Tuesday, June 28, 2011

Wrestling Crocodiles and Fighting Bears

Mac turned one month old on Wednesday.  Thirty days old and thirty weeks gestation.  Yesterday, when we went to see him, there was a noticeable difference in his size.  Because we see him everyday, it is hard to notice sometimes, but every once in a while we catch it and are amazed by how he has changed.  He's bigger and stronger. Linda the amazing nurse tells us it is from wrestling crocodiles and fighting bears at night.

When he was born, he had almost no fat (so he had no butt cheeks...it was hilarious) and his skin was so papery thin, he was brick red because his blood was so visible.  His head was still very mushy, and his eyes were fused.  He looked like an adorable little alien baby. 

Jon's ring fit on his perfect little foot.

I had never seen such a small baby.  But then, I spent every day with him, and suddenly, I didn't see the tubes and wires anymore and instead of him looking small, all other babies started to look obscenely large.

Slowly, his eyes opened and he started looking more human. His skin got flaky, and then came back much thicker and, well, skin like.  He has always had as much hair as Fabio though, good grief; look at that mop.

In the last week, though, he looks downright babyish to me.  His cheeks are filling out (both sets!),  he looks longer in the isolette, and he is more often alert and interacts more.  It really is remarkable how much he has changed in just 30 days.

The last week was eventful.  I already talked about his switch to the conventional ventilator, and he has done remarkably well on that.  After a week though, they were still unable to get his vent settings weaned down and he was still producing a ton of secretions, so his lungs continued to be really cloudy, and are starting to become scarred as a result of the inflammation, so we started discussing the use of dexamethasone again.  The difference was, this time the idea was to use it to extubate, as opposed to using it as a treatment for Chronic Lung Disease.  I had also had several discussions with other doctors about how it is used here and the differences in protocol between here and the studies I had read, and was feeling more comfortable with it's use.  They use smaller doses and start when the babies are older, which decreases the risk of developmental disorders.  They started it on Friday and he has done really well on it.  His vent settings have come consistently down.  We're hoping that we can switch him to the CPAP (like what people who have sleep apnea wear) on Friday and get rid of that tube so his lungs can start to heal, and so I can see his cute mouth.  This is a pretty big step and we are pretty excited, so keep fingers crossed that he responds well.

The other thing that happened this last week is that he decided he had had enough of his tube and extubated himself.

Ok, so that isn't quite what happened.  What actually happened is that he got some fluid in his tube while I was holding him as a result of some medicine they had given to thin the secretions.  He waterboarded himself and, in the process of freaking out (who wouldn't), he did a pushup with his super micropreemie strength and pulled the tube out of his wind pipe.  This led to several minutes of bluish grey skin, resuscitation, and panic among family members (mom and me) and determined amazingness among the respiratory therapist and nurse (go Pam and Val!).

Makes you realize (again) how fragile this life is, not just for these little ones, but for all of us.  So, we revel in the beauty around us, love as much as we can, forgive, enjoy the time we've been given, and eat dessert first.

Oh, and express gratitude.  I hope you all know how aware of and grateful we are for your prayers and love and support.  We couldn't ask for better friends and family.  Or strangers, for that matter...we know you're out there lurking and following our story through mutual friends. I hope our story brings you hope and you can share our joy.  That is part of what this life is about, after all.


  1. Every time I read your post I cry! You have got to be one of the strongest people I know. Your little boy is quite the fighter. He is an amazing little guy. My thoughts and prayers are with you constantly! Keep growing little Mac!

  2. Leah Beah :) as I'm reading I'm laughing then I'm crying then I'm gasping...! And around and around again! McKell's fan club is praying he does well on his new medicine and gets to snuggle his mama lots :) we love you all and are still praying our guts out for the guy with the cutest little chicken legs we've ever seen!! ;)

  3. So amazing! Go Mac Go! Leah and Jon you are so awesome keep up the great work!

  4. We think about you all the time and love you guys so much! We are glad he is growing and doing better each day! What a sweet little guy!

  5. you, Jon, and Mac are amazing people, I am grateful to be among your friends. Keep up the good work little man!

  6. Oh wow, what a touching post! I am grateful you are sharing it! He is such a strong fighter!! I love the pictures, he is getting even cuter every day (although sometimes you think it just isn't possible to get any cuter)!
    We can't wait to get back, Emma makes sure everyone prayes for him, ALL the time, cause she just can't wait for him to be big enough to come home and for her to be able to meet him (she is a huge fan of his)
    I am just grateful he is doing better, getting stronger and bigger every day and that he has you there rooting, caring and advocating for him. You are an amazing mom!!!
    Sending lots of love!