Sunday, September 4, 2011

100 Days

Friday marked our 100th day in the NICU.  It was also my adjusted due date.  My body seems to know this, as I have begun to loose copious amounts of hair.  I'm sure this is just hormonal and has nothing to do with my stress levels.

We are so close to the end of our stay here, we can taste it.  McKell seems to not want to leave his private spa and personal attendants, though, and is taking his sweet time with everything.  This child, moreso than normal children I'm sure, was sent specifically to teach me patience and faith.

Let me 'splain.

About one month ago, he was moved to a low flow oxygen system.  This meant that we could start working on oral feedings.  I thought for sure we'd be home within a week.  He has always sucked so stupendously on his pacifier, he has woken up for feedings for months, and he queues his hunger like a champ, with much rooting and sucking on his fist.

Alas, it was not to be.  He just wouldn't get into it.  His swallower seemed to be broken.  He choked every time, and this would usually lead to a vasovagal response, which means that his heart rate dropped to almost nothing and he would basically pass out. This is not an enjoyable experience and so he started to hate to eat.  It was much more convenient to be fed through the nose.  He even started playing opossum so that we would leave him alone, or he'd just pretend to suck.  We call this an oral aversion and had it really taken hold, it would have made life not an enjoyable experience, so we backed off and started being very careful to let him take the lead.  Then we tried thickening up his milk with banana baby food, which made it easier for him to figure out what to do with all the liquid in his mouth.  We took it very slowly.  We waited until it was his idea. 

The other problem we were having is that he would not wake up when he got hungry.  He didn't recognize his hunger for what it was, so he would sleep through it.  He is IMPOSSIBLE to wake up.  Cold towels, naked baby, tickling the foot, baths.  Nothing worked.  He would get furious, but as soon as I'd stop harassing him, he'd be totally asleep.  When we tried to get him to eat when he wasn't fully awake, he would choke even more, or gag.  It was lovely.  The following are some pictures I took while he was supposed to be eating:

So, as you might imagine, I was getting very frustrated and impatient.  I'm so tired of him being there and not home.  Heck, I'm so tired of being there myself...but I keep reminding myself that the Lord is in charge.  One night while feeling especially discouraged, I found myself having a car conversation with God (never had one? Try it out sometime).  As I was telling Him that I thought it was time for McKell to come home, I had a very distinct, almost cartoon, image appear in my was of me handing over something to God, but when He tried to take it, I wouldn't let go.  It was like watching a movie in my head.  I realized I kept telling Him I wanted Him to take over, but then wouldn't let Him.  Can you picture it?  Very comical.  Made me laugh out loud, actually.  In the car.  All alone. 

I'm secure like that.

And here is the beauty and the resolution: Mac has a hernia that needs to be repaired, and the surgeon that does them just moved to UVRMC (our hospital) from Primary Children's in SLC.  This means we don't have to drive all the way to SLC.  The surgery is scheduled for Friday of next week, and will happen before we leave the hospital.  This means that it is covered under his hospital stay as far as insurance is concerned, which saves us about $5K.  It also means we keep our nurses and the presidential suite.  Nice, right?  And this week, our little Bean has started eating like a champ.  He should be ready to head home sometime next week (keep your fingers,  I mean, that whatever  is right will happen...)

I guess maybe the Lord knows what he is doing after all.


  1. Keep trusting in the Lord...he does have a plan and Mac will be home soon. I am sure it is beyond hard to have been there for so long. I only had a slight glimps of what you have gone through. My prayer are with your family. BTW Mac is quite a handsome little man. I just love the cheeks!!!

  2. Though knowing he needs to eat but is really sleeping is frustrating, it's also quite fun to look at all those cute pictures of him! We continue to pray for him and all that love him every single day! We love you guys

  3. He's such a sweetie. You are all still in our prayers! Glad he's eating better now...he'll get it!! Keep us updated!

    ~ Sarah

  4. Yeah, I love that comic image you painted. I can name other times in my life that have been like that, for sure. Keep laughing. :)

    Mac is looking good!

  5. I loved the imagery! How often do we do that??? I'm so grateful this is all turning out so stupendously awesome. Miracles every step of the way. $5K is nothing to be sneezed at either. Obviously McKell wants you to put that money in savings for his someday-motorcycle. Duh! ;) Love you all GOBS. I'l call you soon... it's delicious having the kids back in school...

  6. Guess you'll be needing you're wrap soon! I love conversation like that!