Advent Thoughts or An Exhausted Mother

Well, I started bawling in the car as I pulled into the garage this morning after bringing Ades to school, so I figured it was maybe time to internally process a bit.

It was surely affected by the terrible night of sleep last night and my exhaustion – James had a rough night with what sounds like what I imagine croup must be – and I am not operating at 100%.

And it was also influenced by the Christmas music I was listening to and the yearning for Hope.  The fears and tragedies in our country coming home with me as I try to think and feel and imagine what others are going through, and alternately wanting to turn off my heart because I don’t have enough.  I can’t feel all the feels.  Too much.  Too little.

As I held James, poor James, last night and he wheezed and coughed and cried, I was reminded how very very sad it is to have a little one in pain.  And then I thought about Ada, sleeping peacefully in the next room, and how months ago I would have been *terrified* for her, as I fought hard for four years to protect her from sickness, primarily of the respiratory type.  She had two flu seasons of Synagis shots, protecting her body from RSV.  And each season I would wince when I heard a hacking cough, and move to redirect our path away from those who were ill… which was hopeless once the sick came into our home and family.  Yeah, I was a bit over the top and protective.  But who wouldn’t be?  Considering the situation, considering the alternative.  

We missed play dates.  Nick and I rarely attended church together that first year of her life, as one or the other was on Ada duty in order to keep her from the germy nursery and snot-nosed little cuties she would come in contact with.  Little by little we could relax our stance, but the fear was still there.  My own personal loneliness or isolation or sacrifices were real – but honestly, it was a no-brainer.  We didn’t know what we were doing and didn’t know what the outcome would be, but we knew that Ada’s heart condition was serious and worth any amount of protection and care.

Two weeks before Ada’s last surgery, James got pretty sick.  Fever that didn’t go away, ear infection.  He shared the ear infection with Ada and we prayed with such fervency for her.  The day before Ada’s open heart surgery, James was so sick that I called his pediatrician – a professional that lacked a specific set of
“bedside manner” skills that would’ve made the call less sucky and heartbreaking, as he said that they would need to see James in the morning.  Yes, I sobbed then, too, and explained where Nick and I would be.  James’ aunties brought him in and eventually the antibiotics helped him out.  Our dear boy.  But we needed to be with Ada June in those days.

But today.  Five months later, and we have heard from Ada’s new cardiologist in Minnesota that we can treat her like normal.  Normal?  What is THAT?  I don’t know how to do normal.  So far, normal has been coming to a place where I am scared and fearful, and I have to tell myself to calm down.  Everything will be okay.  Someone drops off their sniffling child in the preschool before us, and explains that the boy’s cold is in its second week and just won’t go away, so here he is…. And I drop off Ada, and pray, and tell myself to let it go.  She will get a cold, and she will be fine.  And that is normal.  Or James gives his sister kisses on the mouth to say he is sorry for hitting her on the head with his hand/toy/book/crochet hook/spoon/ball – and then he wakes up in the middle of the night with some crazy respiratory coughing and wheezing.  Lord help us.  But this is normal life.  

So I was exhausted. The hours of sleep we got last night could definitely be counted on the fingers of one hand.  And I heard some Christmas music – I don’t even remember what song it was!  But I wept aloud, with only James as my witness.  Oh, I need Jesus.  I need Him to come save me and save the world.  It is my life and my family, and it is the grieving parents and the scared refugees and the lonely coworker and the momma in the hospital watching her son fight and the momma-to-be carrying the baby whose condition is so like my baby’s was.

And we all need HOPE.  We do.  Some of us are desperate for it.  Oh, cry out, my soul.  Too many moments and days I am trapped in fear or fatigue.  Or busyness!  More often, busyness.

And in despair I bowed my head; 'There is no peace on earth,' I said; 'For hate is strong, and mocks the song of peace on earth, good will to men!'  Then pealed the bells more loud and deep: 'God is not dead, nor doth He sleep; The wrong shall fail, The right prevail, with peace on earth, good will to men.'

 

Truly, He taught us to love one another.  His Law is love, and His gospel is peace.  Chains shall He break, for the slave is our brother, and in His name, all oppression shall cease.

Sweet hymns of Joy, in grateful chorus raise we.  Let all within us praise His holy name.  Christ is the Lord.  O praise His name forever, His power and glory ever more proclaim.

O Come, o come Emmanuel...

What a ride...

Over a month has now gone by since my last entry, and it is almost unbelievable.  I just crept in to the kids' bedroom to find Ada soundly sleeping.  Peaceful.  Normal.  I don't know how many times in her life I have crept in to see how she was doing as she slept... checking to see that she was still breathing, still alive.  Yikes.  Seems a little morbid?  Yet I have talked to many other parents about this habit, and it seems to be a pretty normal thing- though my assumption is that someday, some year I will be able to sleep through the night again?!  To lie down and sleep in peace... what a dream come true!

Ada's Fontan procedure has become a part of her history, praise the Lord.  The looming event is now past, and it really seems now like a crazy dream. Tomorrow it will have been five weeks ago.  Aaaand it feels like a lifetime ago.  A huuuuge part of that is the fact that our house is now half packed and we are 2 weeks from becoming Minnesota residents.  Yikes again.

The short story is that Ada's second and final open heart surgery went as planned on June 22, with little to no major complications resulting.  She had a stay at Children's Hospital of 12 days, which was well within the realm of normal.  Twenty-four hours after surgery was completed, the nurses had Ada up and WALKING.  As the days went on, she was able to take less pain meds and showed more of her personality (it was a celebration to hear her feisty self return!)  The last few days we were simply waiting on her chest tubes to slow their draining of fluid so that they could be pulled.  Since being discharged, Ada has gradually weaned off oxygen as well, and is only given a diuretic once a day.

She can run.

See, this is the thing.  Ada is four, and our eldest child.  So we have compared her activity level with other kids, but also have not known what is just her personality, and how she has been affected by her heart anatomy.  Before the surgery, Ada would run - maybe a half a block? - and whine and ask to be carried.  Or she would start to walk - saunter, really - but would get winded fairly easily or quickly.  Now she can run and run and run!  (We may have spent more than we should have on a pair of toddler shoes that will only fit her for a few months, because CELEBRATION, that's why.)  And she can dance and dance.  She has not had a shift in her behavior or attitude or personality, which I was wondering about... wondering how she had been affected by perhaps feeling somewhat crummy all the time... but we are so thankful anyways to have our spitfire of a daughter back home.  Her spunk was so evident in her hospitalization, and I have to think that the strength of her character has served her well these past years.  I paraphrase Napoleon (?) when I say, "Let her sleep... for when she wakes, she will move mountains."  Watch out, world.

This parenting thing is not for the faint of heart.  I remember how scared and overwhelmed I felt when we walked out of the hospital for the first time with Ada, feeling as if we were certainly breaking some law, and that I was going to majorly mess something up for her.  The first year of her life was a struggle first to get her to grow, and then post-surgery to keep her healthy.  And the next cold and flu season was the same story.  And this winter and spring was laughable (I wasn't laughing though, let's be clear) with how much of the time we had sickness in our home.  Seems as if a certain young family member liked to touch every germy thing and put everything in his mouth.  And then another young family member could not not kiss her brother.  Figures.  Oh, the work of it - the work of caring for my children.  And the work and worry and avoidance and effort involved in protecting Ada and keeping her healthy for the surgery that would change the trajectory of her life.

And there I was, a few days after surgery, sitting in Urgent Care, receiving the news that I had a 103.7 degree temp (that is Fahrenheit... for those of you looking for a Celsius conversion, I am pretty sure I was at about 9,000 degrees.)  Strep, perhaps.  The doctor forbade me from going back to Children's to be with my daughter until I had been temperature free and on antibiotics for over 24 hours.  Suddenly, I was the danger.  I wept as I drove home, knowing that as much as I wanted to be with Ada and felt that she needed me in the days of recovery, I also knew that I could put her at great risk if I ignored the warnings and showed up at her bedside.  Two days later, though, I was back.  Nick was a rock star, staying at Ada's bedside throughout, night and day.  It was exhausting, for sure.  We were relieved to finally be released as it meant that we wouldn't be interrupted in the middle of the night for checking vitals, etc.

We had been able to meet with the surgeon prior to surgery, and he talked us through our consent forms we needed to sign.  We watched as he filled in the blank for our other options... none.  "You don't have to do this surgery, but if you do not, Ada's oxygen levels will continue to drop."  He was honest about possible risks and complications.  It was very solemn, yet we knew that this Terrible that was looming in front of us was necessary and couldn't be side-stepped.  Our Ada-girl would have more energy for life.  Four and a half or five hours later, a team of excellent surgeons, doctors, nurses, and assistants had finished an amazing, miraculous surgery that is unbelievable and that has already helped my daughter to RUN.  Perhaps later I will write more of the particulars of the surgery and of Ada's heart anatomy for those who are interested.  But for now, I sit amazed that we are on the other side of this thing.  Hugely stressful, scary.  But so amazing.  We are so thankful for all the prayers and support and love from so many of you! 

Yesterday, Tomorrow, and Monday

Yesterday was Ada’s heart catheterization at Children’s Hospital.  All went very well, though the day was pretty tiring and was a longer ordeal than I had been expecting.  The procedure is a same day event – Ada was put under anesthesia and the doctors fed a teeny tube up through her femoral artery and down through her neck one (love how medically sound I am) to access her heart and measure pressures, take pictures, and in general prepare for the upcoming surgery so the surgeon knows exactly what he is getting in to.

For me, the most difficult portion was bringing Ada into the OR and holding her while they administered the first sleep meds through a mask.  She had been all sweetness and calm until we got into that bright and unfamiliar room with lots of people  - then she clung to my neck and wouldn’t let go, and fought it all the way until the meds kicked in – really, only about a minute or so.  Nick and I agree that we are still glad we could be with her when she fell asleep and when she woke up.  

While taking measurements, Dr. Miller noticed that there were a couple of collateral veins that had formed, one that would need to be blocked off so they inserted a coil into the catheter and the coil will block off the path, preventing blue blood from mixing with red blood.  That also went just fine, thank the Lord.

Ada also had an EKG and an echocardiogram while she was still sleeping, so that will be one less thing for us to do with her tomorrow in her pre-op appointment.  She came out of anesthesia just fine, but quite thirsty and hungry and it was difficult to keep her still and flat on the bed for the four hours that were required to make sure that she would not start bleeding from the sites in her neck and groin.  The night went well, though before falling asleep, Ada did weepily ask about the man with the mask and why she was holding on to my neck.  Poor girl remembers the experience of getting the sleep meds, so we are hoping that this next time around the anesthesiologist changes the plan a bit, as Ada has most adamantly stated that she does not want to go back to the hospital because of the man with the mask.  Oh dear.

Tomorrow, Friday, we go back for pre-op, for blood draws, chest x-ray, consultation with the surgeon, physical, and a tour.  It should be shorter and less stress, though the blood draw portion of life is about the low of the low for me.  Yes, I have passed out getting an IV, so I am a wee bit needle shy.  Ada is seriously a champ, you guys.  And as I walked around Children’s yesterday a place filled with so much hope as well as pain we saw many sick kids and their care-persons, I couldn’t help but see the strength and resilience of these little ones.

Monday is the surgery, 8:30am, I am pretty sure.  We had some good conversations with a doctor and a nurse who see nothing but heart patients, and are very familiar with Ada’s specific heart anatomy and the Fontan procedure.  Her heart anatomy is so rare, that even when we talk to people who know people whose nephew/neighbor/cousin/friend have heart defects, they are not always similar enough to relate to what we have seen in Ada and what we will see.  There is of course a touch of that familiar human emotion of “you have no idea what we’ve been through” that I have to fight off, because if there is anything that I have learned in these last years, it is that I have no idea the amount of pain and heartbreak those around me might have been through or might be in the middle of.  

We will update on Monday as we have time and ability.  I do have specific prayer requests for those who are interested and available to pray:

-         - Pray for Ada’s psychological and emotional well-being, or that we would be able to communicate what we need to in an appropriate way, and that she can communicate what she is feeling and what she needs as well.  She is four.  But she is so aware and so observant, and I know she is taking this all in.  Specifically, pray for the next experience on Monday of her going under anesthesia, as she has had an experience now that was quite negatively stressful.

-         - Clearly, pray for the hands of Dr. Jaggers and the other assisting docs and nurses during the surgery, that they would have wisdom and success in the intricate details of the surgery.

-        -  Pray for Nick and I as we need to be strong for little Ada, but it is so hard to be in the position of powerlessness.

-       -   Pray for us to feel and/or know the presence of the Lord.  These last couple months have been pretty tough, and I am pretty "dry".  We need Him.

Surgery and the Move

Oh, this sad, sad, forgotten blog.  Days and weeks and months and years have flown by and I have not properly processed life internally or externally, or so it seems.  I have discovered as I have grown into more of a conscious and aware adult (sometimes I am) that there are days that I don’t know how I am until I write it out.  There’s an internal processor for you.  I journal MAYBE once every month- or two- and I would say that about 90% of those entries begin with alerting my reader (no one) that I am sitting in a coffee shop for some much needed time away with my journal, a nice pen, and a cup of warm coffee.  Seriously.  That is the first paragraph, explaining away how I have been so busy and how I dearly need to figure out how I am.  I then rattle off stream of consciousness for two to three to four pages, and generally abruptly cut it off in order to start the next page in my journal as either a to do list or a new budget plan or something else more pressing and practical.  ‘Tis the season of life, I suppose.  I think it has been a few months or years since I had much margin in my life.  Waa, waa, whine, whine.

I have wanted to write to the great and grand world out there and wax eloquently and think deep thoughts and inspire others to do the same.  Full disclosure: I haven’t had many deep thoughts of late.  I also haven’t slept more than four hour stretches for ¾ of a year, so I think those two things are related.  So this entry will disappoint if you were hoping for some inspiration.  This is merely a catch up on the life and times of our family, as there is a lot going on and a few of you who would like to hear!  And then maybe later I will share some deep thoughts, but I’m pretty shot at this point!

James- We added to our number ten months ago, and he is a little charmer.  Happy, inquisitive, content, and just entering a little stage of separation anxiety, so that should be fun.  Two bottom teeth and dark hair that sticks straight up on top, Mohawk-esque.  He is a spitten image of Ada when she was a baby, but all boy.  He can clap, crawl, click his tongue, and I promise you he says “Ada”.

Speaking of, Ada- she is nearing her fourth birthday and knows who in the family has to have birthdays first before her birthday comes.  She is bright and beautiful, sings and has an active imagination.  She has entered the age of the “why” questions.  Ada loves to help out with cleaning and kitchen projects and basically wants to be everywhere I am, doing whatever I am doing.  I need reminders that this is a precious stage, and that this too shall pass.  She is doing fairly well health-wise, but it is clear that her heart needs the next surgery.  She will tire out just walking up the stairs of our house or walking a block at a brisk pace.  Surgery is slated for June 22 at Children’s.  We will have the same surgeon, and feel comfortable with the staff at Children’s, as our first experience went so well.  This surgery is called the “Fontan”.  In general, this surgery is the final, and it connects the inferior vena cava to the pulmonary artery so that the end result will be a long loop…. Blood will leave her heart and go to the body and the lungs and back, rather than in our hearts, where there are two circuits- one to the body and back, one to the lungs and back.  Her blood oxygen levels should be much improved and I am hoping that she discovers that she feels much better overall!  It is hard to know with little ones, especially as she has never known what it feels like to have high/normal oxygen levels.  Length of stay in the hospital could be five days to five weeks, depending on how her lungs handle the increased blood flow to them.  So, a lot going on with our precious first born.  There is obviously a lot that I am feeling right now as the mom, as one can imagine.  We need wisdom in knowing how to prepare her for this surgery, as her experience will be one that she will remember, unlike her last surgery at 5 months of age.

And then the kicker- Nick got a transfer with work!  Bittersweet, to be sure.  He will be continuing with the same company, but working out of the Twin Cities in Minnesota.  Yes, folks, my homeland.  For years we have had it in mind to make a move to Minnesota and now that it is a near reality, my mind is spinning.  On the one hand, I am excited to reconnect with family and friends as well as places that I hold dear.  And on the other hand, now that it is happening we are feeling the pain and grief of leaving a place that has been home to Nick for his whole life and for me these past ten years.  Nick has already begun his work out there, flying out to MN for the weekdays and back to CO on weekends.  Largely due to the surgery that we have been planning on for so long, we have decided that we will not move as a family until after the surgery and hospitalization and hopefully a bit longer afterwards as well, as Ada has many adjustments to face.

We will have more to say and will use this blog again for giving information, particularly as the day of surgery approaches.  Please pray for us!  Oh, and bring by empty boxes, come July.  Our previous move was just long enough ago that we gave all our moving boxes away!

Peace…