Saturday, May 9, 2009


The other day,  we were at Ryan's bedside during rounds.  The surgeons were gathered around him and there was a new person at rounds that hadn't met Ryan before, so the surgical fellow asked one of the residents to give a description of Ryan before they give the updates on him for the day...
Resident: basically, we're managing his feeds to see what he can tolerate
Fellow: no, I mean, tell us his whole story
Resident: he had a bowel resection and is now awaiting reanastamosis.
Fellow: no. Ryan is a former 27 week gestational age preemie, twin A of a di/di twin pregnancy,  who was doing well, tolerating all his feeds.  He got NEC at about 3 1/2 weeks of life and was transferred here for surgical evaluation.  We did an ex lap and he ended up with a 50% small bowel resection and 50% large bowel resection on 3-19-09.  He is now on continuous ng feeds with Elecare and is expected to undergo reanastamosis within the next few weeks.  That is Ryan, in a nutshell (looks at mom and dad and grins).

After this description of Ryan, i said something stupid like "he's also a really sweet baby."  I guess they're the medical people, but I would not say that Ryan's surgical course describes him totally.  So, let me add a little more to the Fellow's description of my little Ryan.

Ryan is a fighter--he has fought more and fought harder in his short 10 weeks on this earth than most people have to fight in a lifetime.  He has overcome so many complications of prematurity and is now in for the long haul with this short bowel stuff--his resilience surprises me.  Despite all of this, he is the most content baby one could imagine.  His little pleasant personality was apparent to me from the moment I met him--even before he was born, he was just quiet--would make these slow, soft, rolling movements (as opposed to his sister who seemed to be trying to drill her way out via my belly button, but this isn't about her).  He is often wide awake, looking around with his big beautiful eyes.  Every nurse that's cared for him and even the doctors have commented to me that he is so nice to care for because he is so mellow--not sleepy, not lethargic, just calm and peaceful.  he is a cuddler--when i hold him, he burrows his little head into me and snuggles in for a nap.  he loves a nice scalp massage.  he loves eye contact and will engage with me for a very long time.  when he is quietly alert in his bed, he looks so contemplative, like he is trying to figure out the meaning of life or some other great mystery--my friend Petra is convinced he is destined for greatness and I think she's right.
he's strong physically--the physical therapist told me that "gut babies" like Ryan, who spend months on their backs, have a hard time getting neck muscle strength built and usually are pretty weak and developmentally behind--well, Ryan is much stronger than expected--he picks his head up, holds it up and turns it from side to side with ease.  he pushes up with his arms when he is laying on my chest.  we were also told that he might not take to a bottle due to the tube feeds, but he loves his bottle and begs for it all the time by chomping on his hands.   he sucks his thumb, loves his pacifier and loves his bottle--he even sucks his medication down in a bottle.  he makes it hard each day not to scoop him up and bring him home.  he is our son, a gift from God, the baby we prayed so hard for. he is  a brother, a grandson, a nephew.  And he is loved.

that, my friends, is Ryan, in a nutshell.


  1. Crying tears of joy...thank you for painting a clear picture of Ryan.

    Happy Mother's Day to you.


  2. And he and Nora are the youngest little friends that most of have. Even though we have not met Nora and Ryan physically. We always feel a close bond with one for whom we have prayed so fervently! With much love, The Florida Botts

  3. And this, my dear Jessica, is the best Mother's Day gift that you could ever give me!
    Thank you so very much!

    Love, Mom

  4. he IS the sweetest. so strong but cuddly too. i've had the privilege of holding him and thank God that he is here with us.

  5. Almost forgot: Ryan is also a great grandson!

  6. Dear Jessica, Happy Mothers Day! Thanks for sharing your loving thoughts
    of our dear great grandson, Ryan. He is indeed, a sweet, sweet, baby boy!
    We hold Ryan in our hearts and prayers. Looking forward to seeing you and your dear family soon! Love&Hugs Grandma Joanie
    & Grandpa Buddy

  7. that brought tears to my a "medical person" i know how easy it is to describe a person by their condition, but that is why it is SO important that you guys as his family, parents, protectors, are there to speak up when us "medical people" get wrapped up in medical jargon and forget the precious lives of our patients. praying for you all during this journey. Jen (amy's friend)

  8. What a beautiful post! You brought tears of strong emotion to my eyes, how medical types do often tend to focus on the person as being a summary of their case history. Even still, I'm impressed that the fellow pushed for something more complete for the case history! To me, saying that he's also a very sweet baby is hardly 'stupid'. They need to hear that, to see the baby behind the surgeries!

    I love the picture you paint of your son.

    Melanie (from BBCFeb06)