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Charley. I wonder sometimes how he’ll feel knowing he lost two brothers without ever really getting to know them.

Charley is 20 months now – he’ll be two in March. He’s come a long way, and takes his time getting where he’d like to be. For the first 192 days of his life he was hooked up to monitors and machines in the NICU, living in a room with a number on the wall and doctors doing rounds every day. He had a bunch of surgeries, including multiple brain surgeries. He had a second mom named Casey – his primary nurse the entire time. We still keep in touch with her. He spent almost a year on oxygen, even at home (man are we glad that loud, loud, loud machine is gone – and so is Charley). He still eats through a tube – which we’ve actually gotten used to, and sometimes I think, “great, one of these days we’re gonna have to say ‘eat your beans, Charley, come on’ – ha.”. 🙂

I guess a good way to explain what “good” means when I say how Charley is doing is to go through a typical day with the little man. Charley wakes up around 9 in the morning (which is great for us) after getting a feed pumped into his G-tube (pics of that nifty thing later in the post) 12 hours overnight. Babies normally need to be burped, but Charley is “vented.” Burping a kid is simply patting them on the back in hopes the air trapped in their stomach will come up. For Charley it’s a bit different. First we disconnect his pump and pump line from his G-tube. Because Charley has a G-tube, we actually take a syringe of 10ml of water or so (oh, our life is very ml based, ha – 3 mls of this, 150mls of that, etc) and push it into his G-tube. Then, we pull back on it and both air and formula come back. We keep repeating this until all the air is out (usually anywhere from 5ml to 50ml of air), and that’s how you vent a baby. 🙂

After he’s vented, we get Charley up and change his diaper just like any kid waking up. Dress him for the day, and bring him to the living room. Even after being vented, Charley still has a pretty active gag reflex, and so we keep him upright and not bouncing or moving a ton for the first 20 minutes or so. Then he gets to play! Charley still doesn’t quite crawl – he can scoot backwards pretty well and side to side, and just the last couple weeks can move forwards as well, although he uses his arms more. Charley is still working on some of his muscle tone since he was born so early and spent a lot of time laying in the NICU. As a result of this it can be difficult for him to stand straight (he sticks out his butt to prove he’s bootylicious), and a lot of other minor things (when he claps, he only moves one arm – the other stays there waiting for it’s mid-five).

At 11 Charley gets Prevacid via the G-tube to help with reflux, and twice a week he’ll also have his speech therapist come in, who has nothing to do with speech, ha. She works with Charley helping him get used to tasting (we’re talking very tiny bites of baby food), used to smelling food, touching it, and she exercises his mouth. Once it’s been this long without eating, you have to teach someone to eat from scratch. After speech, the physical therapist comes. She works with Charley to make sure he’s working the muscles he has issues using, stretches him in ways he should be able to but doesn’t do – gets him used to correct movement.

We take a lot from the speech and physical therapist’s instruction, and try to make sure what they do is also getting done daily for Charley – practice, practice, practice. At 1 Charley naps, again with a feed running through his pump (it sits on a medical pole and pushes the formula through the tube right into Charley’s stomach). He gets a feed again at 6 while he’s awake, and another at 9 when he goes to bed (that feed goes for 12 hours at a slower pace). Our kitchen counter space is covered in tubes, syringes, and formula bottles.

Charley will wake up by 3, and hang out playing and scooting around the floor for a bit. Sometimes we’ll go on a walk with him and Jack (our boxer) around this time.

At 7pm the nurse arrives (Charley’s doing so much better we’re down from 24 hour nursing to only 8 hours a day – they stay from 7pm to 3am), and helps with therapy, bathing, and setting up the night feed. She also will vent Charley, change his diaper, and refill his feed throughout the night. Every night I wake up at 3am and let the nurse out (they are required to “give report” which is lame – it’s usually just “he’s slept fine, please sign” – something which could totally be done the next day, with a knock on our door if there IS an issue).  Aside from a couple times when we travel, I haven’t slept through the night in a year.

Charley loves bath time! Every day at 8 or 8:30 is bath time, and he has a blast. 🙂 By 9 he’s hooked up for his evening feed, and hits the rack for a solid 12 hours. YES.

The cheeks on Charley are the kind an aunt would grip and never let go of, ha. Babies usually lose these cute cheeks somewhere in their second year, as they begin eating more and their jaw is used. Since Charley doesn’t eat, his jaw doesn’t do much right now – leaving all that cute baby fat in his cheeks. We’re also working with an opthamologist who sees Charley about his eye. Both eyes have great vision, but also due to the premature birth, his right eye is very lazy (he wears an eye patch 3-4 hours a day in hopes to adjust this). Even with the patch, the doctor seems to think sometime in 2012 he’ll need surgery to correct this, where they actually surgically strengthen the eye on one side, and weaken it on the other (muscle, I mean, not vision). This straightens out his eye.

All of this has made Charley a very independent guy. He’s becoming a little more used to cuddling or hugging, which is nice, but never really was into that. He liked being held, but didn’t melt onto you like you expect a baby to. Eye contact is tougher for him. So far his life has been a collection of issues he’s been overcoming quickly, slowly, constantly. I’ve said before – most babies spend their first year laughing, learning to crawl, eat, etc. Charley spent his first year learning to breathe. He’s a tough cookie, and we’re looking forward to see the boy and man he becomes. You can see him getting stronger all the time – and he’s already covered in scars which I’m sure chicks will dig from all his surgeries in the NICU and first year. Doctors seem to think by the time he’s 3 or so, he should be developmentally caught up with “normal” – as if anyone in our family has been that. 😉

At times it can be difficult with Charley to see the baby boy behind the collection of medical issues. Lately, though, he’s been laughing more, smiling more, and becoming more mobile – he’s strong, and the more he overcomes his medical stuff, the more we see his personality and the kid himself. Abby is over a lot as our official “please watch our kid so we can get dinner out!” lady, and seems as much a part of our family as he is. She watched Ezra often during treatment, and helps out a ton now as well. We think she’s great.

Well – there’s some insight into Life With Charley. Thanksgiving is coming soon…

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  1. Charley is a darling little boy! He is a gift from god… He will do great once he can get past these few issues however he is doing so good for what he went through! And those little cheeks! I could kiss them all day! I love kissing babies!

    I am sure he will wonder what his brothers would have been like once he is old enough to know about everything. Hopefully everything that you have been through won’t scare you off from having Charley a little brother or sister to play with someday.

    Your life seems structured that is for sure however your doing a great job as usual! You and Robyn are doing such a great job….. god knows you two are special people!

    Give little Charley a big kiss for me on those cute little cheeks!

  2. I am sending prayers for your family and will pray that Charley is able to eat on his own some day and is able to do what every other child can. And if he has to have surgery that it goes well for him and he has a fast recovery! God bless all of you!

  3. what a handsome guy! And such a sharp dresser it appears! I came across your blog through your organization, and am without words for your families strength, courage, and commitment to family. Charley is so incredibly lucky to have parents who are filled with as much love as the two of you are. I pray that your family continues to gain peace and comfort…and hope the two of you get a little rest!

  4. My daughter has a brain condition (a Chiari Malformation) that made it difficult for her to eat and keep down most foods from shortly after birth. She had a very restricted diet and limited eating opportunities until she had surgery at 21 months old. Although her condition was quite different (and not as challenging) as Charley’s, I wanted you to know that now, at age 5, she is finally pretty much a “good eater,” eating a hotdog in a bun for the first time just the other day! She tries samples of food at the grocery store and loves Tootsie Rolls.

    Charley is lucky to have you. And some day, you’ll be past the most difficult of the medical mumbo jumbo, and hopefully he too will be eating hot dogs and tootsie rolls. Best wishes to you.

  5. Praying daily for Charley’s progress. Will pray that he gets to the “developmentally normal” point sooner. Thanks for sharing his progress. He’s a precious child.

  6. Thank you so much for sharing this Kyle! There is so much science that kept this little guy alive, all the Doctor’s did… but then I think of his amazing will to live & fight through things we will never experience or understand. When I think about this I am blown away with what a miracle baby he is! I can’t wait to hear of his continued progress! Thanks again for sharing it means so much!

  7. I was so happy to read a Charley update! He is too cute! It really must be tough to do all of that, and I truly admire you two, even if now it just seems like daily life to you. I hope to read more updates soon, and I hope all of you have a wonderful, happy, healthy New Year! (:

  8. that matter….but I wont give up. I know when the time is right it will happen.
    I’m so thankful you still have some help….sure that makes a big difference for you & Robyn
    Thinking of you all so very iften