Month One: Training Camp

Welcome to our new blog! Let me just start with this confession: I am not technically savvy. And I have limited patience.  “Limited” as in on a scale of 1-10 with 10 being the patience of a middle school teacher, I am somewhere around 2.3 . So, this blog will be a learning process-both with it’s content and it’s look and feel. Take a look around, hopefully as time goes by it will get better looking. I also have no idea how often I’ll post-we’ll just see how it goes! And I’ll try not to post about mundane details of nothingness. I’ll probably mostly post about Tucker but the possibility exists that I could do a whole post about brownies. So..here we go. Take one.

After one month at home we are definitely in a routine with the little guy. Our nights are interesting as we don’t feel comfortable sleeping while he’s still having occasional bradys (he’s had 5 total since we’ve been home). So, Darrin and I take 3 hour shifts at night-one of us up with him in the Tucker Compound, while the other one sleeps. The Tucker Compound is our bonus room-we needed a central place for his oxygen converter box which is bulky and stationary. We have a pack n play, bouncy seat, swing, mini fridge for the milk (and Diet Dr Peppers), snacks (nary a fruit in sight-contents of snack basket is mostly cookies and chips) and of course a TV, rocker and recliner. It’s pretty comfy actually and is right next to our room. But it means our sleep is pretty choppy. At best. We’ll see how long we can keep this sleep routine going. SOMEbody in this family unit gets pretty cranky without sleep. Initials D.H. 🙂

Tucker has had a good week-if you read my Caringbridge post, you know his ROP has regressed to Stage Zero, which is awesome news. We are going on Monday to do a infant apnea study with him. It is a 24 hour study that will happen at Levine Children’s Hospital. Essentially, they’ll hook T-man up to a bunch of monitors to learn about his breathing patterns. He will probably have a chest xray as well to check his lungs.

The study will tell us if Tucker is having apnea/brady events because of a central nervous system issue (his brain’s not telling him to breathe) or if there’s another issue like reflux or airway obstruction of some kind. Baby’s who are on the ventilator for any amount of time can have scarring in their throats/airway which can cause a little obstruction. The study should be very minimally invasive for Tucker-he’ll just have more leads attached to him than normal. So, we’re hoping that the study will give us a little more information about his breathing. His lung doctor was slightly concerned with his fast breathing rates when we went to see him 2 weeks ago, so we’ll see if they find any reason for that.

Pray that the study would go well and that it would give us and the doctor some good information about his breathing. Also pray that there isn’t a central nervous system issue that is interrupting his breathing. This is the only doctor appointment for us this week-hallelujah.

As we have one month of training camp under our belts we are realizing that getting him home was only part of the battle. This first year is going to be hard. No way around it. We have a lot of development milestones he needs to hit. We have a LOT of doctor’s appointments. We have to keep him healthy. We have a steep learning curve. But. He’s home. We’re together. And that makes us unbelievably happy. So here’s to Year One. We’re suited up and ready.