Auntie Elyse Comes to Visit!

Tia Elyse and Benton Reunited!

One of the best things about Benton being home is having family come and visit.  It's a very different sensation to have your family visit your child at home and not in the sterile NICU environment.  For example, sitting with Benton while having your morning cup of coffee - possible at home but not possible in the NICU due to restrictions.  Having my little sister come to see Benton at home was such a treat!  Not only was I able to see my little sis and my soon-to-be niece (hint: my sister is pregnant with Benton's cousin) but I could see the joy on my sister's face when she got to hold Benton for the first time. 

Staring at eachother

As many of you know my family was ever-present during our difficult time on the NICU roller coaster and my sister was a very important part of my family support system.  She had been there from the beginning but she had been unable to hold Benton until now.  It was truly a special moment to get to see them together especially since each time she hugged Benton it was like Benton got to hug his cousin too!  It is such a joy to see my sister with my beloved son and watching her with Benton made it all the more clear that she is going to be a terrific mom.  We can't wait until her daughter is born in November and Benton has another cousin to play with :)

Feeding my little man

With my sister visiting we spent a lot of time with our little man and since she is an amazing photographer we took the time to have some family portraits and classic "naked baby" pictures done.  I don't have all of them yet, but here is a glimpse at a few of the awesome pics my sister took:

Sisters loving on Benton

My little cutie!

Little Stud Muffin!

Family Portrait

Pool Time

With the summer heat rising and my maternity leave in full swing, Benton and I have been exploring the great outdoors.  Not only have we been going on daily walks, but we have started using our blow-up pool in the backyard.  Benton loves the water - using his little hands and feet to splish and splash in the pool.  It's such a refreshing respite in all the heat and such a fun activity too!  It can be a little hard to get him outside with his oxygen, monitors and such, but once he is in the pool he is one happy camper :)

Pool time!

Naked baby in a pool :)

Loving life at home

Amazing cutie!

It's been almost 4 weeks since our little sweet man came home to us and it has definitely been a wondrous ride.  In the month since we have been home from the NICU, I am amazed at the progress Benton has made each and every day.  He is now over 10 1/2 lbs and 22 1/2 inches long...a long way from his 1 lb and 11 inches long.

Benton stares into your soul and stealing your heart

Loving his outfit from nurse Marianne

Each day is a new adventure with our little one and each day he learns something new and amazing.  Since coming home he has truly found his hands and loves to stick his fingers, thumb and whole hand in his mouth every chance he gets.  He rocks out his daily tummy time and has great arm and neck strength.  Benton has also been getting interested in toys such as his caterpillar rattle and links.  It's so much fun to watch him discover that he can bat and grab these toys as they hang from above his tummy time mat.  Finally he is learning how to roll over from his tummy to his back... he can't do it every time but every once in awhile he surprises himself with his strength. :)

Showing off hands together, holding onto his giraffe wubbanub and staring at his mobile

Tummy time!

Tummy time part deux!

Having a child you have the opportunity to watch a human being grow before your very eyes is such an amazing thing.  Each day I am blessed with watching Benton discover the world and see it through the innocence of a child.  His facial expressions are priceless.  His expressions run from concerned to surprised to excited to scared to pure joy.  While Benton mainly communicates to us via his facial expressions he has started to make a few noises every once in awhile when he is excited.  Hearing those first bits of speech is such a wondrous thing.  I can't wait until he is cooing and laughing in the coming months.

Hanging with Mommy

Love Love Love

Our lives at home have fallen into a regular routine now - one that is filled with doctors appointments, physical therapy, feeds, dates with his tummy time mat and daily walks.  Benton has at least 2-3 doctors appointments a week and weekly physical therapy.  Each of these sojourns outside the house is a production in and of itself.  We have to get him hooked up to his portable oxygen tank, bring the apnea monitor, make sure we have NG tube feeding supplies and bottles and the requisite changes of clothing etc.  While it can be burdensome getting him into and out of the car or stroller once he is set in his stroller it feels like easy street.  Each day we are getting better at planning out everything he needs and it is beginning to no longer feel overwhelming getting out of the house for something as simple as a walk. 

Walking the World Cup with Dad.  Go USA!

Our appointments with Benton's doctors have been great so far.  He is doing well and is considered stable.  We have had to increase his oxygen requirement to 3/4 liter while he sleeps since he is a shallow breather, but other than that his oxygen requirements have been stable.  Since he had come home Benton had started to have more and more issues with his feeds by mouth as a result of him starting to get bad reflux.  Luckily the doctors have started him on prevacid (a reflux medication) and it seems to be working.  He has gone from taking 90% of feeds in the hospital to 5-10% of feeds at home when the reflux was bad and now he is back up to 60-70% of his feeds by mouth.  Yay!

Hanging with his stuffed animals while hanging his feeds

Finally we got the chance to celebrate our first Fathers Day as a family.  I made Benton an awesome Benton loves Daddy onesie and surprised Joe with Benton wearing it that morning.  I also had Benton sign the Fathers Day card with his foot!  It was such a special day having Benton home with us and I know we look forward to many many more holidays together as a family.

Happy Father's Day!

We continue to hope and pray for Benton to remain healthy and happy here at home.  We want his reflux to go away so we can finally take out the feeding tube and for his oxygen requirements to go down over time.  Overall, we just feel so blessed that our little nugget has made it this far and we have the chance to snuggle him each and every day and give him the outpouring of love he so rightly deserves.

Cute bibs

Happy 7 Months Benton!

Today we got to celebrate Benton's first month-a-versary at home!  What a wonderful thing!  Today Benton is over 9 1/2 lbs and rocking out his tummy time.  We love our little miracle.

To celebrate Benton had a dance party :)

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!