Sunday, April 30, 2017

Sorrow and Joy

It has been one year since we came home to be available to help out with Rachel's bed rest or anything else we could assist with.  After about two weeks at home, her early symptoms became more of a concern and the doctor sent her to the Women and Children's Hospital in Huntsville for very strict bed rest and regular monitoring. About four weeks later she went into labor and there was no stopping it.  The twins were born in a matter of about 15 minutes.  At 26 weeks Jackson Wayne checked in at 1 lb 13 oz and Shaun Anthony weighed in at 1 lb 11 oz.

26 weeks is very early but they did great for the first couple of weeks.  Their daily "treatment" plan was simple - rest and grow.  Scott and Rachel were soon able to hold them.

Jackson below getting some "kangaroo" skin time with Mom.

Shortly after the above pictures were taken, both boys developed a common digestive tract problem for preemies this early - necrotizing enterocolitis.  This is an infection of the digestive tract, and with little or no immune system development at their age, things turned critical quickly.  Jackson had surgery to remove portions of his intestine but was unable to overcome the trauma of that.  Our family lost Jackson Wayne McManus at 19 days old.  A small gathering of the immediate family laid him to rest at the Piney Grove Methodist Church in Danville, AL.  This is the church Rachel had grown up in and Jackson is buried next to Rachel's Mom and Dad whom she lost at age 8.

This is a very difficult post to write but Jackson is one of our 5 grandchildren, and though our hearts are broken, we will never forget him.  Life is full of both joyful and sorrowful times.  This is without a doubt the most difficult that Rhonda and I have ever experienced, but it is important that we remember Jackson as we also look forward to seeing him again one day.  Our Christian faith teaches us that children go to be with the Lord in Heaven, and that will be our reunion time with him when our time comes. Thanks be to God for that Saving Grace that He offers to us.  

The pastor shared many encouraging words during the funeral service and asked everyone to focus their prayers on Shaun so he might live to carry the torch forward for his twin brother.  Shaun responded somewhat to antibiotics but the enterocolitis still inflicted its damage.  After an exploratory surgery to check the intestines, the surgeon decided to give the damage time to possibly heal. However, things became critical two days later, another surgery was necessary, and one-half of his large intestine had to be removed.  A colostomy bag was put in place with plans to remove that at a later date and to reconnect the two ends of the large intestine after he had more time to heal and develop his strength.  Then a third surgery was required to repair some of the tissue damage around the incisions. Shaun proved to be a very tough little guy, and though things were touch and go at times, he began to make progress.  Milestones like his first 4th of July and one-month birthday were happy occasions and cause for celebration.

Monthly "birthdays" were celebrated and "recorded" with baseballs. 

1 pound 11 ounces became 2 pounds, then 3 and 4.  Grandparents finally got to hold and feed him.

CPAPs, tubes, and IVs finally were able to be removed, and after 103 days in NICU it was time for Shaun to go home!

He got a joyous sendoff from the nurses and staff that cared for him and had come to love him along with all the others under their care. The NICU world is one we had never known, but what a special group of people these folks are.  We will always have a special appreciation for them and the difficult but heroic and compassionate responsibilities they perform day after day.

Shaun's first venture into the world outside of NICU -  the car ride and trip home.

Shaun's schedule remained very busy with lots of doctor/specialist visits to track and monitor literally "everything" - vision, hearing, diet, cognitive signs, mobility, etc., and of course the continued healing of his surgeries.  Everything was progressing well and he was finally able to lose the colostomy bag which was a wonderful blessing, but obviously also required another major surgery (#4) to reconnect the two ends of his large intestines where the infected tissue had been removed previously. And once again, Shaun proved to be one very tough little boy and returned home for healing. And again, everything was progressing well, including the reconnected lower intestinal tract which began working again almost immediately.  

Then, just as all were thinking that the complications were behind us, Shaun developed a large abscess at one of his incisions requiring a fifth surgery and several more days in the hospital.  He recovered from that and then had a second abscess, requiring a sixth surgery but only an overnight hospital stay for that one.  Here's Shaun on his way home from that hospital trip - everyone agrees that he has a look of determination, especially with those clenched fists, as if to say - "OK, I have had enough - no more! And besides, it's Christmas!"

And so it was and is - no more major surprises since then, no more surgeries, and the follow-up doctor visits are fewer and fewer.  He has one complication with his left eye and wears glasses to hopefully correct that without another surgery. Is he precious or what?

He weighs almost 20 pounds now, smiles all the time, laughs for Scott's magic touch, rice has been added to his bottle (which he holds part of the time now on his own), baby food is being introduced into his diet, and we are all very optimistic about his future.  We have no less than hundreds of photos we could share but here are a few from the past year.

Shaun with the family cat, Ruby.

And you knew there would be airplane and boat rides!!

Shaun has seriously discovered his feet recently and loves the taste of those toes.

Posing on our couch for his first overnight with Granddad and Granny!

No doubt, this has been a tough year for our family, especially Scott, Rachel, and Shaun.  Please remember them in your prayers and pray especially for continued progress with Shaun AND NO MORE COMPLICATIONS!

As Shaun and Jackson were identical twins, we will continually remember Jackson through his brother.

 A stone memorial has been placed at Jackson's burial site and expresses what we all feel. 

"Those we have held in our arms for a little while, we hold in our hearts forever."  

We are so thankful to be able to hold this precious little boy and cherish every moment.

Rachel recently shared with us that they are finalizing plans for Jackson's tombstone and invitations are being sent out for Shaun's first birthday, continuing with the baseball tradition previously noted.  Again, sorrow and joy.

In lieu of gifts, Scott and Rachel are asking friends and family to write Shaun a note or include something for him to open on his 18th birthday - those will be some very special messages to this very special little boy.  Thank you for your prayers, love, and support.

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