Breath of Heaven

We just returned Sunday from our 9th trip to Boston for Jacob.  It was a good trip.  David and Jacob and I went, and we took Elena as well this time.  It was a sweet time for her and Jacob together, as it was last time when we took Asa.  I am so thankful for my kids and the love they have for each other.  His procedure was challenging as usual, but successful.  They treated the large main lesion in his chest, trying to keep it small and keep the pressure off his spine.  It is still working, as it continues to respond to treatment and shrink, though the effect is temporary and it will reroute and regrow.  But we are so thankful, that the treatments are still working.  We had a follow up appointment with the ortho specialist, who was pleased at the continued stable curvature of his spine (around 20 degrees).  They also treated the lesion in his right leg that they treated last time, that has caused him some pain, as well as a new one in his left knee that popped up just a couple weeks before the trip.  He has one in his neck that had been hurting him as well, that they were not able to treat, as it had already ruptured and there was only a blood clot remaining.  But overall, they were very pleased with how he is doing, and plan on seeing him again and treating him next fall to winter, depending on his symptoms.  He did well post-op, and we were able to be discharged that day. He recovered well over the next few days, is still having some intermittent pain, but less every day.  It was a good trip. 

 

 

I've been thinking a lot the past weeks about the past year.  Those closest to me know I have had a difficult time this fall.  I always struggle when we get close to going to Boston, but these past months have been more than that.  I have experienced depression before, and have spoken of it here.  I know this fall, that's been where I have been.  I have also spoken of the challenges I've faced this year at work.  That has played into this as well.  I have experienced more doubt, more discouragement these past 6 months than in my whole career.  I have personally been attacked and judged, regardless of my words, actions, and intentions.  In my darkness I have at one time or another doubted my hands' ability to heal, my mind's ability to teach, and my heart's ability to lead.  The depression has been crippling at times at home as well, and I am so thankful for my husband who understands and is there with me, and keeps everything running when I am incapable of doing so.  I always doubt my decisions with Jacob, and did even more so than usual in the weeks leading up, as he had more symptoms seemingly by the day.  I always feel so inadequate, and am crippled with fear of what could happen to him. 

My favorite Christmas song is "Breath of Heaven" by Amy Grant.  The past few years it has hit especially close to home.  In no way do I dare compare myself to the mother of Jesus, but I also identify with the words and feelings of this song.  So many times have I wondered if people look at my face when I'm feeling lost and wonder "if a wiser one should've had my place."  So many times I have known they should.  I see so many walk roads more difficult and heartbreaking than mine, with such grace and joy.  I struggle on with my lot, which is nothing compared to the suffering of so many.  But funny thing, there is no sliding scale on suffering, the validity of it is real to those who bear it.  I've even had friends make light of their problems in the face of mine, and I brush that off, as heartbreak is heartbreak regardless of its comparison to that of another.  But I struggle to give myself such grace and instead allow that comparison to make me doubt my ability to be Jacob's mom.  I know a wiser one should've had my place. 

More than this though, I identify with her words, begging for a "breath of heaven" to "hold me together."  I have searched so much the past few months, in my self-imposed darkness for a breath of heaven.  The beauty is that, as I am finally seeing clearer, as I look back over the past months, I see countless breaths of heaven on me and my family.  Things like a hug from a friend...a heating pad left under the covers to warm the bed for me for when I get home from work...a message of encouragement from a young nurse...texts and calls from my brother who understands firsthand how dark the darkness inside you can be.  Things like a bracelet from a friend to remind me I'm not alone no matter how far I go.  A friend walking into your messy house and just being present with you and helping you pack. Things like a team around me excitingly working hard on a project I have poured myself into, together giving a baby the best start at life.  My daughter's clear sweet voice, singing hear heart out.  The prayers of our church body, with hands laid on our son for healing.  Huge breaths of heaven, like a check in the mail from a church family not our own, but one moved to help us when our flight assistance fell through...a handwritten letter and gift from a colleague turned friend...and generosity of a stranger from simply finding their lost dog.  And breaths of heaven straight to my heart, from an anesthesiologist who heard my son wants to be a diver, and hand drew fish and bubbles on the anesthesia bag that would be used to inflate the lungs of my unconscious child.  This one who also gave him goggles to go with his "diver mask" so he wouldn't be afraid to breathe deep and go to sleep for surgery. 

For the recovery team who picked the bedspace so my son would wake up in the spot that has a diving picture on the wall next to it.  The breath of heaven in the form of seeing wiggling toes under the blanket of my still sleeping son in recovery.  So many times over the past months have I had a breath of heaven breathed into my life and heart.  Some breaths helped my family in tangible ways, and some I know simply encouraged my heart and cast light into my life. 

I don't know who all is reading this.  I've had as few as 50 people read my blog posts, and as many as several thousands.  I pray though whoever needs this one reads it.  I pray it touches a heart.  So many around us are hurting this time of year, and need their own breaths from heaven.  I pray that if you are experiencing your own season of darkness, that you will be able to see and feel the breath of heaven in your life this Christmas.  Much love to you all.
  

"Breath of heaven, light in my darkness, pour onto me your holiness, for you are holy.  Breath of heaven." 

One Year

One year ago tonight at midnight the entire medical team for our NICU walked out the door after a non-renewal of their contract by the hospital where I work.  There was more than a year of unknown before that day, and there were a lot of reasons behind this and a lot of politics and ugliness surrounding this event, none of which matter anymore.  I say they don't matter; they do, but there is no changing what was done, so in that sense, it doesn't matter, and I've tried to lay all of that to rest.  What does remain is the memories.  The friendships with people I miss every day.

This past year has been a challenge of which I never could've imagined.  I truly have thrown myself whole heartedly in trying to rebuild and be a part of my new team.  To get to know them and work in harmony.  At first it was so weird.  Like there were strangers in my house.  They were polite, but it was awkward, with neither side knowing quite how to navigate this situation we found ourselves in.  It got pretty rough very fast, with so many different people from so many different backgrounds and practices.  Collaboration was difficult...continuity impossible.

I was told one day in mid-February by one of our new providers, "You all have lost your groove.  It's ok, we'll help you get it back."  That was the most discouraging thought, that we were so misunderstood that someone could say that, with no respect or consideration for what has gone on here.  We didn't lose our groove.  We lost our team.  Let me say that again, WE LOST OUR TEAM.  And a step further, we lost our family.  I try to keep this grief hidden, out of respect for all of them, and also because there is no place for it here in the unit anymore.  But I feel the loss daily.  I once worked together with providers who valued my contribution to the team, cared enough about us to teach instead of just criticize.  We worked in a rhythm so fluidly and smoothly it appeared effortless.  We admitted with efficiency, even coded with hands moving together with the surety of each of our roles and the expectations thereof, and with the common goal of saving a life.  The more difficult things were, the more we held together.   This team knew our hearts, the passion we have for the calling that comes from our souls, the commitment to learning the best and providing it for our patients.  They knew the loyalty we had to each other, to this family that we chose, and the trust that comes with it.  They knew the things we've seen and done, the battles we've won and lost, the lives we've lived, and the family we are.  Do not misunderstand my words; in my heart, I know it is none of my new team's fault, and I try to never even give the appearance of thinking so.  But I just wanted them to understand.  Understand what it was that we lost, as it certainly was not our "groove."   I understand we won't always agree and do not expect that.  We didn't always agree with our team in the past.  But we discussed things as professionals, and worked through it.  Because truly, it is my honest desire to build this team again.  To once again work and move together in this work in a seamless, efficient way, providing the very best of care.  And I am encouraged because it is getting better. We've kept working.  We've fought, conceded things, learned new things, and day by day it is slowly getting better.  I try to see the hearts behind the differences, to the one thing that should bring us together...what's best for the babies.  When I get discouraged, I try to remember how far we've come this year.   I am so grateful for the people I've met this year. Especially those of you that have listened, given us a voice, and made an effort to teach us, THANK YOU.  The compassion you have shown us, and the care you exhibit has not gone unnoticed.  Taking the time to teach us shows you value our knowledge base and are willing to invest in it.  That means so much, and reflects your commitment to the building of this team.  Again, thank you.  Please know I am still just as committed as ever to building this team.  We have to be.  We need it, and our babies deserve it.

I have grown so much this year.  Learned what it means to advocate, how to be a professional when it isn't easy to do so.  Learned about myself and what is important.  And I will never stop fighting for what we can and should be.  I don't see my efforts for my new team as a betrayal of the one I lost.  I see it as the only way I can honor the people who taught me how to be a teammate.  I hope they would see what we are doing for our babies and be proud.  I hope every day to honor their legacy in the unit that they built.  

Today though, I don't think about that.  Today I allow myself to remember.  I remember what was lost.  I remember the dedication and the gifts of the people who built the unit I call home.  I remember their care and skill, their hard work and investment.  I remember countless meetings, deliveries, transports, admissions, codes, even losses, that we worked through together.  I remember limitless laughter and joy, and even tears and grief that we shared, both personal and professional.  I remember the people.  The people who went from strangers the 21 year old me was in awe of, to colleagues I respected, to friends I counted on, and finally to family that took a piece of my heart when they left.  I miss them.  Today I remember.  And tomorrow I'll go back in and stand beside my new team in whatever fight comes our way.  

I made this video for our going away party, many of you may have seen it, or may wish to see it again.  Here it is, and here is to the memories.  I love you all and will never forget. 

https://photos.app.goo.gl/GPvZWemSiaX4KF617

All thoughts and opinions are mine, and not reflective of any healthcare institution.  Any identifiable patients shown are with permission.  

Music credits: "Landslide" by Fleetwood Mac, "Best Days" by Graham Colton, and "Rivers and Roads" by The Head and The Heart

And here is some of my favorite memories from their going away party...

6 month post-op update

*Disclaimer: I wrote this in May, sorry just now getting around to posting.

I know I've been delinquent in updating, as I said in the previous post, so here's how things have been the past 6 months...Soon after our Boston trip in November, the holidays were upon us.  They were extra special this year as we decided to give the kids an "experience" rather than stuff for Christmas.  They are all huge Harry Potter fans, and have been begging to go to HP world at Universal Studios.  So for Christmas they got their owls and Hogwarts letters, and we left for Universal.  It was an amazing trip that I will remember forever.

Since then, we've just been busy with the grind of school and work.  Jacob and Luke are well into baseball season right now, which started off very special as Jacob was given the "Courage Award" for persevering his health challenges to play.  The league where they play does this every year, honoring a child with this award, and has a special time during the opening ceremonies of the season to give it to them.  This was so amazing to see him honored in this way, and we are thankful to the league for recognizing him and doing this.  We have had a lot of fun this season and are thankful for his health to be able to play. 

As May rolled around, so did the 6 month mark since his procedure, meaning it was time for his imaging.  We scheduled it here at our local children's hospital, and sent the images to BCH to his doctor for review. I was very excited as our local hospital just built a new outpatient center.  There Jacob was able to get his imaging done in our new EOS system which previously he has only had at BCH.  It utilizes lower dose radiation and produces higher resolution imaging.  I was very impressed and proud at our hospital's commitment to expanding the technology we offer to give the best for the kids in our region.

As you may remember, the last trip our doctor was so pleased with how Jacob was doing, he hinted at the possibility of skipping the next treatment and allowing him to go a year between trips.  I was afraid to get my hopes up too much, but I won't lie, I had my hopes up.  Though we will go up there as often as possible to keep my boy healthy, to the point of moving up there if we have to; I'd be lying if I said I wouldn't love to go a year between trips instead of every 6 months.  So we just got the good news this past week: the lesion growth has been minimal, and appears stable, so we do get to skip this treatment cycle.  We are so excited!  So we are going to look forward to the summer ahead, and not think about BRBNS for awhile longer.  We will certainly have to go in the fall, as he does not feel comfortable going longer than a year without seeing Jacob.  We tried that before and lost a lot of ground, so we don't want to make that mistake again.  But I am thankful for this break and am going to enjoy my boy being well.  Thank you sincerely to all of you who have prayed for him, especially of late.  I know I am quiet about him until something is looming, but know that I am ever grateful for you all who hold thought and prayer for him, whether I ask or not.  I love you all, and keep praying that we can continue to enjoy Today's Miracle.

Updates and Apologies

Well, I did it again, after our trip in October, I never took the time to post an update of how his procedure went, and somehow 6 months went by. (*update: when I wrote this...now its been 11months, sorry, I never published).  I'm always so focused on him post-op, that I don't take myself away for an update, and once we get home, life just keeps going so fast, I can't seem to get around to it.  Once things settle down, you all know my coping mechanism of avoidance, that also plays a role in keeping me from thinking about it or putting down my thoughts.  But in gratitude for all of you who hold thought or prayer for Jacob, I owe you an apology, along with an update.

So rewind to November 2...we arrived at the hospital bright and early, as he was the first case of the day.  We spent some time in pre-op, and Jacob was in great spirits.  He and his brother kept each other entertained, Jake even did some dancing on the bed!

 Before we knew it, it was time to roll back to the OR.  They had a new fancy TV back there, which they could put a number of things for the kids to watch as they go to sleep.  Upon being reminded that Jacob wants to be a diver when he grows up, and that is how we practice for anesthesia, they put a ocean scene up.

He slid over onto the OR table so bravely, and held my hand and watched the TV as he breathed into the mask like a diver. I was so proud of him and the courage he showed.  I could tell he was nervous, but just did as instructed and we talked until he was asleep.  I left him in their capable hands and found my way back to mom and Asa in the waiting room and settled in.  His procedures are always long and involved, and this one was no different.  We were kept updated throughout as usual, and by noon his doctor was out to see us.  He was very pleased with how it went, and how stable the lesions were since the last treatment.  This was the first time we have seen any stability from one treatment to the next.  I spoke before that we were hoping to be hitting the "dormant phase" of later childhood, and this stability seemed to support that possibility.  His doctor was so pleased, he hinted at maybe letting us skip the next treatment.  We have been going to Boston for treatment every 6 months for years, but he said if it stays this stable, we may be able to skip the May treatment and go for a year.  He said no promises, he still wants to see imaging in 6 months (which we can do at home as usual), and that he doesn't feel comfortable going longer than a year for sure without seeing him, but at least there is a possibility of Jacob getting a break in treatments.  We are so excited about this possibility; though we are more than willing to go as often as necessary to keep him healthy, a break would be wonderful for him.  So this was great news!

Before long, we were taken to PACU to wait for him to wake up.  That is always the longest wait for me, putting my nurse mind over my mama heart to not let myself wake him up.  He's so beautiful though, just watching him sleep.

He soon woke up, calmly and relatively comfortably...all the thanks in the world to the BCH anesthesia team to figuring out the perfect cocktail for my guy! So glad they cracked this code and we enjoyed a 2nd peaceful wake up in a row.  Hopefully gone are the days of those difficult anesthesia wakeups.  He was still having some pain as is expected but again amazed me with his bravery.  I had a moment, as this was the first trip he hasn't wanted me to climb in bed and hold him afterwards, but instead wanted his big brother.  But I couldn't be too sad as they looked so sweet together, I couldn't hardly look away.

It has been so special having Asa on this trip.  Jacob's siblings have always been such a comfort to him, and this trip was no less so.  I was so glad Asa was able to be there for Jake, and it warmed my heart to see how protective and caring Asa was of Jacob.  These new teenage years we are navigating have been filled with ups and downs, but to see Asa's care for his brother...I could not have been prouder of him.

Jacob also kept his streak alive and did well enough post-operatively for us to go home that evening!  I was so excited that he was doing so well for them to let him go.  We made our way back to the house and rested for the evening.  We stayed pretty low key until after lunch the next day, by which time Jacob was feeling well and both boys were feeling restless.  We decided to venture out and visit somewhere new we'd never explored before.  We headed over to the Harvard campus, which is always beautiful, but with the leaves turning, was especially so.

We then went to the Harvard Museum of Natural History.  We'd never been there before.  It was really cool, and ended up being a favorite of both boys this trip.  They loved all of the animals and bugs, but surprisingly they enjoyed the rock formations room the most. It was really cool.

We kept it a short outing, looking out not to let Jacob overdo it, and headed back in for the night.  The next day, the boys wanted to go to the New England Aquarium, one of Jacob's favorite places in Boston.  The hospital gave us tickets which was nice, so away we went.  We caught the penguin feeding which is always fun, and had a nice day.

We left Boston the next afternoon, and had an uneventful trip home.  Jacob was back to school within a day or so, and life returned to normal.  I look back on this trip now months later, and what stands out to me, was the beauty of my sons' relationship with each other.  Being 6 years apart, often they fight and annoy each other, but during this time, all I could see is love.  So many times as a parent, I question myself...are we doing ok, are we raising them right?  Seeing the love and care they have for each other makes me think maybe so.  I watch Asa and see these glimpses now of who he is becoming, and the responsibility I feel for him to be a good man is so heavy.  But he is such a good kid, and has such a kind soul.  Seeing him this week with his little brother was something I'll bring to mind whenever I'm blinded by the difficulties of raising a teenager.  And seeing the love between them shining through the hurt and the challenges Jacob faces is a light in the darkness.  I couldn't be  prouder or love them more.

Thank you all again for thinking of us and praying for Jacob.  We really had a great trip.  I'm thankful for my mom for stepping in and going with us this round since David couldn't.  She's wonderful with the boys, and such a support for me.  Glad to round out Boston trip #8 in the books. 

Again, I'm sorry for the delay in the update...I'll try to do better, but concede, I probably won't.  I half keep this record for myself, to remember, process my feelings, and to keep all the medical details straight (especially in those early years).  Just know if I'm quiet, were just busy over here living our lives!