Homeward Bound!!!! Day 200

Ready for home!!

Tuesday May 27th will forever be known as the day we got to take our baby home from the NICU!!!  After 200 days of walking out those doors and leaving Benton behind each night we finally were able to fasten him into his car seat and walk those same steps that we had watched so many families walk before us - the steps toward home.  After we fastened him into his car seat, checked to make sure his oxygen was correctly attached and that his monitors indicated that he was satting well we waved goodbye to Georgetown Hospital and started for home.  As we pulled away from the hospital I was overcome with emotions and actually burst into tears.  Tears of joy, tears of happiness, tears of relief and tears of apprehension.  Every day for the past 200 days I had been at the hospital at my baby's side, never taking a break, always filled with a mixture of hope and dread - hope for each new day, but dread that the obstacles Benton faced would eventually be too difficult to overcome.  Yet, by God's miracles, we made it through to the other side and Benton was declared ready for discharge.

Going home outfit complete with too-big shoes!

The morning we took Benton home we awoke with tremendous excitement.  Words of "Happy Benton Day" spread throughout our house.  As I called that morning to check on little man and confirm that today was indeed the day, we arrived at a small blip.  The doctors had ordered for Benton to go home with a monitor that also had a pulseoximeter, which measures his oxygen saturations, but the insurance company had delivered us the wrong type of monitor.  So there was a last minute scramble to get the insurance company to deliver the correct monitor to us that very day so we could be discharged.  To say this put my nerves on end is a definite understatement.   Luckily the insurance company was amenable and they said someone could deliver the new monitor by 2pm that very day.  Yay!!!

Joe's Beard Shaved to Honor Benton

We soon headed for the hospital brimming with excitement and nervous energy.  Walking into the NICU for the last time was an unreal experience.  Not only were we excited to see our little mister man, but we had forms to fill out, discharge summaries to review, new monitor training to receive and everyone coming over to congratulate us.  As we looked in Benton's crib for the last time we saw that his night nurse Kelsey had made him a beautiful card signed by his nurses and a graduation certificate.  His nurses Kira and Meghan had also made a plaster foot imprint for us to take home to commemorate the special day.  In addition, all of the nurses, doctors and even speech and physical therapists came over to congratulate us and take pictures with Benton.  Father Joe and Reverend Sharon, who baptized Benton, came by and gave Benton a final blessing.

Mementos from our nurses

Our family was overwhelmed by the outpouring of love for our little man and the support we felt from everyone in the room.  Looking around the NICU felt like looking at my friends and family - people I had begun to see every single day for the last 6 1/2 months, people who I saw more often than my own friends in the city.  Everyone was so excited for us and truly amazed at all of the obstacles and challenges that Benton had overcome to get to this very day.  Our NICU family had witnessed these miracles first hand and that created a true bond we had with each and every staff member, from our primary nurses to the doctors and residents to the respiratory therapists and all the support staff; each person made our experience in the NICU what it was and they all had come to celebrate this joyous day with our family.  We couldn't have felt more blessed to have had such special place take care for our little miracle.

Benton with his nurses Kira, Nicole and Kelsey

Benton with his speech and occupational therapists and Dr. Qi

Our friend Nick, a former preemie, came by to wish us goodbye!

As we said our goodbyes we loaded Benton into his car seat and wheeled him out the NICU doors and into the fresh air.  His nurses Kira and Kelsey helped us to parade him down to the car and get everything settled in for the car ride home.  After he was loaded in and everything was shipshape we said a teary, heartfelt goodbye to our nurses.  It was an incredible moment saying goodbye to the NICU - one that I will never forget.  Driving away from the hospital truly felt like we were starting a new chapter - the chapter where Benton is finally home.  With that being said...I will continue to follow Benton's journey as we get our little peanut accustomed to home and share his milestones and victories of our amazing little man.

A final hug good-bye

Love outside the NICU doors

Family photo post-NICU

The Stats:
Days in NICU = 200 days
Born: 1 lbs 0.5 oz (470 grams); 11 1/2 inches long (29 cm)
Discharged: 9 lbs (4090 grams); 20 1/2 inches long (52 cm)

Some pictures of just a few of our amazing nurses.  We love you guys!

Adventures in Nesting: Days 192-199

Little cutie

God has been very good to our family.  Since I last wrote the doctors have challenged Benton to try Low Flow oxygen of 1/2 liter and start ad-libbing his feeds.  This means that Benton can take his bottles whenever he wants rather than at specific times of the day, which is closer to what it will be like at home...he just has maximum and minimum limits set by the doctors so he keeps gaining good weight and not getting any edema.  Since these changes have been made Benton has thrived and has been putting on weight like a champ.  

With Benton so close to coming home the doctors have been prepping us with plenty of trainings and appointments.  On Friday we had the oxygen tanks and NG feeding tube supplies delivered, were trained on his home monitor, met with the NICU follow-up clinic, set pediatrician and physical therapy appointments, practiced mixing his milk with extra calories and giving medications, administered his nebulizers and picked up his prescriptions.  Whew!!! With all this running around and preparations it is really starting to feel real - Benton is coming home :)

Naptime and Cuddle Time with Daddy

Over the weekend we roomed in, which basically means that we got to use the nesting room at the hospital and practice doing everything for Benton without the help of nurses.  Our weekend was filled with bottle feeds, tummy time and naps for Benton.  On Sunday the doctors allowed us to take Benton for his first outdoor adventure in a stroller!  We got to take Benton for a walk outside and let him see the wide wide world for the first time.  What an experience!  It was thrilling to take him for a walk and feel like a normal family albeit one that is pulling an oxygen tank alongside their stroller.  It was definitely the highlight of the weekend.

Enjoying the great outdoors!

Getting a little smile out of our cutie

While we were in the nesting room Benton also got a renal ultrasound to look at his kidneys and see if he still has kidney stones that he had had back in December or had they been dissolved over time.  Today he has another eye exam.  Each day Benton is just checking off more items on his list so he can finally come home.  

Tummy Time on a Boppy

The plan is for him to come home tomorrow and god willing he will! It is with incredibly anticipation and excitement that we wait through the next 24 hours until he can finally come home!!!!!!

Please pray for a successful homecoming for our little fella and years of fun for our family.

Rolling Thunder-Themed 28 Week Birthday Poster

Preparing for Home: Days 186-194

Little cutie

The days since Benton's surgery have felt like a whirlwind.  After Benton's surgery last Monday he was extubated to Hi Flow of 4 liters and within two days he was back down to Hi Flow of 2 liters (i.e. back to where he was pre-surgery)!!  We couldn't believe our luck because Benton had bounced back from the surgery with such ease.  It truly is by the grace of god that our little fighter was able to do so well with his hernia surgery :)

Hanging out in an outfit from his nurse Kelsey!

With Benton getting back to his original Hi Flow settings the doctors were ready to challenge him to feed by mouth again.  After surgery they had given him a few days to just relax and work his way back up to full feeds using his feeding tube, but it was time to try eating by mouth again.  The first couple of days the speech therapist worked with Benton and he was not enjoying the feeds by mouth.  He kept tongue thrusting, crying and generally just not having any of it.  This was disappointing because we had hoped that our little guy would be the hungry little eater he had been pre-surgery.  The doctors and speech therapists told us it was very normal for babies to need a few extra days to get back into taking their bottles after intubation because their throats could hurt.  So we waited...  In the meantime we gave Benton pacifier dips and tried dry breasting again so he could increase his oral interest.  This must have worked because by Friday he was excited to try his bottle again :)

Staring at momma

Since Friday Benton has been eating like a little champ and has been taking many back-to-back bottles.  With his feeds going so well it has really begun to feel like the end is near.  Our nurse Marianne told us that since Benton is still not quite taking all of his feeds we should practice putting in NG tubes (i.e. feedings tubes) into ourselves first so we would be ready to place an NG tube in Benton if need be.  Putting in an NG tube into your own nose is definitely an experience, but if it will help us be able to bring home Benton sooner then we are willing and able!  Yesterday after our practice sessions, I even placed an NG tube in Benton with the nurse's assistance.  If you think holding a screaming baby is difficult - try inserting a feeding tube in their nose while trying to steady their nasal cannula and taping it on their face.  Definitely a different experience, but one that was successful!  In the coming days Joe and I will be practicing inserting Benton's feeding tube a few more times to make sure we have the hang of it before going home.

Tutu and Grandpa visiting Benton all the way from Hawaii!

In other news, yesterday Benton finally got down to Low Flow oxygen of 1 liter!  So far so good.  The doctors are hoping that they can even bring him down to Low Flow oxygen of 1/2 liter so we have a bit of wiggle room at home in case he needs a tweak up of oxygen.  We are hoping that with him on Low Flow and the feeds going well that it could be less than a week before our little one is home!!!!

Learning to stick his hands in his mouth and smile!

Please continue to send your thoughts and prayers for Benton.  We are hoping he can come home soon and that he can rock out the Low Flow oxygen and take all his feeds by mouth.

Solar System-themed 27 Week Birthday Sign!

Octopus bottom :)

Beards for Benton: Day 192

As many of you are probably aware, Joe has been growing out his beard ever since Benton was born.  It is an act of solidarity and Joe has said since the beginning that he will shave his beard once Benton finally comes home.  Well as you have watched over the past few months Joe's beard has grown and grown to Duck Dynasty proportions.  It has grown to the kind of length that random strangers comment on his beard saying "Nice facial hair bro". 

Well his act of solidarity has not gone unnoticed by his co-workers and on Monday Joe's co-workers decided to surprise him during his weekly meeting. 

Joe's co-workers all wearing Benton Beards!

Once Beards for Benton had been established both Benton and I got in on the action :) Hopefully Benton comes home soon Joe can finally shave!!!

Benton and I getting in on the Benton Beard action :)

Hernia Surgery - A Success! Day 185

Resting after surgery holding Tutu's finger

Yesterday Benton had his hernia surgery and it was a resounding success! Our not-so-little fighter totally rocked out his surgery and is now recovering as we speak.

As the days leading up to the surgery began to slip by, my nerves definitely became heightened.  Knowing that your child is about to get reintubated, go under general anesthesia and head off to the OR for major abdominal surgery - its understandable to be nervous...but I think my nerves were even more heightened due to the fact that Benton had been intubated for over 4 1/2 months and no one could tell me for sure how long he might be intubated after surgery. 

The morning of his surgery we awoke with nervous energy and headed for the hospital approximately 4 hours before he was set to go to the OR and it's a good thing we did because his surgery was moved up from 1pm to 11am.  As we arrived in the hospital we saw an empty crib since Benton had been moved back to an open warmer as they prepped him for surgery.  The doctors had inserted an IV and stopped his feeds in preparation for the anesthesia.  By the time we had arrived they had also given him paralytics and reintubated him.  Seeing my beautiful boy zonked out and intubated was definitely one of the harder moments that I have been through in recent memory.  But I just kept telling myself that this hernia surgery is one step closer to going home. 

As we sat with Benton and told him he would do great during surgery, the nurses came over and told us it was time to head to the OR.  We were shocked as we thought we still had hours to go before surgery!  The doctors and nurses loaded Benton into a transporter and we walked with him to the OR to speak with the anesthesiologist before they took him away.  Waiting for Benton to come back from surgery felt like torture, but before we knew it the nurses told us he was finished!

Walking back into the NICU and seeing your baby resting peacefully after surgery feels like a weight has been lifted from your shoulders.  As we watched Benton slowly come to he definitely began to realize that he was still intubated and he didn't like it one bit!  Within minutes of his anesthesia wearing off he was trying to rip out his tube and thrash his head around.  It was quite impressive to see our little guy so feisty after having surgery.  Because Benton made it so very clear to the doctors that he wasn't going to stand being intubated the doctors made the call to try and extubate him.  So within an hour of surgery Benton got extubated!!!!  The doctors didn't even extubate him to CPAP but extubated him to High Flow of 4 liters.  What amazing news!

Hanging out post-surgery

All the doctors and nurses had been trying to temper my expectations by saying Benton would likely be intubated from at least two days and up to a week post-surgery, but our little fighter was having none of that.  It was such a relief to see him extubated post-surgery, as there was always a part of me that was terrified that he would just relapse and stay intubated for quite some time.  We couldn't be prouder of our amazing man!!!

Now we are just waiting for Benton to fully recover from surgery and begin making his way back down to High Flow of 2 liters and then try Low Flow oxygen.  The end is in sight and we can't wait to bring our little wonderbug home.  Thank you for all your love and prayers - they truly mean the world to us.

Happy Mother's Day!!! Days 183-184

Wearing his Captains outfit from his nurse Marianne!

Happy Mother's Day!  Whether you are celebrating it as a first-time mom like me, a mother-to-be, or with your own mother, this is a special day to celebrate the miracle of birth and relish in your own special relationship with your mom.  I know that today means a lot to me.  It's the first Mother's Day I have gotten to celebrate since Benton came tumbling into our lives way too early and way too little, but he has shown me true strength and courage every day despite incredible odds.  Our little one has not only made me a better person but also the mother I am today.

Benton banner and home-made cake pops!

 This weekend I was lucky enough to get to celebrate Benton's upcoming homecoming with my friends and family.  My best friends threw me a baby shower over Mother's Day weekend and it was just the most special shower ever.  Not only was it celebrating a birth, but it was celebrating how far Benton has come since he was born so early.  Each aspect of the shower was special from the slide show showing pictures of Benton since birth, to the hand-made banner and decorations, to the home-made cake pops to the amazing spread of food.  My friends truly outdid themselves and having all of my close friends celebrate my little miracle was so touching.  It was a long road to get to this place but getting to celebrate with everyone and have them care so deeply for my little one brings tears to my eyes every time I think about it.  I couldn't be luckier to have such amazing family and friends by my side during the past few months.

Friends from far and wide came to the baby shower!

This weekend has been one of celebration - celebrating for how far Benton has come, celebrating the special joy of being a new mother, and for celebrating mothers everywhere.  As I write this I am tearing up because this day is just so special to me.  As one of the other NICU moms said "We've been through hell for these sweet babies" but I wouldn't have it any other way.

Mother's Day photo op