My son was born on June 24th. The first hour things were perfect.....or so we thought. His "APGAR" score was great and he was breathing fine and so on. After spending about 30 minutes with my wife in the Recovery Room I went back to the nursery. Before I even got in the door I saw a Doctor and three nurses gathered around....this can't be good. So started a long couple of weeks of worry and patience.
For our purposes we'll call him "Boesch". Boesch started have some unexplained movements shortly after I left. Not quite "convulsions"...not quite "seizures"....they were calling it "posturing"...he also appeared to be having trouble breathing for short periods. They took him to the NICU. I had to go back and pull the rug out from under my wife that things that were perfect moments ago no longer were.
I went to the NICU...the "posturing" had gotten worse. The Doctor, we'll call her Dr. All Business, was now worried about seizures and a brain bleed so ordered a CT scan. Boesch had to be intubated for this. Not good. He would end up on the vent for 7 days and with a good dose of an anti-seizure med that kept him pretty much out of it the majority of the time. A quite still, silent baby is not a happy sight.
Dr. All Business was off. She was replaced, thankfully for only a short time, by someone we'll call "Dr. FAB" (Flatline Automaton B#*!H). Dr. FAB missed out on "bedside manor" training. Her sole contribution seemed to be scaring the bejeezus out of my wife (indeed she scared us enough that we performed an emergency Baptism ourselves, just in case..a wrenching thing to resort to). There were very few people who weren't great to work at the hospital...FAB was an exception even though I'm sure her work with Boesch was by the book and in his best interest. Dr. FAB was replaced by Dr. Taj Mahal and then Dr. Irish-name. Both taking the time to explain things thoroughly to us.
Boesch kept getting tests done. CT scan....normal. MRI....normal. EEG #1....normal. 24-hr EEG....normal. Still some of the "posturing" continued but it was changing to short jerky movements of his arms. We met with two neurologists....both great people. Dr. Al-whosy-whatsit (my wife's name for him, she could not remember it....she was medicated after all post-surgery!) and Dr. Kindness, who the nurses were all excited was working with us. (a good sign...the nurses know what's up) They came to us with the most heartening possibility. Unexplained movements in newborns happen...and sometimes finding no glaring cause can be a good thing as then brain development in newborns takes over. They were also sending EEG results elsewhere for review in case they missed something. A neuro-guy in Minnesota was looking...(evidently there are more neurologists per square mile in MN than anywhere on Earth...who knew?) and he saw nothing.
So the long days in the hospital were wearing on.....late, late nights. Taking my wife home w/o Boesch was a tough day for us. However something was happening...the "posturing" was lessening in frequency. The new goal was to ween him off the anti-seizure med and see what happened. This was a long process as this drug lingers in the system for a long while.
The support of folks in Iowa is amazing. We haven't lived here long. Didn't know a soul when we moved here. But three people volunteered to mow my lawn, a dozen or more people wanted to drop meals off for us, more people were happy to watch our 6-yr old daughter than we could possibly use, and two women who work w/me asked to clean our house. 800+ users checked Boesch's website for updates on his progress. Simply amazing...and thanks out to all of those folks.
The nurses working with Boesch were great. The two Tara's, Pam, Patty, Jody, and several others. Not to forget Stephanie, who became a lifeline for my wife....they clicked and Stephanie's positivity and straight forward manor was great. She and my wife share the same sense of humor..."self-deprecating but while we're at it let's deprecate others to make it even!" Special thanks to Stephanie for making things bearable. (and special thanks to the "way hot Nurse" for just being around...hey I know my kid was in the hospital and my wife was recovering from surgery, but you had to be in a coma to miss this gal)
Eating at the hospital cafeteria was a delight....well...not quite. But it wasn't bad. My wife thought I was certifiably insane for trying the "General Tso's chicken" and the "Chile-lime Tilapia". They were okay...the cheeseburger casserole was not good though.
Boesch is a trooper. The days wore on and he kept getting better. His spinal tap results came back clear. Another EEG was done once the medication was out of his system....it was normal brain activity. Yeay! Suddenly after 14 days we're going home. Amazing. All the worry, all the low moments, all the hugs, all the prayer (our Pastor needs to know when a visit is too long btw! Yeesh)....it all paid off. Boesch is home now. He's pretty darn great. He carved out a spot in our heart just by showing up....however watching him battle through being poked and prodded and hooked to nasty looking machines has made him my little hero. (there were too many milestone moments that we celebrated to recount here, like the moment he came off the vent and could make baby sounds again...the silence was a hard thing to bear over the first week) He still has work to do. Some of his muscle tone is down due to being hooked to the vent for so long and seizure-like activity causes that as well....and there are things we still have to watch for over time...so nobody is kidding themselves that we are totally out of the forest. But the doctors are optimistic and so are we. Everytime he does normal things babies do only re-inforces that optimism. So today we do normal stuff....I'm taking my daughter to the carnival (she was a study in 6-yr old patience during this time as well...she loves her little brother) today and we're taking Boesch for a walk on the walking path with the new stroller (adjustable handle for a guy my height....good buy).... (I've decided not bore you with how strong my wife has been through this...just know, she's awesome and pretty tough)
So that's where I've been the last few weeks...thanks for reading this if you went the distance. I did follow the Tigers at times throughout this...a needed distraction for an hour or two a day. I'm sure I'll contribute here some more (if its a "contribution" LOL)....we'll see how it goes.
