Chapter 13: A Timely Gift

There is something incredibly magical about a small babies' smile.  Especially their first few smiles.  After weeks of fatigue, fear over doing the wrong things and the steepest learning curve of your life, one smile and suddenly motherhood feels rewarding, manageable and fun.  With one smile, you are reassured that they do feel loved and safe and that you are doing something right.  A baby's first smile is one of the most wonderful gifts of parenthood.  And Addie's was delivered to me in my moment of greatest need.  Her smile would sustain me through difficult days like we had not yet known.

After our isolation drama and monumental decision that we would move forward with the big surgery to take out a kidney and put in a dialysis catheter, we had a few weeks of calm before the lurking next storm.  April brought warmer weather, bigger babies, increased stability and a comforting routine to our hospital days.  I had gone back to work from maternity leave and decided early on that I would not miss a day of being with them at the hospital so my days belonged to my school and my evenings to my babies.  It was exhausting but perhaps the great blessing of fatigue is the lack of energy to worry, brood or contemplate.  It was a stage of putting one foot in front of the other and seeing the days fly by in a blur of activity.  The weekend before their surgery was Easter Weekend so it was easy to allow ourselves to become consumed in smocked bunny clothing, brand new Easter baskets, extra visitors and a copious supply of egg shaped chocolates.  In fact, those few days before the surgery were among the happiest of our days in the NICU.

Between the exhaustion and the bunny festivities, I managed to prevent myself from thinking terribly much about the surgery looming on the horizon.  It wasn't until late in the evening of Easter Sunday when the bunny clothes were exchanged for hospital gowns, the food was all packed away and the babies had been NPO, meaning no fluid allowed, for the next morning's surgery that I was jolted with the reality of what the next day, or days would be bringing.

I've often debated with myself which I have found more emotional and difficult to face: an emergency surgery on a sick baby or a planned surgery on a seemingly healthy baby.  I have always found there to be something somewhat unbearable about handing over a stable content child knowing that things were inevitably going to get worse before they could even potentially get better.  In those moments, my arms want to cling onto my child and my eyes swell up with tears as they stroll them away.  It is scary and sad to send a sick baby off to the OR but for me, to send my well child away just would break my heart and defy all my logic.  Therefore I faced that morning with a particularly high level of dread and angst.  Although I knew in my head all the reasons why this was the pathway we needed to take and that removing the kidney and placing a large plastic tube in their bellies was the best decision, it felt very wrong when the time came to do it.

There have been only two days when both babies have gone to surgery on the same day and this was the first one.  For lots of practical reasons, piggy back surgeries were the best way to approach this- it suited the surgeon and for me who was back at work and needing to take time off for their recoveries, it definitely made more sense.  The fact that it would prove to be absolute torture for my poor mommy heart simply wasn't our number one concern.  So early in the morning on Monday April 25 2011, they took Max back for his surgery.  He was gone probably 5 hours and we sat around with my parents all taking turns holding Addie, praying and just trying to pass the time.  My heart was heavy with my baby boy in the Operating room and knowing that any relief from his return would be overshadowed by the sadness of Addie taking his place.  As I sat there during those hours with Addie in my arms worrying, she did something for the first time- she looked right at me and smiled.  And smiled and smiled and smiled.  She passed the hours looking into my eyes and smiling at me.  We had caught random smiles from both of them at different times and they were both starting to flash occassional but still random grins, but these were our first social interactive back to back full fledged smiles.

And with those precious smiles, our hearts could not help but be filled with joy, despite the circumstances.  The beauty of her precious smiles became stronger than the sadness of what that day entailed and our heavy hearts lifted at the priceless gift God had planned for us that morning.  No doubt it was a gift that was reserved for our hour of greatest need- a joy we needed in that moment more than any time before.

I'd love to say that after those smiles that the rest of the day was a piece of cake.  But while the smiles sustained and blessed us, they also made the terrible job of then handing Addie over to the surgeon that much more difficult.  The few moments between Max's return and Addie being wheeled away were among the most painful I can recall.  They bring Max in on a ventilator, completely out of it and his naked body covered in 6 incisions and with a seemingly giant new white tube protruding from his belly.   He looked nothing like the little boy in his blue smocked bunny jon-jon the day before.  He looked sick, he looked sad.  And it was just heart-wrenching to see.  As they carefully placed his sore body still hooked up to machines on an open bed, they simultaneously started preparing Addie to be wheeled away.  My smiling little baby girl was being loaded up and right before my eyes was an exact image of how she would return to me.

By this time I was 4 months into this crazy new normal and I had nearly perfected my stoic demeanor during difficult times.  While I had once stared at the nurses with what one called 'sad puppy dog eyes' during heel pricks, I could now calmly offer to hold a leg down if needed.  I had begun to pride myself on my toughness. But as I stood there but a helpless witness to this scene, this poignant before and after display I was witnessing, all of my defenses crumbled down and I lost it and the sobbing began.  I have never had the gift of pretty elegant crying.  I go straight from stone faced to full blown ugly cry in a matter of seconds.  So in the midst of this chaotic moment with nurses and transport team and everyone gathering, I stood there wearing my heart on my sleeve, the tears unable to be stopped.

By the time Addie would return hours later, the tears would have stopped and the brave face would have returned, but the drama would not have settled down.  Given Max was awake and distressed by the breathing tube, they went ahead and pulled the breathing tube out.  They then placed him in Al's arms for comfort which did seem like a great idea until he got distressed and completely stopped breathing and they had to whisk him out of Al's arms to start bagging him.  As if we were taking turns having our breakdowns, Al now runs out of the room in tears.  And really for a number of days, this pattern would persist whereby Max would get upset from the pain and collapse his airway and then subdued from the anesthetic and pain meds, he would lack the drive to open it again.  It would make for a frightening and very long week before he finally seemed to be back to himself.

Addie's return was thankfully less chaotic and she seemed content to sleep off her surgery pain for a couple of days.  I would watch them both during those long days and still see Addie's perfect smiles in my head and I would pray for them to come back to me quickly.  Those smiley images would keep me company and give me a vision of what I was anxiously awaiting to see return.  And when they did finally return 3 days after surgery, those post surgery smiles were an even sweeter gift.  A promise that no matter what they would endure, they would always come back smiling and never lose their innocent joy.  A promise that, to this day, they have both kept.

Chapter 12: My Other World

There have been so many difficult decisions I have had to make as a mother.  Ironically one of the decisions I had anticipated being most difficult actually proved to be incredibly easy.  Before having kids, I had enjoyed theoretical debating with friends or family about whether I would want to be a working mom or a stay at home mom.  I brainstormed pros and cons, sure that the choice would somehow come down to my own sense of happiness and calling.  Instead, it ended up being a choice that was completely made for me.  I would go back to work, despite crazy circumstances, out of total necessity. And looking at it now I am relieved the decision ended up not being mine.  Partly because I would certainly be inundated with plenty of impossible decisions I would have to make but partly because I probably would have chosen wrongly. Leaving my two babies in the NICU an hour away to go act like everything was okay and be strong for 150 teenagers felt like the hardest and most ridiculous thing I had ever been asked to do.  But having to be strong, having to take a break from thinking about heavy stuff to ponder plant adaptations, and having a life and role outside of this new all consuming one as their mom proved one of my greatest assets for coping.  It's likely not the choice I would have made, but I can see the ways in which it sustained me and I'm grateful for my job and my one part of my old life that God enabled me to keep.

The story of how I ended up being the primary income earner actually starts when I was 16 years old.  My dad worked for an oil company and we knew that a big move was on the horizon.  One day we came home from school and they told us we were going out to eat and that the restaurant we would eat at would tell us where we were moving.  Sitting blindfolded in the backseat I was hoping more than anything we were heading to the Outback Steakhouse.  When I got there and saw it, I jumped up and down.  I was excited for the adventure and I'm so grateful I had that opportunity to live there.  I ended up living in Australia for 10 years, seven years longer than the rest of my family.  I decided I wanted to be a teacher in Australia and had my first three years of working there.  I made friends I still consider to be my closest friends there.  And most importantly, I fell in love there.  I started dating Alister when we were 18 and 8 years later, we were very excitedly planning a wedding.

We were both teaching at amazing private schools in Australia and content with our careers and our lives. But our happiness was cultivating big dreams in us.  We wanted a house to fill with lots of babies.  They had long been named and we spent our final carefree childless years to talk about anything other than the kids talking about our imaginary future children.  Every trip back to America was making the cheap housing and delicious Mexican food in Houston seem more and more appealing.  Al's family was in Australia and mine was in Texas and I was feeling ready to live in the same city with them again, especially as wedding talk and baby dreams were taking over my life.  So we did what was both brave, and arguably slightly stupid but no doubt God ordained- we sold everything we owned in Australia and moved to Houston job less with a couple of suitcases.  

Thankfully I ended up in a new teaching job pretty quickly.  A friend of my mom's needed a long term Science substitute and from there I ended up with a full time position as a Biology teacher.  It was a tough adjustment from teaching Psychology at my small nurturing private schools to now teaching Biology at the big public school and I certainly had days where I did not love it and terribly missed Australia.  I never stopped being grateful for the job, however, as Al's quest for a job was proving much more difficult.  Immigration concerns initially held him up and then bad luck getting very close interviewing for jobs but not landing the job meant that he ended up subbing full time.

Looking back at it now and knowing how it would all end up, it's easy to wonder why we thought it was a good idea to go ahead and start our family without him being in a permanent position in a school.  At the time though, our desire for babies and our intense optimism that a job surely could not be far away were stronger than our fears.  I knew while pregnant that as the insurance holder I would end up needing to go back after the babies came and I was okay with that.  It seemed like a temporary plan and back then I felt like Superwoman so clearly I could work full time and raise twins.  Piece of Cake.

Of course as the weeks passed after my C section and my inevitable return to work date loomed, I started to feel like anything but Superwoman.  Staked out at my NICU post, it seemed impossible to just not show up there one day to instead go to work. But, I also understood that being a parent and loving your kids doesn't just mean holding and kissing them,  it also means working to have the means to meet all their needs.  I knew that my job is how we would hold the health insurance that was saving their lives. I knew that my most important job of being their mommy meant doing my other job of teaching Biology as well as I could.  So, in March, about 12 weeks after they were born, I went back to work.  And there have been many absences along the way, but since then I have continued to work full time and prioritize my job during crazy circumstances.

I remember that March walking into my classes and having students run to hug me and tell me how much they missed me.  I remember having students that were out of control from having had a lot of subs.  I remember feeling like I was drowning in paperwork and meetings.  It was very stressful but in its own way it was soothing.  I would drive to work so upset and worried about my babies and I would be feeling awful about not being there and my head was such an emotional and frantic place.  But once I stepped in my classroom, there was simply no time to think about that.  Because 30 needy teenagers were there demanding my attention.  Sometimes they would distract me with their sweetness and hilariousness.  I would find myself caught up in their innocent joys and dramas and be smiling away.  Sometimes they would distract me with their deviancy and behavior issues.  I couldn't think about anything those days but who, oh who, drew a life sized drawing of Osama Bin Laden on my lab desk and what, oh what, to do about that.  Either way, through their charms or their challenges, my students forced a break from my worrying and emotional pain and I desperately needed that!

When friends were hard to keep up with and time to socialize non existant, my short work lunch times and staff meetings would become by greatest social support.  My friends I saw at work were the people I told everything to and the people that would love me through the highs and lows.  Going back that March I realized how much I did need that and to this day, it is still a huge support system in my day to day life.

By Friday nights, I am so exhausted I feel like it would be completely reasonable to go to sleep at 5pm.  There are still days when I would rather hide under my desk and cry than keep teaching.  There are students who make me want to pull out my hair.  There have been days of sitting in an ICU chair with a laptop trying to analyze grades when my baby was dangerously sick.  Teaching while going through these medical crises has been draining, difficult and at times, defeating.  And yet I know it has also been a tremendous blessing.  I know that it has been exactly what I have needed.  So I'm thankful I never had a choice.  I'm thankful that I never needed to finish my pro/con list and really decide what I wanted.  Sometimes what we want and what we need are entirely different things.  I'm grateful for the blessing of distraction, the gift of teenagers and teachers, and the very true idea that what does not kill you, will in fact make you stronger.

Chapter 11: Drinking Pennies

I've always found it remarkable how quickly one can adjust to an entirely new set of circumstances and start to establish routines and a level of comfort.  Hospital life that had once felt so daunting, emotional and stressful had within a couple of months become oddly comfortable and enjoyable.  I was still on maternity leave so the lack of other stress and pressure in my life allowed me to immerse myself in Max and Addie's new world and to face the new challenges with an single minded devotion.  I drove to the hospital with a sense of purpose, I fed and held my babies and savored each moment, I researched and made sense of everything the doctors told me, I befriended the nurses and made Max and Addie's little corner of the hospital look as home like as possible with their personalized blankets, painted wooden name signs and pictures and toys.  Walking into their hospital room stopped feeling medical, it just felt natural.  It was where I got to love on my babies and therefore I drove to the hospital with happy anticipation, excited to be where my heart was living.

Medically things had settled into a routine as well by late February.  Addie no longer needed her feeding tube so she was drinking her bottles and acting like a completely typical baby. She needed two long IV infusions every day to replace the proteins that her kidneys were frantically dumping into her pee but if you did not see the IV line attached to the central line in her chest you would have no clue she was anything other than healthy and happy.  Max was far less stable but even his Max attacks had become so frequent that it no longer felt like a crisis but rather merely an hourly event.  Then I fed my baby, then we bagged my baby back to life because he stopped breathing, then I read to my baby and then it was lunch time... this was just how it was. And I was okay with that.  I was remarkably happy even during this time.  Most of the initial shock and pain of their diagnosis has worn off and the future hurdles seemed so far away that living in the moment, truly taking things one day at a day was very manageable and enjoyable.

In fact, I had so settled into my NICU life that I managed to be caught completely off guard when reminders did come that in fact my children were very sick and that they were in reality living in an Intensive Care Unit and that their precious adorable lives were indeed at risk.  My happy routine came to a jolt in mid March when routine bloodwork revealed that Addie had virtually no white blood cells, meaning her immune system was essentially depleted.  This began a panic fueled spiral of events.  Initially they feared that this must be because she was currently sick and searched for a source of infection.  When that quest yielded no answers, they decided that although not currently sick, she was almost certainly at imminent risk of getting sick as she lacked the ability to fight anything off.  If I was unclear of how serious the situation was, the doctors harped on the phrase 'life threatening' and ensured that I quickly matched their level of concern and fear.

To try and minimize the likelihood of Addie catching any sort of infection from the other babies around her, she was moved into an isolation room.  Essentially the solitary confinement of the NICU, she and Max were in separate room across a hallway.  In order to be in her room, we had to wear plastic gowns and masks. Gone were the welcomed distractions of a busy pod full of other babies and families.  Gone were the relaxing hours spent holding her or Max while playing with the other one.  All the efforts to make our little hospital nook feel like home and we now found ourselves in a sterile white walled closet sweating under plastic layers worrying about when she would start getting sick and what would happen.  The comfortable routine was so abruptly replaced with the sobering reality of living in an ICU.

Thankfully though, Addie's time in isolation ended up being only cautionary and she never became sick. And her release and freedom came from a very unexpected source.  While most of the doctors were busy managing her white blood cell count and preventing complications from it, one neonatalogist (preemie specialist) started researching WHY Addie had such a low white blood cell count.  She stumbled upon a very treatable answer.  She proposed that one of the things that Addie's kidneys were dumping out was her copper binding proteins.  This resulted in her having very low copper levels (for some reason this seemed to happen to her but not Max).  Copper is responsible for stimulating white blood cell production in the bone marrow.  Without copper, Addie's body was not continuing to make white blood cells and thus at constant risk of developing the life threatening infection we were all worrying about.

The solution was simple.  Drink Pennies.  We had to pour Copper in liquid form into Addie's nightly bottle. It make the milk smell like a roll of pennies.  I felt so bad for my sweet baby as I held her and poured the penny milk into her and watched her scrunched up annoyed face that her beloved milk had been ruined! But, as soon as the Copper milk came into existence, Addie started making white blood cells again and she got released from her solitary confinement.  I had never been so excited to be back in the normal NICU room full of babies, pink blankets and windows!  It felt like paradise! And no one used the phrase 'life threatening'- well at least they used it way less!  Who would have thought that drinking pennies could save the day?

Our little more than a week in Isolation was a turning point though in the course of treatment for Max and Addie.  While we had been continuing with the plan of replacing what their kidneys peed out, the addition of this new copper dilemma and more medication led us to the point where we decided their kidneys were just causing too many risks and issues and it was time to move towards removing their kidneys and starting them on dialysis.  It had become clear that despite the moments of finding comfort in this hospital life, that it was truly no way for them to live. For me, our time in isolation was the wake up call I needed that it was time to start looking at the more aggressive but more home based treatment alternatives.

The decision to move towards dialysis appropriately brought us back to a small conference room with our old friend Dr Doom and Gloom.  I came to this meeting more prepared, dressed appropriately and well rested, and with a beloved NICU nurse sitting next to us for moral support.  I was determined that it would be a better experience than our last conference room confrontation.  We left the meeting with a plan. We would take their first kidney out on April 24th and place a dialysis catheter in their abdomen.  Then we would wait a month or two and let the new catheter heal before we removed the second kidney and started them on dialysis.  Our goal would be to have dialysis running smoothly and them both home before the end of that summer.

Although there is some inherent comfort that comes from feeling like you have a plan, we nevertheless left the meeting with a fair amount of anxiety.  One of the characteristically melancholy things that Dr Doom and Gloom told us was that there are a lot of risks for babies requiring dialysis.  He told us that 10 years ago, the likelihood of a baby on dialysis making it to their first birthday would be about 50%.  While he say that things have improved in the last 10 years, I know Al and I both left with that 50% echoing in our heads.  Two babies on dialysis.  Please let them both get to celebrate their first birthday.

I'm glad we didn't know then how many close calls the next year would include.  Although, I wish we had known then as well as we know now just how many miracles the next year would include.

Chapter 10: Maximillan the Chameleon

One of the most intriguing aspects of kidney disease or disorders was that my children could be so sick and quite realistically battling life or death problems and yet look and seem perfectly healthy and normal!  They were in the NICU with all these tiny babies hooked up to intense breathing support and looking so sick and fragile and then they were there big and round and pink gulping down their bottles and wearing precious designer baby clothes their Nana bought them.  The central lines giving them life saving medications were now buried under their soft little onesies so any outward signs of illness almost seemed gone.  Our friends and family would come visit and they would remark how healthy they seemed.  And for a few minutes they would be lulled into thinking nothing was very wrong.  Then right around when they started to relax with this whole sick baby thing and think maybe it wasn't that stressful, Max would give them the scare of their lives and they would leave feeling all kinds of shaken up and convinced once more that the babies did in fact need to be in the hospital after all.

These moments had nothing at all to do with their kidney condition though.  It had to do with Max's other big issues which had seemed so important earlier on when we were frantically searching for answers to explain his respiratory issues. Once we accidently stumbled on the kidney condition and Addie got so spectacularly sick, our focus diverted to these new issues and Max's mysteries took a place more in the background.  Our lack of focus on them did nothing, however, to dampen the severity of them.   So as the dust began to settle at our new hospital, we started to once again attend to Max's scary respiratory issues.

During one of our first few days at the new hospital, one of our favorite nurses coined a new phrase for Max's issues- she would call them a 'Max Attack' and the name immediately stuck and even the doctors would refer to them that way in rounds.  A Max Attack was a much cuter term than the appropriate medical term which would be apnea leading to bradycardia or a lapse in breathing that would cause dramatic heart rate drops and even more dramatic color changes.  What would happen is that Max would get mad. Max is still very sensory sensitive and any sort of sensory overload would set him off and living in a loud well lit crowded NICU meant that he seemed unavoidably triggered many times a day.  Sometimes even having to poop or move would upset him.  He would start to cry.  His face would turn beet red.  Then as he opened his mouth bigger and bigger, it would seem to get stuck there. He would look like a flaming red statue, all of his limbs incredibly stiff.  Then as he held that for more seconds without oxygen, the red would transition to a bright purple, then a blueberry blue.  As he continued not breathing, the blue would turn paler and then duskier, a gray blue before he would finally pass out and the stiffness would collapse and he would be sheet white.  It was truly quite a display.  Another wonderful nurse nicknamed him Maximillan the Chameleon for his capacity to be so many different colors.

Max would start this process initially many times a day, probably once an hour.  If you could calm him down before he got too worked up, you could often prevent the full experience.  Al and I became experts at spotting the turning red phase and trying to hold and console him back to calm before any trace of the blue came on.  Often we were successful.  Other times he would truly turn blue but we could get him to calm and catch his breath before he would pass out.  But there were times when we just could not get him to breathe again and he would go all the way to passed out white and then the nurses would have to 'bag' him meaning they put an ambu bag which looks like a mask with a balloon attached and they make a tight seal and start pumping the balloon which is attached to an oxygen tank.  It is basically sending high pressure intense oxygen at him to try and trigger him to take a breath himself.  Sometimes the nurses would get him breathing in just 5-10 pumps.  Other times it would be a minute or more of pushing the air in before he would respond and breathe. In those early months it was 8-10 times a day that he would need to be bagged.

In early March, we finally had to have more answers as to what was going on because he was now past his due date and still doing it so it no longer looked like a typical preemie behavior pattern.  He went under anesthesia and they were able to do a scope or put a camera down his throat.  They diagnosed him with 'tracheomalacia' which means he had a floppy airway.  When he would cry, his throat would close on itself. They were able to get images with his windpipe completely shut during the scope.  And as long as he stayed upset and crying, it would stay shut.  If we could calm him down, he would relax and be able to breathe again.  At the time, it was something of an enigma why passing out did not immediately open his airway. Generally once someone is passed out, that tightness should relax and they should breathe again.  Max would pass out and just continue not to breathe, which we know think was caused by his brain not receiving signals correctly.  In those cases, the only thing that we could do to bring him back was use the bag to deliver enough pressure that we could actually pop his shut airway back open again.  There would have been more invasive things that could have been done at the hospital had that not worked but very thankfully he responded to being bagged every time.

Watching Max go through that was so heartbreaking and terrifying initially.  While it never became easy or pleasant, I will admit that we did become somewhat desensitized to it, and we needed to.  It happened so frequently you just could not emotionally sustain being completely traumatized that many times a day! Plus the more times it would happen and he would be okay, the more reassured we felt that he was in good hands and that there was no real need to panic.  In fact, within a couple of months, I think visitors were as scared by Al and I's lack of panic as they were by Max's color change display.  They would stare at us with huge eyes and wild fear as we would calmly pat his back while he was this intense purple statue.  I know I have many friends who could still tell you about the day they saw Max turn blue for the first time as a memorable life event of their own!! Max attacks would persist for a long time, although they did gradually become less frequent.  By the time he came home from the NICU, they were occuring a few times a week and we bagged him for the last time when he was around 14 months old.

I am so grateful that we had these amazing nurses who helped us see them as just a Max attack, just one of those things he does, who taught us how to be calm and help him get calm (and how to rescue him if it came to that) and who even allowed us to have a smile and chuckle with endearing names like Maximillan the Chameleon.  They had this way of turning the terrifying into the manageable and helping us see truly crazy intense situations as just part of life.  I don't know how we could have handled all the Max attacks without that!

I Praise you God Because and I Praise you God Even Though...

I praise you God because you have worked mighty miracles in our lives
I praise you God because you have spared the lives of my fragile children
I praise you God because you have answered our prayers for healing
I praise you God because there is joy every day and hope along the way

But I also praise you God even though there are still trials
I praise you God even though my children still face developmental and medical challenges
I praise you God even though at times I feel weary and tired
I praise you God even though life is so far from what I had once dreamed

I praise you God that you blessed me with two babies who were the desire of my heart
And I praise you God even though they were born so sick

I praise you God because we survived this
And I praise you God even though we had to endure this

I praise you God that you healed Addie beyond our expectations
And I praise you God even though we have not seen that same healing in Max

I praise you God that Addie is so healthy and vibrant
And I praise you God although I still long to hear her speak

I praise you God every time I see Addie run
And I praise you God even though they tell me Max never will

I praise you God that Max has has the most joyful smile
And I praise you God even when we cannot see the smile and know he is in pain

I praise you God that every day I laugh and feel joy in my life
And I praise you God even on the days I feel sadness and loss in my life

I praise you God because you blessed us with amazing families and friends
And I praise you God even though I often feel lonely walking this road

I praise you God because you answer my prayers
And I praise you God even when the answer is hard to hear

I praise you God because you are mighty to heal
And I praise you God even though sometimes you do not

I praise you God no matter what, in every high and in every low
I praise you God not merely because of the miracles
I praise you God simply because you are God.
I praise you God because life is definitely hard but you are truly good.

I praise you God Because, and I praise you God Even Though and I praise you God Always.