G Tube Recovery

Here is our G tube recovery update!

The boys have Gastrostomy Button (MIC-Key) in size 14 french.   They also got a Nissen Fundoplication.

We we feel the G button will be beneficial for a number of reasons.  Even when the boys were successfully eating everything by mouth it was not without struggle.  They would sometimes take an hour per bottle, using far too much of their energy that could be used on other more productive things.  On good days it was fine. On bad days it was dangerous. There were days where it felt like every second of their alert time was spent feeding as opposed to strengthening and stretching or other important therapies.  And after all of that they were both prone to vomiting up large portions of their feeds as well.  The G-tube does not prevent us from feeding orally but rather gives us a steady safe and reliable method to use for the majority of their feeds.  We can and have every intention to work on their oral skills now as well.  But we can also make use of their rest and nighttime for calorie intake, and focus their daytime energy on other things.

The fundoplication is an added measure to help prevent reflux and vomiting. It made their surgery longer, and is why the Dr wanted a slow cautious increase in their feeding volumes. But it will help us reduce the likelihood of aspiration pneumonia (which is what made Landon very very ill in late October).

At my request we revisited their diet. Instead of huge amounts of formula, we are now trying pediasure. Their calorie count hardly changed, but we were able to decrease their total volume.

They have handled all of the above well! I drove up after church today and couldn’t believe how alert and feisty they both were. I’ve cuddled with each of them, and am now typing on my phone while respiratory therapy works with them.

We are on track to take them home tomorrow! If all goes well, K will have three more attendees at his Christmas Program tomorrow night!

Wish us luck!

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G Tube Surgery Day

Today we had a BOBO for G Tubes.  (Buy one Buy one)  (I’ve never been a very good shopper)

First things first – both boys are doing great!  They are already acting like themselves.

Also important – THANK YOU for your thoughts and prayers today.  I can honestly say it has been a stress free day. At one point I was eating chex mix, holding Nolan, and watching HGTV and realized it was one of the most relaxing mornings I’ve had in a long time.  We’re not normal, but we’re blessed.

Tomorrow I’ll work on technical details, and photos of adorable tube and tape free cheeks!

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Our day started at 2:30 this morning.  We were here at the hospital for our pre-op check in before 6:30.  We’ve had friendly staff who doted on me and the boys all day.

Landon went back first around 8:45 or so.  It took a little while to get started because he gave the IV team trouble (this always happens).  The surgery itself lasted longer than anticipated because he had scar tissue on his stomach and spleen.  This was obviously unexpected, and I promised them I did not perform any at home surgery kits before we got here.  :-)  I haven’t heard a conclusive reason for why that was the case, but one theory is that as he vomits, or when his stomach spasms, things rub together.  Nonetheless, it wasn’t harmful or a reason that the surgery didn’t go well, it just made things take a tad longer.  The fantastic news is that they were able to do the surgery laparoscopically.  This will help reduce scarring and ease recovery.

Landon and I getting ready for his go time:

Landon Cuddles

Landon Cuddles

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Nolan ended up not getting called back until around 2:00.  His surgery went smoothly as well.  His IV worked on first attempt and he did not have scar tissue.  Additional fantastic news, his incisions are also laparoscopic!

Nolan and I enjoying some cuddles during Landon’s surgery:

Nolan Cuddles

Nolan Cuddles

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As for the short-term plan, they will stick with IV feeds today and tomorrow to let their stomachs rest.  They will begin to introduce tube feeds on Thursday, and slowly increase to higher volumes.  It is impossible to be certain, but current estimates are that the boys will be here until Sunday or Monday.

They are sharing a PICU room, and we even have our own couch, window, and bathroom!

They do not seem to be in any discomfort, and both boys are peeking out from behind those beautiful eye lashes from time to time.  As if to say “we’re just fine mama”.

Pack, Unpack, Launder, Repeat.

We’ve had a fun-filled Thanksgiving!  Family time is important, and we strive to fit in some “normal” any chance we get.  So for us, that meant over the river and through the woods this Thanksgiving.  You might think that we would have to be crazy to travel 11 hours with the babies.  And you’re probably right.  But thankfully they are WONDERFUL travelers.  Aside from a few ill-timed spitups (which happen whether we’re in a car or not)  the travel to and from went fantastic.  And the time there…totally worth it!

We love getting to share these boys with family, and make holiday memories with them.   I should have taken more photos, but trust me when I say they were a big hit, and quite the troopers.  It’s not always easy to be away from our comfort zone and not surrounded by our routine, particularly given the amount of stuff we use on a daily basis.  But despite being away from home, all 5 of us were cozy, and were able to soak up some quality time.

Lookout!

Lookout!

The most enthusiastic puppet show I've ever seen.

The most enthusiastic puppet show I’ve ever seen.

 

Cuddles!

Cuddles!

Loving a head rub.

Loving a head rub.

Getting serious.

Getting serious.

Brother time.

Brother time.

Still making time for tummy time and stretching!

Still making time for tummy time and stretching!

 

We are home and settled, with most things washed and put away.   And now, I’m starting to prepack the babies and myself again for the coming week.  This is a big one!  I will take them in the middle of the morning on Tuesday to our Children’s hospital for their pre-surgery check in.  On Tuesday, each boy will have G-tube surgery.  Justin and I are going to take turns being out there.  We will also have some reinforcements at home to help us ensure some consistency for K, and just to have extra sets of hands around as Justin and I cross paths on the interstate.

I will update you on here and/or on facebook regarding Tuesday and the days that follow.  As for specific prayer requests:

  • Safe travels in the coming week
  • Successful, uneventful surgery, and recovery
  • Improvements for the boys in their ability to keep food down
  • A fun week for K, as he has to cope with parents coming and going for the next few days
  • Good memories and sweet smiles along the way
  • That God continues to work in and through the fragile lives of these boys in big ways

 

 

Getting Organized

Any kids room, twins or not, has lots of “stuff”.  Clothes they are growing in to, growing out of, and miscellaneous supplies.  That is true for us as well, our “stuff” just looks a little different.  The boys have had a range of supplies and changes as of late.  AND a growth spurt, particularly for Nolan.  AND new therapy items.  Before we knew it, it looked like this:

Yikes!

Yikes!

I swear I can find things.

I swear I can find things.

This is embarrassing.

This is embarrassing.

In preparation for more organization, I bought more stuff!

In preparation for more organization, I bought more stuff!

Believe it or not...this ALL came out of there.

Believe it or not…this ALL came out of there.

Hoard much?

Hoard much?

Ta da!

Ta da!

Much better!

Much better!

Much better!

Much better!

Much better!

Much better!

 

We’ll have new and different gear very soon, but now we have room for it.  And maybe, just maybe, we’ll be able to find it too!

2014 Hero Challenge

We have a lot to be thankful for right now.  Recoveries, health, memories, helping hands.  It feels like a good time to remind you of why we’re thankful for you, by giving you the results of the hero challenge.

Inspired by the way in which so many have reached out to help us, support us, love us, and pray for us, I wanted to say “thank you” in a far bigger way than I could ever do alone.  So…we asked for your help once again, in paying it forward.  You responded in full force, and made a difference for so many.

Here was the original request…

 

Here is a special video that captures the enthusiasm…

 

And here are SOME, (but no where near all) of the things you did.

 

  • ›  Took a meal to a family that recently had multiples. Complete with Melody’s favorite taco dip.
  • ›  Donated a massage gift card to a mom who has been busy with her family, including a special needs child and a husband who is recovering from multiple surgeries.
  • ›  In honor of Landon and Nolan’s 1st Birthday, Pop & Nan made over 30 pints of peach preserves to be given to other people & challenging them to do something nice for someone else in the name of Landon & Nolan.
  • ›  Took “welcome” items to a new neighbor.
  • ›  Paid for a month worth of day care for a family in need.
  • ›  Delivered snacks and treats to the local police officers, fire department, and EMS crew.
  • ›  Made cupcakes for meals on Wheels for homebound seniors.
  • ›  Paid a band camp fee for a student who could not pay.
  • ›  Ordered T Shirts for some who could not get them.
  • ›  Bought a meal for a family at Culver’s.
  • ›  Fixed a dinner for a family suffering a devastating loss of a loved one
  • ›  Stopped to assist a family who had a piano fall off a trailer.
  • ›  Paid a friend’s admittance to the Women’s Club play.
  • ›  Donated to Somerset Christian School scholarship fund to assist children with tuition.
  • ›  Signed up to be a marrow donor.
  • ›  A grandson of our dear friends, was also a Super Hero, he battled brain stem cancer for 10 months, but yesterday he went to be with Jesus. We have sent a gift from you two Super Heroes in your name to help pay his medical bills. Someday, in heaven you can let him know who you are. You two, as well as he, have made a difference in many lives.
  • ›  I decided to honor the boys by delivering ice cream to The Bank of Romney (Augusta branch) God Bless the whole family!!!
  • ›  Helped an older gentleman, who was admiring Rose, sit on a motorcycle for the first time in years.
  • ›  Bought Speedway gas cards for Hancock Christian Clearing House to distribute to those in need.
  • ›  Surprised a family of 7 by paying for their meal at a restaurant when we were invited to share a birthday event with them.
  • ›  Donated $100 for the School Backpack Program to provide food on weekends for elementary children that would go hungry without this help.
  • ›  Purchased pink light bulbs as we will “Glow to Show” our support for Breast Cancer patient education, research and care.
  • ›  Provided meals to a family with new twins.
  • ›  Donated Books to a local school
  • ›  Helped some friends in need
  • ›  Volunteering for Project Lead the Way at the local high school.
  • ›  Spent extra time with her mother, and talked about some of her favorite memories.
  • ›  Helped with the Angel Choir, the UK hospital, pitched in extra with some family needs.
  • ›  Donated money to the Blanchard Valley Center
  • ›  Made a donation to the Ronald McDonald House (3)
  • ›  Gave away their Garden Vegetables
  • ›  Helped buy supplies for a classroom in Morgantown
  • ›  Took a meal to a friend
  • ›  Sending a birthday in a box for a foster child who keeps getting relocated.
  • ›  Took one of her special needs students to a Rotary Club meeting where they could be the guest of honor.
  • ›  Donated Blood
  •   Ran a Superhero 5K
  • ›  Bought books and toys for a friend who is going to take in a foster child.
  • ›  Helped a friend get caught up on bills
  • ›  Being more understanding and patient in general. Hold doors. Say thank you.
  • ›  Helping Coordinate a search for a marrow match for a terminally ill child.
  • ›  Helped locate a runaway dog
  • ›  Donated food to the weekend nutrition program through their local elementary school.
  • ›  Donated to the local food pantry
  • ›  Took a couple out for a sunset cruise on the lake as a gift
  • ›  Put money on the lunch card of a child who was denied food and couldn’t afford to put more money on.
  • ›  Donated food to the “Nutrition on Weekends” program
  • ›  Paid to help the local band go to Chick Fil A bowl
  • ›  Donated Walmart gift cards to the pregnancy crisis center
  • ›  Donated to Ruff Start Boxer Rescue
  • ›  Donated a free photo session for Landon and Nolan’s first birthday
  • ›  Bought formula for a hungry baby to help a family in need.
  • ›  Gave Justin and Melody a free day/date night while they watch the kids.
  • ›  Donated household items to the Hope House
  • ›  Filled up the Hope House Penny jar
  • ›  Delivered donuts to the local public servants
  • ›  Delivered donuts to the morning shuttle crew
  • ›  Delivered popcorn and cookies to the cleaning crew, evening shuttle crew.

 

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An Unexpected First

Tuesday was a busy day at our Children’s hospital.  Up at 3:30 am, we got off to an early start getting organized and out the door.  Thanks to J for getting the boys changed and in their seats, and thanks to D for accompanying me on the trip for a very useful extra set of hands!

There were two planned appointments: Vision assessments for both boys, and a lingering upper GI appointment for Landon as a pre-surgery check.

Vision was first.  The boys have what is called Cortical Vision Impairment.  Essentially, it is a neurological (brain) rather than ocular (eye) based impairment.  We have a lot to learn about the boys’ CVI and Tuesday was a good start on that path.  They performed a few different tests to check response rates, and various other aspects of the communication from eye to brain.  I was allowed to help their eyes open for the first test, which involved a lot of strobe and blinking lights.  The second test involved simply colored, slow-moving shapes and pictures projected on to a wall in a dark room.  A video camera recorded their eye movements.  And they needed to actively participate.  Not surprisingly, Nolan surprised me.  He needed a few minutes, but eventually started clearly noticing and observing the wall.  I can’t say yet how the DR will assess his vision, or if there is much ability to work with, but I believe Nolan gave them the best test attempt we could have asked for.  Landon found the whole exercise silly, and chose not to participate.  :-)  But hopefully we can infer a thing or two from Nolan’s test.  And we’re already putting together some good therapy ideas.

The Upper GI went well, and they observed what they needed to for Landon’s pre-surgery checkout.  In the meantime, they were able to confirm the proper placement of Landon’s NJ tube as well.  Speaking of which, that bring us to the unplanned detour of the day.

Monday night, Landon’s tube quit working.  The pump would alarm, and did not fix even after replacing the bag and hookup.  We tried manually clearing his tube, but could not budge any liquids in or out.  Since it was already evening time, and he would have to fast for a few hours before his upper GI anyway, we decided to stop attempting feeds, and let the hospital determine what was wrong. Unlike the NG tubes, we can not move or replace Landon’s NJ tube without help from radiology.  I told D the plan Tuesday morning, and she agreed we were fine skipping the small amount of formula, and commented about what she used to do to fix that issue.  So in between Vision and the Upper GI appointment, we visited radiology for an NJ check.  Between waiting to get squeezed in, and a lengthy registration process, we ended up filling up what was supposed to be our relaxing two-hour lunch break.  During that time, the nurse joked about the same home remedy D mentioned.  So after a two-hour wait, that nurse checked in their “supplies” and found one remaining can of the secret ingredient that works great at unplugging tubes.

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It took some pretty strong pushing, but sure enough, the tube cleared up with a little Coke. I’m not sure if that’s a commercial for it or not.  But nonetheless, we now know a quick fix at home.  And sweet Landon had an unexpected first.  His first Coke.

Landon Coke

12 Months! (Ish)

L and N are 12 months old (sort of).  Ok, minor detail.  I had planned to do this on their due date, but that came and went during Landon’s pneumonia.  So here we have the 12th and final installment!

L:

Weight – 21 lbs 3 oz

Food – Landon is currently taking a constant feed via an NJ tube.  His rate is 40 ml per hour, roughly 32 ounces per day.  A G-tube surgery is planned for early December, and once the dust settles, we plan to get back to working on oral feeds.  Even if just for spoon feeding, and a bottle or two per day.

Accomplishments – Coming out of TWO hospital stays!  Landon is very vocal now, making coos, ahhs, and growls throughout the day.  He had a setback in terms of tone, (as would any of us who were sick for 4 out of 6 weeks) but he will get there!

Likes – Hand rubs, being talked to, and lights.

Other – Wearing 18 month clothes (24 month in hand me downs) and size 4 diapers. Sleeps so peacefully and wakes up smiling!

N:

Weight – 21 pounds!!!  (Holy smokes!)

Food – Nolan is still on NG, taking five 6 oz bottles per day.  Like Landon, he will have the G-tube soon, and we will also work on getting back to some oral feeding once he is ready.

Accomplishments – Coming out of a hospital stay, more responsive smiles, more alert time.

Likes – Leg massages, tummy rubs and being talked to. 

Other – Wearing 18 month clothes and size 4 diapers. Sleeps great!

Moments I don’t want to forget:

  • The combined three hospital stays.  They are so tough and continue to amaze us.
  • Watching Landon’s ambulance lights kick on.
  • Introducing them to more family at the reunion.
  • Their first birthday party!
  • Having so many join in the celebration with the hero challenge.

And now…their 12 month photos!

L

L

N

N

 

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And let’s not forget how far they’ve come!

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