Sunday, October 26, 2014

Shots shots shots!

Captain's log. It's 10 AM on a Sunday morning. Lost track of the days on the voyage.  I'm attempting to use Siri to dictate this blog post as I walk around holding Micah. I have his feeds in a backpack so that I can keep moving to prevent him from crying. Dylan is - currently - calmly watching Frozen and eating a muffin. (Wait, he just sneezed and had a snot incident.) Laura is taking a much needed nap. Actually, she just work up! Back to typing.

The four of us have been sick the past few days. Dylan got it first, then me, then Laura and Micah. Dylan seems to have passed over the peak, but Micah looks like he is just getting the worst of it. It's basically a cough, sore throat and occasional fevers...(with a gag induced vomit here and there, the usual stuff). 

With everything we've gone through up to this point... This is nothing... I wish. I'm sure every other parent that's reading this knows what we're going through. Misery. The adjective is miserable. I'm too sick and tired to have energy to help the sick kids who only have energy to cry because they're tired. We all need more sleep.  6PM yesterday was an exciting family moment: almost bed time. 

In spite of all this, I really want to post a blog because Friday was the last day Micah needed a shot for a leg clot.  Ever since coming home (9/17/14, 38 days later), we needed to give Micah two shots a day to prevent his clot in his left leg from getting worse and (hopefully) remove it. The clot came from his first cardiac catheterization, back in his first week of life. He hasn't required shots everyday, just since he was at home. Giving your sick baby a shot twice a day is just about exactly as difficult as it sounds. It's not easier than you would think or worse. Just bad, sad, fleeting yet discouraging. I am so thankful and relieved to be done with those shots. 

I know what you're thinking, isn't Micah going in for another cardiac cathedration at the end of next month? (Ok, maybe that was just me thinking that). As awesome as healthcare technology is, Laura and I need to be totally ontop of everything. There is no way I'm going to let a doctor say, "this procedure has a minute risk of clotting" without reminding them that Laura and I had to give our son nearly 80 shots due to a clot.  It's incredible how discussions of risks are trivialized on the front end of procedures. Anyways, Laura and I have learned our lesson: no risk is too small to be ignored. 

On the other hand, the cardiac cathedration that Micah requires at the end of the month is the same procedure that saved his life while he was on life support (ECMO). They will use a small tube to inflate his narrowed arteries that extend off his pulmonary conduit towards his lungs. Though we don't have a fixed timeline on how long we will be in the hospital or when his next surgery/procedure will be, we're confident this will last him for a number of months. 

Here's a photo of his last shot. (Spider-Man bandaid)

Friday, October 17, 2014

Our 4 year anniversary

It's 3AM the morning after our 4th wedding anniversary (10/16/10). I just finished restarting Micah's feeds and giving him his medicine. Laura and I shared a wonderful day working from home together and watching Micah (who sleeps so much these days!). Laura's wonderful (brave?) mother came to watch both the kids this evening so that we could go out for dinner. 

Life is so great today!  Laura wrote an amazing card about this past year. We had a great time talking and relaxing at some local spots. Anniversaries are a great reminder to reflect and remember.  

We live in a broken world, but there is love. 

These past few weeks have been wonderful with our family under one roof. I am so thankful for our supportive friends, family and people we only talk to on the Internet.  Everyone we encounter makes a difference, ranging from a small conversation to bringing us food to praying/sending good thoughts to spending time with us. 

All this time, praying has made a huge difference for me.  Sometimes I pray out of fear. Sometimes I pray out of thanks.  It's useful to me across the gamut. 

Micah is planned to have a cath lab for an orthoscopic ballooning of his arteries (similar to what he had that saved him from being on ECMO a number of weeks ago) in late November.  Dr. Donofrio moved back the planned procedure (from early Nov to late Nov) due to how well Micah has been doing. 

Thanks again for reading! We have some photos from our wedding day on the "about" section on this blog.