darling. Yes, very touching post and wonderful advice to Amy.
    I feel so blessed that we didn't receive our diagnosis until three months after his birth- we were sheltered from those mixed emotions of fear and love- and were able to bond with Joaquin just like our other kids. I often wonder how different it would have been had we gotten the diagnosis at the hospital.
    I'm so happy to have walked this road with you Monica!

  10. I am not Amy, but my husband and I are expecting our first child (a daughter, Bella) in a few weeks. We learned a few months ago that she has T21 and I'm just now finding fellow bloggers who have a child with Ds. I hope you don't mind me following your blog!! :)

  11. oh Monica!! Tears falling here too! I just loved reading this story and seeing JM as an infant boy...oh my haven't our feelings changed?!? I feel just like you do-that I could go back to week 20 of my pregancy and wish I knew then what I know now. I am so excited for your friend Amy. I remember feeling so excited for Adrienne too, just before Bennett was born. You are so lucky to be able to mentor her and encourage her. Blessings to you!!

  12. Monica,

    The more I know you, the more respect and admiration I have for you and Doug. You guys are amazing. I am glad to count you among my friends.


  13. This comment has been removed by the author.

  14. Great post and so true! My husband and I always say we wish we could go back and tell ourselves how ok it's actually gonna be. And we are almost embarrassed with how devastated we were...we just didn't know how to digest it all.

    And I love the pic that looks like JM is signing "more". That was probably Jack's first sign and if he really likes ice cream or a good game of hide and seek...he'll keep putting those cute little fingers together!!! Love it : )

  15. great post, Monica!

    And like Jen, I have never seen a newborn pic of JM. He is precious.

    Those first few days are so hard to look back at. I too wish I had a time machine so I could give myself a little pep talk.

    Amy is amazing. I am so glad to know her and look forward to meeting her new baby girl :)

  16. I hope he had a wonderful birthday

  17. Beautiful words of love surrounding a beautiful boy - John Michael, who has changes more hearts in his short life than many do in a lifetime. We love you sweet boy! Kris

  18. Wow, I'M crying and think that's a beautiful post! My husband and I were just thinking about how much has changed in 7 parents, we know and understand so much more than we did the day we found out. Some of those fears have slowly melted away with time...

    Thanks for that post!

  19. Oh he was so tiny wasn't he?! Wonderful post - and I agree - it does look like he's signing more.

  20. What a beautiful post, Monica! Beautiful photos, and beautiful sentiment. I am so glad Amy (& Brittany) have sought out support and information--I think we bloggers have so much to give them, and who could resist John Michael's beautiful, sparkly blue eyes...!

  21. Great flashback post. Congrats to Amy... I'm looking forward to "meeting" her and her new baby!