Adventures at Home

Incredibly it's already been over a week since we brought Benton home from the NICU.   With each passing day we are getting more and more into a groove and a rhythm.  It takes quite the bit of time management skills, patience, chutzpah, and sense of humility to take care of a baby that was as critically ill as Benton.  Here's a glimpse into our first week as parents at home.

Fun at Home

Carrying Benton into our house felt like pure magic.  After so many months it still feels unreal that he is truly home.  As we walked Benton around his new home we showed him each room and told him the stories of our home renovation.  After he had received his official house tour it was time for him to meet the dogs.  One by one we let the dogs out of their crates and let them gently smell Benton.  Our older dog Kentucky didn't seem too excited and promptly ran upstairs and didn't peek in on Benton for about a week.  Our second dog Indiana was enthralled with Benton and came over and licked his feet!

Joe and Benton at home

After the happy and joyful moment of taking Benton home reality set in.  We had to truly take care of this little baby and there weren't a bevy of nurses and doctors around to help, ask questions or to voice concerns.  While scary at first, it was exhilarating to be able to make decisions about our baby without having to run it by someone every second.  For example, if Benton seemed a little sleepy we could wait 30 minutes on his feed until he woke up.  Such a simple thing felt like freedom!  At the same time though we had to deal with the fact that Benton no longer had a NG tube and if he didn't finish his milk we had to throw it away.  After so many months of pumping it is soul crushing to see your hard work just get dumped in the trash.  This in addition to the fact that Benton needed to meet a minimum food threshold a day started to create a stressful environment.

Sleeping and Tummy Time

To make matters worse, our apnea monitor with pulse-ox was beeping nonstop.  From the moment that we got home his monitor was beeping.  Now normally the apnea monitor is supposed to send out a high pitched alarm anytime the baby has a bradycardia (low heart rate) or an episode of apnea (a pause in breathing).  However, because of Benton's lung condition they also wanted to be able to track his oxygen saturations.  When a baby is wearing a pulse-ox there can be a lot of artificial alarms because each time the baby kicks his foot or waves his hands around it can make the monitor record a desat which sounds the alarm.  Now in the NICU the nurses could silence the alarm but at home the only a way to silence the alarm was by having the desat correct itself (ie Benton needed to hold still or sat better).  Well that is a tough thing to do when it involves trying to make your baby stop waving their arms and legs or cease bouncing them because that can trigger an alarm as well.  

 

In the first 12 hours that Benton was home the machine didn't stop beeping for more than 5 minutes.  Each alarm registered a high ear-piercing shriek that could be heard all over our house and therefore there was no escape.  It was like Chinese water torture.  The beeping would just not stop.  Whether it was registering a desat or a loose connection the machine would just keep beeping and beeping and beeping.  It was enough to make a person have a nervous breakdown and it just wouldn't stop.  Within 12 hours the entire memory on the monitor was full - a feat that should take weeks if not months.  Luckily after one day of non-stop beeping we came to our senses and called the doctors at the NICU follow up clinic and they agreed to lower the parameters in which would set off a desat alarm.  Thank god!  

Smiles!!

As you are all well aware Benton is quite the unique little guy and with his unique circumstances come complicated medical needs.  Since coming home our days are filled with giving Benton medications and nebulizers twice a day, going to doctors appointments, physical therapy appointments and coordinating in-home nursing visits.  This, all in addition to the normal every-day baby duties, such as feeding, burping, changing diapers and challenging Benton to tummy time.  It may sound complicated, but the joy of having Benton at home with us is worth every single second.

Feeding Benton via NG tube

It's funny....out of everything that has stressed us out these first few days it was never Benton's actions that served as the stressor. The apnea monitor drove us crazy, but our little guy could sleep right through it like a champ and wouldn't even cry as we had to fix his leads over and over again.  Benton may not have finished all his feeds, but once we put in an NG tube on the third day home his feeds became enjoyable again.  This past week has definitely been one of sleep deprivation, stress and a bit of disgruntled snapping at each other, but the trigger was never Benton.  Throughout everything he has been the most amazingly good natured baby- acclimatizing to his new surroundings with ease, sleeping through the night, and barely crying except when he's hungry.  We cannot thank god enough that we have our little miracle man at home with us!

Little cutie at home!