Friday, December 4, 2015

Carrying On

“Great is thy faithfulness, Lord, unto me…
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!”
-Lyrics from the hymn, Great is Thy Faithfulness;
also see Lamentations 3:23 and Ephesians 1:18-20

So, sometimes our family is a spectacle.  Okay, quite often our family is a spectacle.  Whether it’s on the streets of New York, like this summer, at church, or during an attempt to all eat out as a family (and then we quickly remember this was NOT a good idea… and so we will stay home and order in until amnesia strikes again).  I actually quite like it and certainly adore our wild brood, but I digress.

Anyway, one such occurrence took place a few weeks ago at one of John’s doctor’s appointments.  In my pregnancy-nesting mode, I was packing in all of John’s new and routine doctor’s visits before the baby was to come.  And if you recall, baby Michael decided to come 4.5 weeks early, and, therefore, I was that crazy mom calling doctors’ offices prior to my somewhat emergency C-section to reschedule many of these appointments. 
     Me: “Umm, I’m in the hospital about to have our baby today, so I’m going to have to reschedule that appointment for John next week.” 
     Doctor’s secretary: “And why are you still on the phone with me?”

Fast-forward two months… John, Michael and I are in the waiting room of a new local neurologist’s office at one such rescheduled appointment. Still feeling it would be inappropriate (MEAN) to leave 3 children with a sitter, Michael accompanied John and me to this appointment.  Once called back, the walking spectaclecomprised of an almost 7 year old in an umbrella stroller being pushed by a Mommy wearing a nearly 2 month old strapped to her chest in a worn out Baby Bjornmade its way through the next door.

Then I see it.  The scale.  A scale for people who stand.  Not for my 35 pound, almost 7 year old who cannot sit independently.  I should have suspected it.  I should have weighed him beforehand, reported the number, and avoided this part of the appointment as I have done in the past.  Instead, I channeled my inner Wonder Woman (which all moms possess), attempted a confident smile, and told the nurse I would stand on the scale holding John (while still having the baby strapped to me) and then she could subtract my weight (plus the baby’s) to get John’s weight.  I’ve done this many times.  But this was the first time with another person strapped to me. I mustered all my strength (which isn’t much post-partum) and leaned over to pick John up out of his stroller, hoping it would work, hoping I wouldn’t hugely embarrass myself.  It did.  Super awkward, but we managed to get the weight and moved on to the next portion of the appointment.

But what made me stand still in my tracks was what the nurse said as the spectacle that was us, all 3 of us, stood on that scale. She remarked in her Jamaican accent, “I guess it’s true what they say: A mother can always carry her own.” 

This encouraged me tremendously.  This nurse was used by the Lord, and she probably didn’t even realize it.  Maybe I’ll get to thank her one day.  The Lord spoke through this woman to address an area I had been doubting, grieving in advance, even.  With my minimal post-partum might, I had not been feeling very “good” at lifting and transporting our sweet John.  While my mind quickly fled to the worst—that I soon wouldn’t be able to lift him at all, either because he is getting bigger or because I am getting weaker—my sweet (and much saner in that moment) husband reminded me that I have just had a baby, that I will regain my strength, and that I am capable of carrying my son.  A mother can always carry her own.

The greater lesson I am learning here is that the Lord will continue to provide— He will make a way, even if this looks differently as time passes or circumstances change.  Despite the unknowns of the future for John or for any of us, God promises to carry us… and that is how we are enabled to carry that which He has entrusted to us.   

We carry on as He carries us.

“He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; He gently leads those that have young. He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; He gently leads those that have young.”

-Isaiah 40:11

 Maddie and Poppy meet baby Michael for the first time in late September!  All the boys are thrilled!

Great-Granddaddy above and hand in hand below.  William Chester and Michael Chester.

We celebrated TEN years of marriage on October 22nd!  Baby got to accompany us on our date. :)

Thursday, September 17, 2015

An Unexpected Turn of Events!

A week ago today, I arrived at 1:30 pm for my 35 week appointment at my regular OB practice.  The doctor pulled out the Doppler, and then I planned to be on my way to get John and take him to one of his doctor’s appointments.  I’ll be honest, with high risk OB visits every couple of weeks throughout my entire pregnancy with the full-fledge high tech ultrasounds, I don’t get too worked up over the Doppler… especially when I feel the baby kicking and know all is well.  However, this time, the doctor had a difficult time picking up a consistent heartbeat and then, when she did, it was a little lower than the normal range.  As she went into the hallway, I heard her order an “emergency ultrasound,” and I was quickly escorted across the hall with not a minute’s wait in the waiting room.  The baby’s heartbeat was still a little low, but then came up, then decelerated again, but then remained in the normal range the rest of the time.  But I was told to waddle as quickly as I could to the hospital portion of the medical campus to see my perinatologist for another ultrasound.  There, the baby’s heartbeat was normal the entire time.  Huge relief!   

And yet… my doctor told me they wanted me to stay overnight for heart rate monitoring in the hospital.  I figured something else was up (and had even asked about the umbilical cord), but it wasn’t until I was admitted to the hospital that I was informed the cord was wrapped twice around our baby boy’s neck.  My main doctor (not either of the ones I had seen that day) called and told me the baby would most likely be delivered the next day, if not before, depending on how the night went. 

Here I am, finding myself in a hospital bed hooked up to monitors, without a hospital bag carefully packed, without my husband (who I asked to still take John to his doctor’s appointment… yes, I’m a little nuts), without coming home to my boys as I promised, preparing to deliver a baby who would only be 35 weeks 3 days on the next day, which also happened to be September 11th. And my parents were supposed to be heading out of town on the 12th for a week.  I had planned to have another VBAC.  Our cord blood kit from Duke wasn’t supposed to arrive for another week.  I was also supposed to be getting blood from the Red Cross that was a match for me (I have a lot of antibodies and a health condition making for a rare cross match) to have on hand for whenever I went into labor.  I thought we had another month, not being due until October 13th. 

Honestly, most of the important things at the house and with my children were in good shape.  And who needs a legit “hospital bag” anyway?  We were able to procure a different bank’s cord blood kit at the hospital, and who cares about what many might consider an unfortunate birthday (9-11)? Mostly, I was concerned about the baby’s health, knowing after months on bed rest with the twins how important each additional day and week is within the womb.  I was grateful knowing lung development is typically complete by 32 weeks.  However, I was still concerned about respiratory and feeding issues and possible NICU time.  I just didn't feel we could handle more NICU time after John’s 3-month stay and of course never getting to bring Warren home from the hospital. 

The tears flowed as all of these questions were raised and discussed among our doctors and family.  Simultaneously, I couldn’t deny the excitement rising up in my chest… would I meet my newest little boy tonight or tomorrow?   The Lord truly provided in these moments despite the fear and anxiety I must truthfully acknowledge.   Dear friends stopped by on Thursday and Friday to visit and pray with us and simply distract us with their love and personal updates.  Additionally, my cousin and his wife were in the hospital having just welcomed their precious little girl the day before. I was able to visit with them along with my aunt and uncle.  I also felt comforted knowing that many were praying for us.  

I cannot stress how crucial it is to have a body of believers you can count on to intercede for you, especially after life’s crises and tragedies have come your way.  In these tenuous moments, it can be downright hard to lean into the Lord’s arms, to trust, and to assume the best.  Sometimes, I simply cannot go there. But I trust that others are going there on our behalf.  

Back to this wild week… we wondered if it would be worth it to simply remain in the hospital a few more days while monitored so baby boy could cook a little longer.  My doctor convinced me that even that approach was risky, and that we had a healthy baby in there and felt it best to “win while we could win.”  This was further confirmed Friday morning with another ultrasound, now showing the cord wrapped around the baby’s neck THREE times.  By this point, I definitely had a peace about a C-section that day.  And I wasn’t even disappointed about not getting to attempt another VBAC.  That was why we attempted it with Daniel and Andrew and were grateful to be successful in that… so we wouldn’t have to end up with too many C-sections and that, if and when the time came to need another C-section, we wouldn’t need to count them on two hands.  What's more, the blood I would need in case of an emergency came in before the procedure... another blessing. 

So this is the story how our fifth beloved son entered the world, Michael Chester Stone, on September 11th, 2015 at 5:55 pm via C-section with my doctor at the helm, assisted by one of his partners who was on call that day.  Dream team for sure.  Meade and I truly felt at peace and were overjoyed when we heard our baby boy cry out as he was brought into the world.  He weighed in at 4 pounds 15 ounces, measuring 18 and 1/8 inches long.  Beyond grateful that the cord issues was caught exactly when it was!

Despite some grunting/minor breathing issues for a couple of hours, Michael received great Apgar scores and was healthy and strong overall.  He never required intervention or intermediate or NICU care.  And he was able to come home with us on Monday.  Praise the Lord!  We are in love!  Thank you for continuing to pray, especially as the early newborn days can bring anxiety triggers and bittersweet memories and emotions.  Pray we will fight fear with faith and embrace joy despite mourning.  Trusting God in both life and loss, as this blog is all about – that He indeed is making all things new!
Proud big brothers meeting baby Michael

A few more tidbits or feel free to skip to the additional pictures at the end…

Michael’s name: It took us longer this time around to come up with a name.  For one, we’ve already given out 8 boy names.  Secondly, the pressure kind of builds with each additional boy name as you want them to go together and love each name as much as the one before!  Michael completely fits this little fellow, and we love the significance behind both of his names.  Michael is one of Jesus’ mighty, warrior archangels in the Bible, the protector of Israel.  Additionally, Michael means “defender of God’s people” and “who is like God.”  What’s not to love?

Chester is my father’s middle name, a man I greatly admire in every way!  He is one of the most godly, devoted, caring, disciplined, wise men I know – full of integrity and character, traits we pray over Michael’s life.  Chester is also my brother William and grandfather’s middle name, also wonderful men who we admire and love dearly!  So glad Michael can share a name with all three of them!  Our first-born and John’s twin, William “Warren” Stone, was also named for my dad.  I love that Michael Chester shares a name with the same men for whom his older brother in heaven was named.  Very special for us!  Grateful for all five of our sons.

Birthday significance of September 11:  Michael actually shares a birthday with my awesome sister-in-law, Monica, along with a couple of other dear friends, and it is also the wedding anniversary of another treasured friend.  Additionally, September 11th is the anniversary of John’s last seizure… this year marked 6 years!  It is a day we celebrate and, now, we have another extra special reason to rejoice on what has become a patriotic day and symbol of strength for our country.

A significant passage of Scripture that has been on our hearts during this pregnancy… very representative of God’s redemptive work in our family and the joy Michael brings to us:

Psalm 126 (The Message):
The Message
1-3 It seemed like a dream, too good to be true,
    when God returned Zion’s exiles.
We laughed, we sang,
    we couldn’t believe our good fortune.
We were the talk of the nations—
    “God was wonderful to them!”
God was wonderful to us;
    we are one happy people.
And now, God, do it again—
    bring rains to our drought-stricken lives
So those who planted their crops in despair
    will shout hurrahs at the harvest,
So those who went off with heavy hearts
    will come home laughing, with armloads of blessing.

NIV  Verses 5-6  (LOVE this section from the NIV)
Those who sow with tears
    will reap with songs of joy.
Those who go out weeping,
    carrying seed to sow,
will return with songs of joy,
   carrying sheaves with them.

Aunt Monica, the birthday girl, Uncle William, Honey and B.
Uncle Cole, Maddie and Poppy will be meeting baby Michael soon!

At home!

Sunday, September 6, 2015

Nesting Part Two

Thank you for all your prayers as two of my boys have been up north!   John’s procedure was thankfully uneventful, the doctor accomplished his goals, and recovery is going well so far.  Praise God!  Not surprisingly, most of the tightness was in John’s hamstrings, so a good bit of muscle lengthening was done there.  John has open-toed casts that go up his legs stopping right above the calf muscles.  Meade said he is getting used to them, and they won’t prevent him from participating in any of his usual activities (except we are obviously modifying bathing techniques).   

On Friday morning, Meade and John headed into New York City for follow-up therapy with a wonderful lady another family in Atlanta had highly recommended.  She is an Anat Baniel practitioner and is the one who originally recommended the orthopedic surgeon in New Jersey.  It is refreshing to see people in both the medical field and the more “complimentary” mindset working together and believing in the necessity of each field’s work in the development of a kid like John. It certainly takes a village! The therapist was encouraged by how long and straight his legs are after the procedure.

In the last post, I mentioned two other big endeavors we have undertaken in this nesting season.  One was a trip to NYC in late June/early July.  Two weeks.  ALL FIVE of us.  We had no idea what to expect, but it actually turned out to be a wonderful family vacation full of adventures in addition to being a great time of therapy for John.  He saw the same practitioner he is seeing this weekend twice daily for ten of the days we were there.  After an initial snafu with our housing arrangements, God provided the perfect place for our family that even was attached to a grocery store down below.   Between getting our essentials there and ordering a lot of pizza, we were set!  And we had a lot of time to be tacky tourists (you can imagine the looks we received pushing two strollers with three kids down the street with this next baby clearly making his presence known as well).  Walks through Central Park, Museum of Natural History, Children’s Museum, boat ride to see the Statue of Liberty, a few fun meals out, catching up with some old friends, etc.  We really had a nice time, and it had been awhile since we have taken one of our combined vacation/medical trips.  Brought back a lot of memories from the many trips we took to Boston and Philadelphia in the early years.

We learned a lot from each therapy session, especially in involving John more in his daily routine than simply “doing” things to him, like mechanically plowing through feeding, bathing, or dressing him.  This is a significant change in approach to seemingly simple things like how we help him sit up or how we pick him up and transport him... things can become perfunctory.  We also worked on combining eye contact, verbalization (like asking him to say “ahhh” to indicated “yes”), and reaching out/touching to communicate what he wants. 

The other major undertaking was a trip to Plano, Texas for one night in late May.  We saw a brilliant and kind neurologist who specializes in cerebral palsy and actually has cerebral palsy herself!  Not only is she world-renown in this field (hence the trip), but it was also so refreshing to be with someone who gets it from the patient perspective as well… which leads to one of the main points of this trip: to gain a proper diagnosis one way or another for John as he had not had a comprehensive evaluation in over three years, is now in a very stable place medically at age 6.5, and most of his doctors were no longer believing John had primary mitochondrial disease.  Diagnoses aren’t always helpful, especially if therapies and interventions are going to be the same regardless, but they certainly can be beneficial when it comes to insurance, Medicaid, and qualifying for certain clinical trials.  So that was the goal… to see if John has pure CP due to his genetic mutation rather than a primary mitochondrial disease also being a factor.  Pure CP was found to be the case. 

This is significant in that we are hoping to enroll John in a trial next year (whether or not he is in the actual trial or in the “compassionate use” category) through Duke in which sibling stem cells from banked umbilical cord blood are given to the patient.  We have been hoping something like this might become available for over four years, as we banked both Daniel and Andrew’s cord blood at Duke’s blood bank with this end in mind.  We will also bank our next son’s.  (Side note: for those of you expecting a baby, if you decide not to save their cord blood for your own potential use, PLEASE consider donating it.  It is free and is a great source for research and treatment and does not involve embryonic stem cells.) Dr. Kurtzberg is at the very top of this field, and she has already completed many successful trials treating children with cancer.  This trial would not be a possibility for John if he still carried the primary mitochondrial diagnosis.  Of course, he has secondary issues as the mitochondria are certainly affected when movement and development are not typical. 

Additionally, “Dr. Jan” in Texas patiently talked to us about every detail of John’s care, from medications and supplements, to adaptive equipment, to feeding and drinking in more age appropriate ways, to communication devices, to wanting to check certain labs and do a bone age study, to needing a new baseline EEG, to bodily functions, to bracing and orthopedics, to his vision and hearing, to participating at school and in the community, etc.  She truly looked at the whole person and all of John’s needs.  This was a real gift as parents who typically have to piece together information running from one specialist to the next, without one overarching comprehensive assessment driving the plan of care.  We felt extremely blessed and came home with many good ideas we have been implementing since. 

So that is our nesting update in a nutshell.  The road can be long and certainly draining at times, but there are many gifts along the way as we see how God provides and orchestrates every detail.  Thank you for reading and for continuing to pray!  Meade and John return tomorrow, and we can’t wait to see them!  We can hardly believe we will be welcoming another son into our home in October!