Saturday, August 16, 2014

Chapter 22: Extreme Parenting- Life in our Gameroom Hospital

Four days after Max came home from the hospital, Addie was able to join him.  Her homecoming was far less dramatic than his and she was as calm and happy about coming home as the precious photos of her in a floral smocked dress and perfectly coordinated accessories would suggest.  It was one of the most surreal feelings that Sunday afternoon once we were home and unpacked.  We sat there on the couch with both babies and didn't quite know what to do with this blissful new freedom.  It had been eight months since I had been home on a Sunday afternoon and all our experiences of holding our babies including a room full of company, alarms and at least nearby flurries of activity.  Now our home seemed so refreshingly but eerily quiet and the fact that these precious babies were at last together in it felt both extremely exciting and somewhat unnerving.  We sat and soaked it up, smiling, feeling grateful and triumphant.  For those few minutes, we savored the milestone.

And then we got up off the couch and we carefully mixed up special formula for babies with kidney issues.  We spent half an hour cajoling to get them to begrudingly drink less than an ounce before we then set up their feeding pumps and primed their food and made sure they were fed.  We lined up medications and took great care in ensuring that each baby got their correct dose at their correct time.  We designed systems for how we can do all of that without error.  Then we went upstairs to what was once a game room but had now been coverted to our little home hospital.  Two cribs and two dialysis machines and two IV poles dominated the room and made the lingering couch and television look suddenly out of place. We put masks and gloves on and helped each other hold down a baby one at a time while we changed the dressing around their catheter sight, carefully cleaning it and applying antibiotic cream.  We then temporarily removed the masks and gloves and stripped each baby down to weigh them.  We recorded the weight on our trusty chart and then took each one's blood pressure.  With that information, we then determined how much fluid we thought needed to be pulled with dialysis and made decisions about how to set up their machines. Since we were still so brand new at doing this, we then exchanged texts with our wonderful dialysis nurse and confirmed we had made the best decisions.  Then the gloves and masks went back on and we meticulously set up their dialysis machines, calibrating them to their needs that day.  Then we lathered everything in iodine and cautiously connected each baby to their machine.  A lot of buttons were pushed, sweat was collecting under our masks and finally they were running on dialysis.   They were now going to spend the next 17 hours within 6 feet of their machines in the gameroom hospital. We sat there with them, holding them, playing with them, watching the machines carefully, addressing any beeps or issues that would occur.

And once they were all sleeping, I left Al upstairs to sleep next to them, and snuck down and get some sleep while always listening for beeps and worrying about how they were doing.  My alarm went go off at 5am and I got dressed and left for my teaching job.  The Monday after Addie came home was my first day with a brand new set of students so it was enthusiastic introductions, repetitive rule emphasizing and high energy and activity.  As soon as the students left for the day, I ran to my car and hurry home to my second job waiting for me.  Hug and kiss the babies.  Soak up the novelty of them being home.  Laugh and take great joy in everything they did.  And then load them upstairs, get out the masks and gloves and start again...

That is how the first 24 hours of them being home went and it is how every day was for a while.  A couple of weeks after they came home my in laws arrived and helped with staying up at night and listening for the machines.  My parents would come over and help play with and entertain the babies.  But, Al and I had decided we would be the only ones to do the actual medical care so it continued to follow the same basic schedule.  My teaching job would many days feel like my easy relaxing job and this new home routine felt like the most wonderful, rewarding, important and incredibly difficult job I had ever done.

By the time that first week of school was done, I had never known tired like I felt then! I remember missing the NICU.  I loved having my babies close and I loved being the one to take care of them but the reality had really sunk in that we did not bring healthy babies home- we brought home sick babies needing a hospital level of care.  It was an awesome privilege that we could do that at home.  And it was incredibly difficult.  And I did miss my beloved nurse friends who took care of all the medical details and listened to me ramble about my day while I just held my babies all afternoon.   I missed having like 5 doctors check on them every afternoon and knowing it was never really up to me to determine if they were doing okay or not.  I missed my village that I had come to value so deeply.  It was a big adjustment.

And then Saturday morning came.  And I woke up in my bed instead of the inflatable hospital mattress at the Ronald McDonald house.  And I went upstairs and laid down on the floor with my sweet hooked up babies and cuddled with them for a couple of hours.  In my pajamas, in my own house.  And it felt amazing.  When dialysis was done and they had 6 or so hours of freedom, we got them all dressed up and loaded them into their precious personalized car seats and took them for their first ever trip to their grandparents house.  I took hundreds of pictures of the beautiful moments of them being there.  Eight months old and they were getting to go outside for the first time, getting to see new things for the first time, getting to go to their grandparents house and play with all the toys accumulating there for them.  Eight months of life and my babies were finally living.  And that day I didn't miss the NICU.  I didn't care that I was tired and worn out.  I didn't care that we would have to go home and head up to our gameroom hospital and pretend to be nurses.  All I cared about was that my children were enjoying life and I was getting to watch them experience it and I felt so blessed.

The next couple of months adjusting to having the babies home would follow this same trend.  It was incredibly hard work and I would feel insanely exhausted.  I would miss my NICU friends and the reassurances of living in the hospital.  But I would savor each new experience and soak up the joy and know each night when I went to bed that Max and Addie were exactly where they were meant to be.

When I think back on those months now, I admit I wonder myself how we managed to do it.  We would daily have someone express something along the lines of 'how do you do it' to which we would answer with anything from a shrug to a full blown explanation of how blessed we are to take care of these children.  But the truth of the matter is that we did it back then because they are our babies.  And that's what you do for your babies.  Whatever it takes.  Like the old story of the mother who found she could bench press a car to save her small child, we surprise ourselves with what we can do for our children.  With what we consider it a joy to do.  And in that respect, our early days with our babies home were no different than any new parents' experience.  New parents do not suddenly dislike sleep and become fascinated with poop.  Rather they wake up all the time and go through piles of diapers because they love the new baby in their home.  Parenting is exhausting and it's challenging and it is selfless.   And it a joy and it is most rewarding sacrifice you can make.  And that is exactly what those days were like for me.  Rushing home from work to sweat under my mask and try and help run our gameroom hospital- it was parenthood in the extreme: joyful draining sacrificial love.

Monday, August 4, 2014

Chapter 21: The Curse of Vanity (Max's Homecoming)

After eight months of living up at the hospital, you would assume I had long abandoned my attachment to 'how I imagined things' and obsessions with picture perfect moments.  And yet, somehow I remained irritatingly sentimental about certain things and stubbornly determined to achieve and celebrate the moments I had long dreamed of.  I am sure it was, at times, a great strength but there were moments when my need to preserve a semblance of a fantasy actually proved detrimental.  It ended up being a long journey to reach the point of seeing the beauty in things exactly as they are instead of trying to mold them into what I had previously believed would be beautiful.  It is a lesson I  learned through time and through some mistakes.  One of which happened on the day that Max finally came home from the NICU.

Nearly as soon as we found out we were having a boy and a girl, we had coming home outfits selected.  Sweet tiny matching pink and blue soft onesies with tiny hats and precious stitching.  Their car seats were covered in pink and blue minky dot covers with their names embroidered on them in matching green thread. I had imagined the photos of us standing at our front door, each cradling a tiny love smiling and confident in this new adventure.  By the time we were getting our dialysis training and rehearsing CPR on cabbage patch dolls, it was pretty clear the picture was going to look very different to that.  We realized Max would be beating Addie home by a few days and of course, he would be a big nearly 20 lb eight month old and not the itty bitty boy who had long outgrown his blue onesie with the matching hat.   But, while it wasn't going to be exactly what I had envisioned, I had decided it would just be all the more special and monumental and amazing because it had been so long anticipated.  The photos may look different but I was sure they would be just as significant and beautiful.  So, as the day was arriving I was picturing all the photo ops of Max in the car for the first time, Max by the front door, Max on our couch, Max in his crib that had been patiently waiting for him for close to a year.  Max finally home all smiley and healthy.

There was one discrepancy between these images and our current reality- that pesky feeding tube.  Having only surrendered to the feeding tube three weeks ago, I still hated it.  It still looked like a symbol of sickness, a contradiction to healthiness plastered there on his face.   I felt it took away from the beautiful images of a long-awaited homecoming.  I was wrong to think that, I see that now.  But at the time, it felt all too essential to me that the feeding tube not be down his nose for his homecoming.  And the tubes did not have to be in 24 hours a day.  They would fall out, they would periodically need replacing.  The babies could go hours without them as long as they did not need any meds or a lot of food.  So I convinced Al that we should take the tube out, give his face a break, bring him home and take all my pictures to capture the moment of his healthy return and then replace it and stick it back down an hour or so later.  Al and I had both placed the tubes before so it could be done.  Al didn't see the same urgency to banish the tube from photos that I did but he agreed because he knew this homecoming moment was so important to me.

So we loaded up all of Max's belongings that had been living up at the hospital with him. He was dressed in a soft white sailor themed shorts outfit.  Al and I were dressed up in our favorite clothes for the occasion. We embraced our favorite nurse as she tearfully kissed Max goodbye.  I clicked away as we placed him in his blue minky dot carseat.  We loaded the truck with all his medical equipment, dialysis machine, oxygen tank and carefully closed it all up, hiding away the evidence that this was still not your typical homecoming.  We drove home smiling and confident.  We had done it, we had graduated the NICU and now we would have Max home all to ourselves to care for and enjoy and it would all be so fabulous.  We arrived home. Click. Stood by the door. Click.  Placed Max on the couch.  Click.  Sat on the couch with Max.  Click.  Placed Max in his bed.  Click.  Introduced Max to the dog. Click.  Over a hundred clicks later and we decided it was probably time to put a feeding tube back down and give Max some nourishment.  Equally experienced at the task, it was decided that I would have the dreadful job of sticking the thin plastic straw down his nose as I was the one who had pleaded the case of removing it.

So just like I had done before, I pushed the tube down Max's nose.  It scared and infuriated him.  Maybe because he was somewhere new?  Maybe because he felt queasy from the car trip?  Maybe I was just really bad at it? Maybe it just really annoyed him this time... but he got furious and goes to scream and completely shuts his airway around the tube. A Max Attack has begun. I'm unable to push it further so instead pull it out. Max is still not breathing.  Max is no longer red and angry but purple and terrifying.  I am freaking out because this time it isn't happening in a safe hospital but in our living room.  Al starts panicking trying to figure out where we had left his oxygen tank and ambu bag.  He is running to the trunk to retrieve it from its pile of urgent medical equipment that had remained hidden in the trunk admist all the clicking.  Al comes running in with the ambu bag and by now Max has lost his color and is pale and still.  It was probably barely more than a minute but felt like an eternity.  I start bagging Max.  Nothing.  No gasp of breath, no return of color.  Just sweat pouring off of me while Max remains white and still.  I am not crying but shrill and stressed as I throw the bag over the Al.  He starts pumping while I tell my mom who was there with us that we were going to have to call 911.  I just keep thinking, this cannot be happening.  We cannot be losing Max the day we bring him home.  This cannot be happening.  This is my fault.  He was safer in the hospital.  This cannot be happening.  He has to be okay.  This cannot be happening.  During my panic and during Al's persistent pumping on the ambu bag, my mom has retrieved the phone and is ready to dial 911 when we finally hear the gasp.  Max sucking in air having his throat finally opened up.  A huge sigh of relief from the three of us adults as we see the pink coloring return to his face as he breathes in the oxygen pouring from the tank into his lungs.  Within a couple of minutes, Max is rosy, peaceful and fairly worn out from the experience.

We all look at each other.  There is no need for anyone to say 'I told you so' as it was very clear that the 'healthy' photos I had successfully captured had come at too high of a cost.  There was no desire to talk about how scared we were, the thoughts we had entertained.  We all knew we had been thinking the same things.  After a few minutes of quietly decompressing, Al finally asks my mom to pray for us that God would enable us to take care of Max.  And so we do.  My mom prays out loud as we stand over Max and let the reality soak in.  This day while exciting and momentous and beautiful was not merely the end of a NICU journey but more significantly the beginning of a new stage where Al and I were solely responsible for this precious boy.  Where we were entrusted to keep him alive, when we all knew that would be no easy feat. It was a celebration to have that privilege but it was more importantly a huge responsibility.  As we stood there praying, we realized how much we needed prayer and support as we started this stage.  It was a very necessary sobering experience to focus not on capturing a pretty picture but on living up to a new calling.  We said Amen and we promised ourselves and each other that ensuring Max's safety would be our first priority from that moment forward and that we would not forget to keep praying for God to enable us to take care of him.

While I did feel guilty that is was my choice to remove the feeding tube that led to the close call, I did not beat myself up over it.  It had been an innocent mistake.  I had never imagined how stressful putting it back in would have been.  I would never have done it if so.  And although we would have to remove the tube for replacement every week or two and I would still take advantage of those moments to capture family photos, I had certainly learned from the experience that a tube on his face was a far prettier sight than the haunting image of what had happened that day.  I won't go so far as to say I completely learned 'my lesson' that day because letting go of what I thought things should look like was a longer process, but I did grow and change as a mom that day.  I let go a little more of my vision of what was meant to be, I realized a little more that 'looking healthy' is far less important than it seemed and I learned a lot about remembering my priorities in big moments.  From my mistake, my lapse in judgement, my focus on appearances rather than realities, we grew closer to the parents we would need to be.  And that is the essence of real stories, of real moms.  Our defining moments, our greater triumphs, and our most valuable stories sometimes come from some of our more regrettable mistakes.

Friday, July 25, 2014

Chapter 20: Leaving my Village

At the end of August, once Addie's heart was behaving and I had waved my white flag of surrender to the feeding tubes, I looked up and suddenly, finally could see it.  The light.  At the end of the winding, twisting, very long metaphorical tunnel we had been wading our way through.  For so long, we could not even see a glimmer through the turns ahead.  But, finally, the end of the pathway was illuminated and while we could see a few hurdles ahead, it was an amazing relief to realize an end, to this stage at least, was finally visible.

Our eagerness to bid farewell to the NICU had nothing to do with not enjoying our time there.  In fact, by the point where the light was perceivable, our NICU days were in fact downright enjoyable.  The babies were comparatively healthy, they were smiling and social and enjoying the crowds of doctors and nurses who came by frequently to visit with the famous giant NICU babies.  Each baby had their own nurse because of the dialysis and we knew all the nurses and had selected a handful of 'primary nurses' for both days and nights.  These girls were more than amazing nurses, they were my friends now.  I was on summer break so I had no need to leave the hospital so I spent every night in a Ronald McDonald room in the hospital that they had given up making me move in and out of.  I had my own space and my own friends and constant support and help.  I thought about regions around the world where whole villages raised their babies together, the children surrounded by adults who knew and loved them.  I had embraced our NICU as my own village, Max and Addie were surrounded by care takers who loved them and the days of caring for them were passed with laughter and a feeling of community.  In many ways, the idea of leaving my village to then care for all their needs on our own at home was frightening.  However, I also knew it was time.  By late July, I had only a couple of weeks left to enjoy my days of cheerful village time before I would have to go back to work and I had decided early on I could not face another year of working with them over an hour away in the hospital and the long afternoon and evening commutes to see them.  I needed by babies home when I went back to work.  I had decided months ago that I would make that my mission.  Plus, for all the companionship of my village, it was also a village where other babies became very sick and even died, a village where my sweet babies had to get daily lab draws and where they were not free to go outside and experience all the normal simple things like parks and car rides and the feel of raindrops that 6 month olds are meant to be experiencing.  I loved my village in many ways and yet I also knew it was time to leave and explore the big world out there.  So despite how comfortable and even enjoyable my days were, I did truly rejoice and feel palpable excitement at seeing the light get stronger by the day in late July.

It is sometimes baffling to me when I hear about a 'normal' or typical baby being born and then going home like 48 hours later.  Who trained those parents?  When are they going to get weeks of detailed instruction? Did they pass their 'care by parent' trial parenting test? One could even argue there might be an overall benefit if every parent did have to go through the training and proving that we did.  But for healthy kids, they send them home and trust the parents will figure it out between instinct and trial and error.  When instead you have two kids who are going home requiring 18 hours of dialysis therapy, more than a dozen medications each and one of whom has an unfortunate tendency to hold his breath and require help to stay alive... well, it makes sense that they were not about to just send us home to figure it out on our own!

While they were in the hospital they had nurses who would initially manually fill them with dialysis water and manually turn the clamps at set intervals.  But, in order to come home, they needed to be successfully using an autocycler machine that would perform this role.  We had been hearing about this magical autocycler for so long that in my mind it was going to be gold plated and covered in rhinestones and take our breath away with its glorious powers and presence!  Instead it looked like a large 1980s printer- completely mundane in appearance but very important in function.  Al and I would have to set up the cycler each day, choosing the correct type of dialysis fluid and programming the correct settings and entering their weights and blood pressures.  We would need to wear masks and gloves and connect the babies to their machine.  We would literally 'plug' them in.  They had a 6 foot leash and could move around within those 6 feet but no more.Then, in theory, the machine would fill and drain water every hour for the next 18 hours without us doing anything. If everything went smoothly, the machine would proudly announce its completion the next day and we would disconnect and woohoo, blood is clean, excess water is gone and the babies can live life to the fullest for 6 hours until it all started once again.  If things did not go as smoothly, the machine would instead angrily alarm and yell at us and we would have to figure out what was wrong and try and fix it.  It was clear early on that when it worked well, this machine was truly wonderful and that when it did not work well, this same machine could be maddening.

Before they would send us home with the temperamental machine, they wanted it to be successfully working in the hospital and have us go through a week long training.  As all that was coming together, our nurses were busy training us on their medications, we were taking CPR courses and being encouraged to take over bagging Max during one of his now less frequent breath holding spells.   Max started on his autocycler a couple of weeks before Addie because her heart failure drama had slowed her down.  So by late July Max had completed two successful weeks on his machine and Addie was starting on hers.  We were giving most of their meds and feeling confident with the details of their care.  We were ready for our training and to start packing!  Interestingly, we had to actually be out of the NICU and have the babies in a standard pediatric room where we would sleep in the room with them during the training week.  Already having established himself as a dialysis super star, Max got the honor of leaving the NICU and moving up into big kid world! We actually requested Addie get to stay in the NICU until she went home since we knew and loved all her nurses and they would be there at her bedside.  If we moved them both, they would be in separate rooms and we would need to both stay every night and constantly be leaving one of them alone during training.  So Addie got to stay and soak up another couple of weeks in her village while we focused on getting trained with Max.

We were blessed with a great dialysis nurse.  Julie would spend the week training us and did so with a patience and a sense of humor that ensured that we both learned a lot and managed to have some fun during that week.  Me, Al and my mom were crammed into a small room with Julie discussing all aspects of running dialysis while my mom's best friend Becky spent the week with Max in his new room entertaining him and keeping him company.  When training ended in the afternoon, Al or I would take over in Max's room providing all of his care and practicising all our new skills.  We would all take turns to go back down to the NICU and spend time with little miss who was happy and seemingly oblivious to her brother's departure.  It was a busy crazy week with all hands on board, all of us very busy, but very excited.

Which is not to say there were not moments where all this change was not stressful.  Having long been in a NICU surrounded by nurses who knew and understood him, Max's color changing spells had lost most of their scare factor.  In this new environment though, he made it only a day before a nurse called a code during his spell and the entire room was flooded with doctors and panic.  We were in charge of learning how to drop feeding tubes down Max's nose ourselves and I cried having to stick the tube down his nose, and failed to do so many times, escalating my own anxiety and his discontentment, before I succeeded.  Additionally an interesting conversation came up during this week of otherwise exciting advancements... for the first time ever, someone mentioned the words Cerebral Palsy in relation to Max.

When you live in a room with 2 pound babies, it's easy to lose focus on developmental milestones.  When you are worrying day in and day out about your babies survival, it's easy to lose focus on developmental milestones.  When you are watching labs and fluid levels and making important daily decisions and changes, it's easy to lose focus on developmental milestones.  And when your child has been so sick and living in such an atypical environment for months, it is hard to even know what developmental milestones you should be focusing on should you remember to think about it.  So, while it may seem strange that we were relatively unconcerned that Max was not holding his head up or rolling at nearly 8 months old, it did not seem that anyone around us was overly concerned either.  So we just never really worried about it.  There had been some warning signs.  His respiratory issues and tight muscle tone had initially alerted our attention and even earned him a visit from the neurology team.  They had an MRI completed when he was about 6 weeks old and ruled the results to be unimpressive- no obvious issues and so neurology 'released' him and we never heard anything about a neurological problem again.  Then around 3 months Addie was confidently holding her head up and working on rolling and Max was not.  By 6 months, Addie was rolling around her bed and sitting in a 'tripod' position and Max was still not holding his head up.  His delay was noticeable when he was constantly next to his sister but given how many issues he had in those first few months, we were aware but unconcerned. I think we all just kept hoping and believing he would catch up and no one wanted to even entertain the idea that something else could be wrong for these sweet babies that had already been through so much.

One day training week Max's physical therapist came to visit him.  She had been seeing him for months now and he enjoyed working with her and she was always great about being accommodating and working around when he was awake and feeling well.  This day she was working with him as always and I was watching and for some reason I casually asked if she thought he would catch up once he was home.  I was really asking the question in hopes of getting reassurance, rather than actually seeking a fleshed out answer.  Nicole paused and made a non-committal response.  She continued on and said someone like Max is harder to predict because of his neurological issues.  I stopped her and pointed out that Max did not have any known neurological issues.  She was really surprised by this.  Somehow in her months working with him, she had inferred he must have some neurological issues, even though in reality neurology was not following him. She suggested we may want to actually get neurology to see him and look into his atypical muscle tone.  He had low muscle tone in his core but tight muscle tone in his limbs.  She threw the term 'cerebral palsy' out as one possible diagnosis that would present with this tone pattern.  She emphasized that she was not making a diagnosis and also reassured me that some children who have cerebral palsy have no lasting effects aside from maybe messy handwriting.  I appreciated her input and agreed it probably needed to be looked into but that I was sure everything would be fine.

And then that night I googled Cerebral Palsy.  And I read blogs.  Some hopeful blogs, one devastating blog about a family who lost their child.  I read wikipedia descriptions.  I read for hours.  I saw symptoms that reminded me of Max.  I looked for symptoms that would disprove that Max could fall into this category.  I searched for the happiest stories I could find.  And then I made a decision to stop reading and stop thinking about it and go back to our happy week of homecoming excitement.  Al and I talked and agreed we did not want to involve neurology at this point and delay Max coming home.  That would have to come later if he still was delayed.  But surely he would not be.  Surely he would catch up at home and we this issue would all just go away.  We chose consciously to ignore the signs.  I think at that point it was all we knew how to do.  Everything we had been through was so overwhelming and we were trying to learn how to administer dialysis at home and we were so close to this new hope.  The only thing that seemed feasible then was to run as fast as we could towards the light in front of us and pray and believe the rest would fall into place.  And so we did.  We did not talk again that week about Max's development.  It would be months before we would say the words cerebral palsy again. The seed stayed planted in my mind, slowly preparing me for what was to come.  Slowly making room in my heart and mind and slowly waiting for the day when that would be our focus.  I am grateful the seed was growing and preparing me but I am also grateful that we did choose to embrace the joy that week and that we gave all our energy and enthusiasm to getting our family home.

We finished dialysis training Friday afternoon and we brought Max home the following Wednesday.  By that week, I was up at school getting ready for the next year and in staff development as the school year was about to start.  Four days after Max came home, we brought Addie home on a Sunday afternoon.  And Monday morning I woke up and taught my first day of the school year.  We just barely made it but my babies were in my house by the start of the new school year, just as I had planned and hoped and dreamed they would be.  There would be days I would miss our village terribly and we figured out very early on what a huge responsibility keeping these babies safe would be but it was an important step for next phase for our family and we were thrilled that we were finally reaching that stage.

Of course, no milestone would come without its own drama so the day of Max's homecoming is its own tale, it's own scare and it's own miracle... and therefore it's own story.

Saturday, July 19, 2014

Chapter 19: Losing their Appetites

Sometimes I meet people for whom food is just not a big deal.  They eat to feel full, they give little thought to planning meals and they approach shopping lists with a pragmatism and frugality that is admirable, if not completely confusing to me.  We are not those people.  We are food people.  Not fat people as we force restraint and refuse to completely indulge our food fantasies.  But we love food.  We are the family that starts talking about the next meal soon after finishing the last one.  A good vacation is one with delicious novelty food.  Holiday traditions all include beloved recipes.  And so when we imagined having a family, we imagined all the food traditions we would establish with our kids.  They would bake cookies with Nana, go for Saturday morning doughnut trips with Dad, and develop a taste for Australian vegemite and American peanut butter.  It has therefore been a big adjustment instead having children that do not eat.  When we tell people that the kids do not eat they look at me confused.  Like surely you don't mean they never eat.  You must been they are picky and only eat chicken nuggets and Mac and Cheese.  Oh if only! Nope, they don't eat anything.  But once upon a time they did.  Dialysis, though, would change that.

As small nearly four pound preemies, Max and Addie could not yet eat, as was to be expected, so they had small NG tubes that went through their nose and into their stomachs to deliver food.  The feeding tubes were so expected that they did not really bother me but I was very determined to get rid of them.  Addie was healthiest so my energy was quickly poured into trying to get her to eat.  I breastfed her for a couple of weeks until the number of supplements we needed to add to their feeds and their other medical issues made bottle feeding more sensible.  So I continued to pump milk for them for months, pour tons of medications into it and devote time to trying to get them to drink the milk.  And it was never easy.  They were always reluctant feeders, but with perseverance Addie was drinking all her bottles, which included all of her medications, by early February, well before her due date, and we able to pull out her feeding tube for good.  I rejoiced in being able to take pictures of her face, without the tape and tubes that seemed to take up her whole face previously.   

Max was an even greater challenge because he seemed to have a weak swallow.  We started working on feeding with him later due to his lung bleed slowing everything down initially.  Then when we started, it seemed to go badly with him acting distressed and disgusted by the milk.  More concerning, the doctors were afraid he was choking on the milk and it could be getting into his lungs.  After a swallow study, it was decided he could only drink milk if we had thickened it.  So in addition to adding all of his meds to his milk, we now poured powder into it.  It looked like thick sludge and smelled like iron and antibiotic.  I was, and remain, completely shocked he actually drank it.  But slowly but surely he mastered drinking his sludge and his tube too was pulled.  Two babies with tube less faces!!! So many pictures!!! They looked healthy to me without the tubes and at that point, it seemed so important to me that my sick kids still appeared healthy.  This was not to say they had become amazing eaters.  On the contrary, each meal seemed to be a challenge and the nurses, therapists and all of us worked very hard to get those bottles emptied.  I spent hours thinking about how they were eating, worrying about if they were gaining weight and buying different bottles with varied nipples.  And because it was a challenge, I found myself filled with pride that they did eat and counted each ounce they gained as a personal accomplishment. 

As soon as we started talking about dialysis though, the warnings started.  Kids on dialysis do not tend to eat well.  They usually need feeding tubes.  Their bellies are so full of the sugar water that they feel full all the time.  The electrolyte swings remove their appetite and taste for food.  They tend to lose any desire to eat.  There was even a discussion about whether we wanted to go ahead and put a g tube, a permanent feeding tube surgically placed into the stomach, in before they started dialysis. Although these discussions were perfectly reasonable and I recognized that they were trying to prepare me, I was nonetheless convinced that this would not happen to Max and Addie.  They were going to eat even on dialysis.  They had been eating on their own for months now and I knew how to get them to eat even when it was hard.  So I told the doctors I wasn't worried because MY kids would eat.  The whole dialysis causing them to lose their appetite and not eat was never going to happen to them because I was the master baby feeder.  It was a combination of pride (which does, of course, always come before the fall) and stubbornness and innocent optimism.   

Once I had declared that my babies would continue to eat and that we would not be returning to feeding tubes, I then had made it my personal mission to ensure that ended up being the case.  Those initial days on dialysis, I was there every feed, using all my best tricks to get the bottles down.  The bottles had unfortunately become even more disgusting as we now had to add a lot of sodium into their food due to the dialysis.  The milk now stank of salty iron and medicine and I actually felt guilty feeding it to them.  But I continued to because we would not need feeding tubes.  Other than when Addie was so sick, we did manage to get them to drink their bottles initially and I was so excited, I pretty much wore a permanent smug supermom smile.  However, with each day the challenge became harder.  By three weeks after their surgery it was taking so long to get their bottles done that it would nearly be time for the next one by the time they finished.  I was essentially feeding one of them around the clock.  It was emotionally exhausting because I felt so anxious about each bottle being finished and I was trying to still seem calm and relaxed to them.  Feeding had become a huge ordeal but they were still eating so while my smug smile had vanished, I was still convinced it was doable and that I could avoid the feeding tubes.

Another week later and they were not drinking their milk well at all.  The occupational therapist was doing everything she could to help them, even facing them in the corner so they could not be distracted while rocking them and using every fancy trick they could think of.  It was not working.  Bottles were going unfinished.  An hour would be spent for them to get a couple of sips down.  Everyone was frustrated and the daily weight checks were getting more concerning as they failed to gain weight.  I knew I was losing this battle so eventually a full month after they started dialysis, I had no choice but to let the feeding tubes come back.  Tiny cheeks covered in tape to hold a tube down.  Little button noses with a tube wedged into it.  Sick babies actually looking sick.  It made me very sad.  I hated the feeding tubes.  But I also knew they had to get enough food and get all their medicines in order to get well enough to come home.  So I accepted my defeat but not happily.  It had been a mistake to insist that I could make them eat because it set me up to see their not eating as a personal failure.  It made something that should not have been particularly emotional in comparison to all we had been through, seem like a defeating blow. 

I did not give up even after the feeding tubes came back.  We continued for months to offer bottles, try baby foods and experiment with new ideas.  None of which proved successful.  But we continued to try.  And I continued to hate the nose feeding tubes with a passion.  In fact, I would not really feel acceptance of their tube feeding until we finally did get g tubes in their stomachs and the reminder on their face went away.  By that point, I had accepted it, even if I still could not totally understand it.

At three and a half, Max and Addie both still rely on their feeding tubes for their nutrition.  And I am still coming up with new experimental ideas and they are still not very successful.  I will offer Addie her own bag of donut holes and she will take it like a treasure and excitedly take out each little hole.  She will play with them, squish them, maybe feed one to Elmo, and then return them to their small white bag uneaten.  And I always look at her completely stumped and intrigued.  We are a family of food lovers.  How do my kids not love food?  How can they make a disgusted face at ice cream?  It is hard to truly understand.  But, I do accept that it is neither my fault nor theirs.  It is just a side effect of dialysis and everything they have had to go through.  It isn't a defeat, it's just a cost of a victory.  Dialysis saved their lives, it just killed their appetites in the meantime.  And when I look at it that way, the fact that they get their food through a tube rather than in their mouth really does not seem like a big deal at all.   Plus, it just means there is more food left for the rest of us food lovers...

Saturday, July 5, 2014

Chapter 18: The Tale of Two Hearts- Part 2

This may surprise you but I believe that going through incredible stress and medical crises actually turns you into an eternal optimist.  You may assume the opposite- that by this time I was expecting the next bad thing but instead, I seemed to will myself to always assume that the most positive outcome possible would in fact happen for us.  This was in no way based on experience but rather an irrational but necessary survival mechanism.  When you hear from doctors all the bad things that can happen, you just cannot cope as a pessimist.  You will never sleep again.  The only way to get up each morning is to cling to that ever patient optimistic side of yourself and assume that today is the day that things will drastically and permanently improve.

Therefore while I arguably never should have assumed that Addie's heart had fully recovered two days after her emergency surgery, I needed to believe that the worst was over and I am grateful for my two days of smiles and relief.  The nurses were relaxed and rejoicing with us and we dressed the babies up and took pictures of them, Addie all pink from a recent blood transfusion and Max all smug from his week of being the better behaved child.  My aunts from Oregon had come to visit and I was so relieved that things were better and cheerfully took an evening off from the hospital for the first time in a week to have dinner with them.  And I am glad I had that day of happiness with them because everything was going to change when I went in the next day.

Sunday morning and I head in early excited for another day of recovery and Addie smiles.  Immediately, though when I get there, I know something is wrong.  Addie is not fussing at this point and her coloring is still pink but the grunting is back.  Earlier in the morning, she is grunting after some but not all breaths.  As the hours pass though, every breath has a grunt with exhale.  Her spirits are going back down and she is crying and unhappy.  My favorite nurse is not working that day and we have an animated and great nurse but one who is far less familiar with Addie.  So I am starting to sound like a paranoid mom saying over and over 'it's a bad sign she is grunting', 'I really just don't think she is okay', 'I feel like something is wrong with her heart', 'Please please can we just get a chest X ray or echo'.   The nurse was not being dismissive but she was also clearly not sharing my urgency.  So after getting tired of my pleas for a chest X ray, she put orders in for one but with it being a Sunday it took a bit of time.  The X ray finally happened but by then Addie has escalated to wailing so as soon as they get the images, I grab her from her bed and am holding her, bouncing her in my arms, trying to soothe her.

I would never claim to have any sort of photographic memory and I have a terrible spatial awareness and am not generally great with visual recollection... BUT the handful of truly memorable moments with the babies I can remember like a photograph.  I know exactly what they were wearing.  I know where I was standing and who was in the room.   So I know that when I was holding Addie, she was dressed like a perfect doll in this striped tunic style dress with coral leggings and a white sweater over it, and, of course, a bow.  It was one of her first times to wear that outfit and she was precious in it, even as she was crying and squirming in discomfort.  I'm standing at this point trying to find some comfortable position for her and holding her back against my chest and kind of bouncing or dancing.  I do not have a direct view of her face so it was actually the animated nurse who first noticed that Addie's mouth all around her lips had turned blue. Which thanks to Maximillan the Chameleon I knew instantly meant her oxygen levels were low and that she was in trouble. This shocked me though because, despite how I had been saying she wasn't well, I wasn't expecting her oxygen to drop like that.  The whole miserable week before when her heart was in so much trouble, she never turned blueish and she kept her oxygen up.  So it was terrifying to think that she was now somehow worse than that.

The nurse swept her out of my arms and checked her oxygen level and sure enough, it was in the 70s and dropping (it should be 95-100).  She pages a senior doctor with an emergency.  No doubt we were a matter of minutes from her calling a code but my favorite neonatalogist (preemie doctor) was just down the hall and came running in.   I'm standing there awkwardly not knowing what to do and feeling completely panicked and I have never been so happy to anyone as I was when Dr Jones walked in.  I thought he was the most calming and competent of all the senior doctors I had met so I knew she was in the best hands.  He rushed over and immediately began bagging her.  The oxygen mask was over her face and he was pushing oxygen in as fast as he could, pumping the bag over and over.

Thanks to our regular Max attacks, including many a day the past couple of weeks, I was completely familiar with seeing my child being bagged so it should not have been a particularly scary moment for me.  But I had never seen Addie bagged before and also, Max responded quickly, like within a couple of minutes, to being bagged.  Meanwhile 5 minutes has passed and Dr Jones cannot get Addie's oxygen to stay up.  He is keeping it from slipping further but he isn't stimulating her breaths to be strong enough to hold it.  He calls out to the room full of nurses and other doctors now that he is going to have to emergency intubate her and stick a breathing tube down to connect her to a ventilator.  I'm standing by myself off near Max's crib watching the whole thing and feeling more terrified.

Someone brings Dr Jones the supplies he needs and he stops bagging her to try and intubate her.  While he is doing this, her oxygen is dropping lower and lower.  I am staring at the monitor as they are dropping into the 40s.  I understand now that it is very normal for oxygen to drop like that when someone is being intubated and that it is not an ominous sign.  But this was my first time to watch someone be intubated and the room was so tense and stressful that no one could be explaining it to me.  So I stood there and I was genuinely afraid that she was dying.  All I could see was that her oxygen was getting worse, her heart rate had started to drop and although the doctor had now been there for about 15 minutes, things were not getting better. In hindsight, I probably should have run out of the room and waited in the hallway so I wouldn't be haunted with images of Addie in her doll outfit looking like that but I also was not going to leave her at a time like this so I just stood there not moving paralyzed with fear.  Thankfully those anguishing moments were short and within a couple of minutes, Dr Jones had her intubated, hooked up to the ventilator and her vital immediately improved.  I breathed a sigh of relief so loud that suddenly everyone in the room suddenly remembered that I had been standing there watching this whole scene and the doctors and nurses all emphasized to me that she was okay now.  Except for, of course, the fact that we had no idea what was happening to make her so sick again.

Dr Jones then pulls up the chest X ray that thankfully had been taken just before all this happened and saw that while her heart was not as big as it had been, her lungs were very hazy from having fluid in them.  Which was compromising her breathing ability.  He explained to me that this can happen with heart failure that the heart ends up pumping fluid into the lungs.  He also reassured me that although we obviously had to work out what was going on with her and how to help her, she was now stable as the ventilator would breathe for her and keep her safe until we did know better how to help her.  He was super comforting and the pedestal I already had him on was now even higher!

My mom and dad and aunts had been on their way up to have lunch with me at the hospital when all this began happening but I went and talked to my mom and said that while i was happy for her to stay for a while, I really couldn't handle a whole group.  My dad drove my aunts home and my mom stayed with me while Al was on his way up.  He had stayed home that morning and started driving down after Addie was stable and intubated.  Everything had happened so fast I had not even had a chance to let him know what was happening from the time her lips turned blue until the doctor had the breathing tube down.  By the time Al got there, there was really very little for us to do.  The ventilator had indeed stabilized her and actually understanding what had happened or what we should do would have to wait until round Monday morning when everyone was there... so until then, we held Max and we prayed for Addie and tried to keep our own emotions from spiraling down.

The next couple of days would bring more questions than answers.  No one was really sure what was going on with Addie.  The kidney doctors thought her heart was the biggest problem.  The heart doctors thought dialysis was the biggest problem.  The preemie doctor who had walked us down for Addie's surgery was back and he did a great job of getting together with both specialists and trying to bring them to an agreed upon plan.   We would continue to pull fluid off aggressively and leave her very 'dry' or dehydrated and we would continue to administer IV heart meds around the clock and wait and see.  The worst part was that the whole situation was casting this dark cloud over the future.  Conversations worked themselves into this terrible circle-  Addie's heart is not tolerating the fluid shifts of dialysis.  It would be better if she got a kidney.  You cannot do a kidney transplant on someone whose heart is not stable and able to handle stress.  So, we may not be able to get a kidney in her.  And without a kidney, her heart is going to have major issues.  Of all the predicaments we had ever been in, I found this one the most depressing.  I had come to see a kidney transplant as my goal for the babies and as our eventual freedom and happily ever after, so to listen to the doctors both reinforce how much she needed a kidney and also question whether it would ever be possible was just torture for me.

Addie ended up staying on the ventilator for four days.  It was a miserable time for her.  As she felt better, she was aware of the tube down her throat and most unhappy about it.  We swaddled her tightly in a blanket to keep her from pulling it out and she was so dehydrated she was constantly thirsty so we would put wet washcloths to her lips.   It was absolutely heartbreaking.   And it was one of many times when I saw what a gift it was that God had given us twins.  For while we felt helpless with Addie on the vent, we were blessed with a super cheerful little boy to hold and love on and find comfort in.  Max was actually doing really well on dialysis and he was feeling great.  It was such a needed joy to have him there to lighten our spirits as we dealt with watching Addie struggle.

I cannot tell you the exact moment when Addie's miracle happened.  I am not even sure if there was a single moment or if was a more gradual process.  But at some point in that week, God healed Addie's heart.  After four very long days of watching Addie restrained and on the ventilator, it was time to pull out the breathing tube and see how she did on her own.  She has thoroughly dehydrated and her vitals on the ventilator looked good so there was no way to know how she would do without it until we took the plunge and pulled it and gave her a chance.  Initial nerves were settled when that night she did really well and the haunting grunting was completely gone.  The eternal optimist in me was rejoicing as each hour passed and Addie still seemed well while the recently traumatized worrier in me kept wondering when it would all happen again.  At that point, I think everyone thought that this history was going to repeat itself at some point.  Since we had come to no real answer other than her heart is highly sensitive to the fluid shifts of dialysis, it seemed probable that dialysis was going to be very rough for her and that these scares are likely to occur again at some point.

But they did not.  Ever.  The days passed and we constantly did chest X rays and Echocardiograms to study her heart and everything looked good.  It was not what we had expected medically.  We expected her heart to improve, yes, but continue to show signs of sensitivity and stress.  It was beyond what anyone had hoped.  We would repeat in a couple of days and everything would look good. We would follow up in a month and everything would look good.  Six months and everything would look good.  Each time we got news that Addie's heart still looked good I would become overwhelmed with excitement and gratitude.  Before long, I had truly realized that she had been healed and that her heart was going to stay looking good.  Then, instead of being nervous for these heart checks, I would anticipate the joy of witnessing once more Addie's miracle.  And each time the tests confirmed that Addie's heart was still doing great, I would remember the moment when I stood by her bed crying and told God I would be okay with her hearing loss if he would just save her life and heal her heart.  And He did.  Completely.  And in doing so, He healed mine.

It was a terrible couple of weeks but it completely changed the way I saw so many things.  To this day, I marvel at what a miracle and blessing sweet Addie is.  She doesn't resemble that very sick 6 month old in hardly any ways but I remember how things were for her and savor her health and her perfect little heart so much more richly.   And while I cannot say I have never shed a tear over hearing or developmental issues, I have never grieved and mourned for it like I once did again.  Because I saw firsthand what mattered most and I know that as long as Addie is healthy, I do not need anything more.  I have never since thought of Addie as a child with hearing loss or a child with delays, I look at her and all I see is my miracle.  My healed little girl.  God gave her back to us in two parts- on that day when her heart was healed and then fully on the day of her transplant.  Two big miracles that have resulted in a perfect little girl.  Who cannot talk yet because she cannot hear well.  Whose mom thinks that is nothing.  Whose mom sees only the miracle.

Addie's healed heart was not the end of her troubles, but it was the start of her healing.  Dialysis would continue to be very difficult for her but with a strong heart now she was able to endure it.  And able to receive the important gift of life I was holding onto for her.  My healed heart was not the end of my struggles, but it was the start of my healing.  Difficult news and crushing predictions would follow but God had strengthened my heart to endure it.  Two weeks of tragedy gave way to a miracle that would teach me who was in control, what mattered most and that I could endure more than I knew possible.  For that reason, I will never see Addie's heart failure trial as a sad story.   I will always see it as a life changing story of healing.

Saturday, June 28, 2014

Chapter 17: The Tale of Two Hearts- Part 1

There are few stages in our NICU time that I would describe as being sad or depressing.  After the initial days, we had truly settled in there and my memories of those 8 months are of friendships, support, laughter and growth and healing for the babies.  There were exceptions, though, of course.  The week after the babies had their kidneys out and started dialysis was an overall stressful and sad time for me.  Surgery recovery was dragging along, with Max continuing to have multiple Max Attacks a day requiring bagging. He was objectively doing as well as we could have expected for so much change but our happy relaxed boy had yet to return and it did take a toll watching his daily color changes and discomfort.  While Addie had initially seemed to cope well with surgery, dialysis seemed to be leaving her puffy and tired and void of her usual smiles and playful spirit.  The days seemed to stretch on with neither baby being happy and with the hourly turning of clamps and draining of water that made dialysis seem, while not overly dramatic, incessant and constant.  They were requiring around 20 hours of dialysis at this point so it seemed very consuming. We knew this would be our reality until transplant so the ever present bags of sugar were doing little to brighten my mood.

The darkest cloud over me during this week though was still my grief over their reported deafness. The tears had long dried up and been replaced with a numb ache and a cloud of discontentment.  There was lots of talk among the doctors trying to understand why and the best explanation seemed to be that the aggressive IV medications they had been on for months had taken their toll on their hearing.  I suppose that explanation had its comforts in that at least it was not a new totally separate issue that affected them.  Furthermore, those medications had certainly saved their lives so there was no regrets or what ifs associated with it.  The medications had been necessary.  The hearing loss was merely a cost of saving their lives.  Now that concept brings lots of peace to me but in that week when the information was so new, it did little to make me feel less sad for my babies and myself.  Some nurses tried to talk to me about sign language or tell me cheerful stories about deaf friends but that only encouraged me to dwell on it more.  It was clear my heart was broken over it and it was tainting my usually positive demeanor, which no doubt everyone could see.

I remember it was about 8 days after their surgery when we had this Saturday that just felt defeating.  Max continued to turn blue and be unsettled and Addie's mild unhappiness had escalated to her being unusually fussy and sad the entire day.  I updated Facebook more sparingly back then than I do now, usually only with cheerful photos to try and reassure everyone we were okay, but that day I put a post up asking for prayer because we had just had a rough few days.  A friend of mine later said that she knew it must have been rough and I must have been struggling because such candor and honesty regarding the difficulties of our situation were rare then.

Unfortunately, things were not going to start getting better any time soon.  The next day was actually Al and I's anniversary and Addie was more miserable.  She seemed quite lethargic and her skin had a greyish color. She wasn't smiling and although she wasn't screaming, she would let out the occasional sad whimpers. Her vitals seemed stable enough at this point- she had no fever, she was maintaining her oxygen levels and her heart rate, though somehow elevated, didn't seem to be too troubling given we knew she was uncomfortable. And yet everyone who knew her and saw her knew something was very wrong.   Al and I had plans to go for a nice dinner and celebrate our two year anniversary but neither of us could reconcile celebrating when sweet Addie was so clearly miserable.   We grabbed a quick dinner and bought a box of Sprinkles cupcakes and both spent the night at the hospital, holding her and hoping we were providing her some comfort.

The next day was the fourth of July and Addie was progressively worse.  Her whimpers had become more frequent and they now sounded like sad kitten mews- like she somehow lacked the energy to cry but had to let us know she was in pain.  Her breathing had a grunt behind each breath and while she still had no fever, her heart rate and breathing rate had both gone up considerably while her blood pressure had dropped.  It was now undeniable something was very wrong and the doctors ran the full range of tests.  The immediate concern was some sort of bacterial infection, perhaps pneumonia? that was making her breathing more difficult and causing her general misery.  But, the blood work that came back all seemed benign for such markers.  There was a lull at that point, nothing they had feared had turned up and no one was sure exactly which direction to head in now.  Our nurse encouraged us to go home for a few hours since we had been living up there and see my family on 4th of July.  While I know she hoped the break would restore my own struggling spirit, I just worried the whole time and called her to check on Addie constantly.  I was actually relieved to get back up there and determined I would just have to stay by her side and love her with all my strength until she got back hers.

Later Monday we got our first clue from a chest X ray.  Although her lungs did not look overly ominous, it was clear there was some fluid in them and that could be causing the grunting and greyish coloring.  More significantly though, the doctors noticed that her heart looked abnormally large on the X ray.  They were able to pull up a previous recent X ray and confirm that in fact her heart looked significantly bigger at present. It was the weirdest feeling because initially I felt very relieved that they had some clue what was going on.  I had found the confusion and complete lack of answers maddening but that relief was certainly short-lived as hearing these doctors talk about my baby's heart filled me with fear!  Certainly I was no stranger to hearing bad news about my babies' health or organs, and yet there is something instinctively frightening when it is their heart you are talking about.

Tuesday morning brought a series of heart tests, an echocardiogram and some specialized blood work, and Addie was even more pitiful.  The monitor showed that she was breathing 100 times a minute and that her heart was beating 200 times a minute- it was clear her body was working incredibly hard.  The sad kitten whimpers continued and her coloring was greyish and watching her suffer like that was breaking my own heart into a million pieces.  The test results were analyzed and the doctors came and talked to me and told me that Addison was in 'Congestive Heart Failure'.  How my own heart did not stop at that moment I will never know but those sounded like the worst three words I had ever heard.  While I was now an expert on kidney failure and had some fleeting experiences with respiratory failure, I knew absolutely nothing about heart failure.  But I knew enough about biology and the body to know that if your heart fails, you fail. More than any other diagnosis we had ever been given, this one just terrified me.

I did really completely understand those words at that time.  I understand it better now and realize that basically her heart had absorbed so much fluid (it was congested with fluid) that it was too swollen to pump effectively.  I am sure someone did try and explain it to me then but all I could hear was HEART FAILURE.  Those two words repeating in my head over and over.

I didn't break down and cry, though.  I was too scared for that and too overwhelmed.  I just sat there numb and nodded a lot.  I tried to process everything they were telling me as intellectually as possible while trying to block out my feelings and emotions to the extent it was feasible so that I can keep my composure and be the strong mom I knew Addie needed at that moment.  I remember at one point on that Tuesday one of our nurse practitioners came and sat down beside me and said 'I'm worried you don't understand how serious this is.'  She had mistaken my facade of togetherness for confusion over the magnitude of what was occurring.  Although I tried to assure her that I did understand, she continued to explain to me what we could lose Addie and that she may not make it through this.  Of course I fully knew that but having to hear it spoken certainly did ache my broken heart further.

My mom and I talked about it and both agreed that we couldn't put those awful three words up on Facebook or out there.  We knew they would inspire that same sense of sadness and panic in others that they did in us and we did not want our families and friends burdened to that extent.  And on top of that, I just don't think we could acknowledge them in that way.  Putting it in writing would authenticate the diagnosis in a way we just couldn't face.  We could hardly bear to say the words to each other or out loud. Congestive Heart Failure. It was just too upsetting.  So we told people that Addie was having some issues and complications and needed prayer but kept the true intensity of the situation to ourselves.

There was no easy solution because we did not truly understand why this had happened.  It was definitely suspected that it was related to her dialysis and excess fluid in her body.  It did not make medical sense though for mathematically we had pulled plenty of fluid off of her.  Her twin brother had experienced the same initiation to dialysis and he was not having this issue.  We had to question then if she had some underlying heart condition that had merely gone undetected until the initiation of dialysis.  Her kidney doctor felt that all the changes between losing her last kidney and starting dialysis had led to dramatic changes in her heart's structure and function.  There was a long explanation about the role that her thyroid may be playing. None of the hypotheses though came with a clear plan for a quick solution.  For Tuesday night, our goal would be to aggressively pull fluid off her with dialysis and to see if we could dehydrate her heart back to functioning.

Over night we effectively dehydrated her such that her eyes sunk in and she looked like a skinnier version of her grey sad self but the monitor and her kitten whimpers revealed we had not made any great progress.  She continued to breath 100 times a minute and her heart was beating excessively to compensate for how weak those beats were.  Amazingly she did keep her oxygen levels up but we knew it was wearing her body out to manage that.  I stood there Wednesday morning watching her struggle and feeling all the fears I had been trying not to acknowledge come at me at once.  The tears finally came and our favorite nurse Lori came and wrapped her arm around me and I told her what was weighing most heavily on my heart:

"I cannot believe I sobbed over her hearing.  I have spent the last week so upset over whether she would be able to hear and talk and how that would impact her as a teenager and that just feels so ridiculous right now. Now I might lose her before we even know all that and I don't care anymore if she can hear.  I really don't. I just want her to be okay.  That is all that matters to me anymore.  I just need her to survive and be okay again and I won't ever cry over her hearing again.  I don't need God to heal her hearing, I just need him to heal her heart."

It was a moment I will never forget and a moment I still think about when the sadness over developmental issues creeps back in.  On that day, Addie's heart had yet to be healed but God was working then on healing mine.

Lori reassured me that it had been normal and okay that I cried over the hearing but understood and agreed with me that right now we just needed healing for her heart.  She said all the right things and was a great source of comfort.  I grabbed her hand and told her she had to stay by my side all day and couldn't leave me!  She managed to make me laugh by expressing her concern over needing to pee at least every now and then!  But she did stay by my side all morning.  Al was on his way up and my parents were available but I also knew that seeing Addie like that would break their hearts too so I was actually okay right then with being there by myself with Lori there.  It felt easier not to see how painful this also was for all of them.

The doctors all came in and it was clear something needed to be done.  The best option we had to get her heart working more effectively would require a central line going into her heart to deliver constant IV medication that would stimulate it to work while we continued to adjust dialysis and try and understand what had happened to it.   There was, however, a significant risk in this plan.  It would mean taking her to the OR and putting her under anesthesia with a weak heart.  Anesthesia and the placement of lines right near her heart has risks any time but doing that when she was so clearly compromised was far riskier.  Her heart could give out with the added medication or manipulation.  But then again, doing nothing hardly seemed a real option.  She was certainly going to get worse and run out of time and we would all just be watching helpless.  The doctors gave Al and I the choice which I always both appreciate and hate!  On one hand, I know it is important for us to get to make those decisions and feel in total agreement with a plan.  On the other hand, they are such incredibly difficult decisions and I worry myself sick about whether I am making the right one.  Al was very supportive of whatever I felt was the right thing to do.

After praying about it, I felt pretty at peace that we should do the surgery.  In most of these instances, I would favor taking a risk that I believed could save or greatly help my baby over doing nothing and watching them suffer.  The doctors supported the decision and plans were made for her to go to surgery that afternoon.  The NICU doctor who was on service at that time was known for anything but his bedside manner or compassionate approach.  He was a great doctor, no doubt, but his manner was abrupt and he had never seemed particularly warm towards me or my kids.  But that afternoon as we prepared for this surgery, he was particularly attentive and kind.  In fact, as Addie was wheeled down to surgery, he walked with Al and I down there.  And he stayed down there and talked himself to the surgeon who would be doing the procedure (it was actually an interventional radiologist) and he stood there with us waiting for them to take her in.  I was so enormously thankful for him being there as I knew he was carefully explaining to the anesthesiologist and surgeon the seriousness of the situation and making sure that everyone knew what they needed to ensure a safe experience.  And yet, at the same time, his unusual interest and support also reinforced to me just how serious this was.  I knew if he was sure Addie would be okay and if this wasn't a huge deal, he would have been with the other babies who needed him instead of us.   I wished very much we did not need him there at that moment and yet was so grateful that given we did, he was there for us.

Addie did fine in surgery and came out with a large line coming out of her femoral artery in her thigh.  It was large and sad and Al cried when he saw it and just kept saying 'but she loves to kick her legs'.  But, it sad as it may have been, it was delivering several important heart medications around the clock and hopefully helping her exhausted heart continue on as we continued to try and figure out what had happened.

The medication did provide some necessary short term relief for her heart and within a couple of days, her vitals had improved, her coloring had improved and although she was far from 'herself', the cat whimpers had disappeared and occasional smiles were spotted.  We were all breathing huge sighs of relief, certain the worst was past and disaster had been averted.

Our celebrations were premature though.  For while Addie's heart would be healed and mine along with it, it was not time yet.  These couple of days would provide a necessary break before things would go terribly wrong again.

Sunday, June 22, 2014

Chapter 16: So This is Dialysis?

Sometimes I still forget that most people have no idea what dialysis actually entails.  I have a tendency to casually refer to the kids as having been on dialysis like they will obviously know what that would mean.  In doing so, of course I forget that I once upon a time would not have know what that meant.  The word sounded daunting enough that I would have assumed it was very dramatic.  I probably would have pictured an enormous, intimidating loud machine and a child wailing in pain and lots of surgical masks and general anxiety in the air.

In reality, dialysis actually looks from the outside deceptively simple.  The babies were started on peritoneal dialysis which is a form of dialysis that essentially involves no more than putting water into the babies bellies and then pulling it back out again.  Hemodialysis is considerably more complex in set up and nature but peritoneal dialysis can basically be done with a bag of sugar water and a tube. I think that the part of dialysis that most people found so surprising was just how simple it actually is- as long as it is working, of course.  Dialysis seems amazingly easy when it is going smoothly and terribly complicated and confusing when complications arise.

We were actually lucky to get a 'sneak peak' at what dialysis would involve because we shared a NICU room with a baby who was already on dialysis.  This sweet baby boy had been on dialysis for several months by the time Max and Addie would begin.  And so we were able to both observe what was going on in his corner of the world and ask his mom questions as we approached the time to begin dialysis.  We knew that there was no fan fare, alarms and drama when their neighbor went on dialysis and I think it definitely reassured us.  Had we not had that daily experience of seeing his life on dialysis I know we would have been way more frightened so I am thankful that God placed us in the same room with that sweet boy so that his journey could provide reassurance for us.

Without kidneys, a person cannot pee at all.  It's a weird concept, especially when you are looking at a baby in dry diapers!  Without peeing, two things build up in the body which cause problems- water and waste products.  Our dialysis buddy in the room still had his kidneys so he did still pee and could get rid of water on his own but his kidneys just did not effectively filter out waste.  So dialysis actually had a smaller role for him.  But for Max and Addie, they would rely on dialysis to get rid of all fluid and all waste that accumulated in their body.  The premise of peritoneal dialysis is that you can place sugary water into the person's abdomen and as the blood circulates through, the magic that is osmosis and diffusion will pull both toxins and water out of the blood and into the sugar water.

I'm erring on the side of simplicity in explaining this, although I have done an hour long presentation to the 9th graders at my school explaining the process in terms of the principles of osmosis.   But without my PowerPoint full of diagrams and without risking boring you to tears, it can be difficult to go into it with that level of scientific detail.  So I'll stick with a more basic understanding which is definitely all you need to understand the impact that dialysis had on Max and Addie and on our family.

After approximately an hour, the once pure sugar water is now full of wastes and extra water and cannot really do its job anymore (a phenomenon called Equilibrium).  At this point, that old water needs to be drained out of the body and replaced with new sugar water.  Which will sit for an hour, and then be drained. Which is really all there is to dialysis.  Fill the belly with sugar water.  Wait an hour.  Drain.  Fill with new sugar water.  Rather, Rinse, Repeat...

Initially, this process was done by their nurses.  I will always remember their first day on dialysis, it was a Sunday and instead of sharing a nurse, they would each have their own nurse.  Max had our favorite nurse Lori and Addie had a nurse we did not know as well but who was familiar with dialysis.  The time came to begin dialysis and the nurses very simply open a clamp, placed a bag of sugar water on a pole and allowed water into the babies.  Then they set their little hand held kitchen timers and we sat there.  And that was all. It was so amazing to me that this moment we had so anticipated and so built up was so incredibly boring!!

After the hour was up, the nurse would then drain the water out of the body by turning another clamp.  The nurses made it fun and turned it into a competition to see whose baby could drain more which I remember finding very funny and was very appreciative for anything to add a bit of energy to this process that I was otherwise finding to be monumentally dull!  And the afternoon passed like that- clamps were turned, the babies were held and life continued absolutely like normal except for once an hour when the big drain would happen and we would all wait to see who baby would win that round.  (I am pretty sure Max won Day 1 on dialysis which is most appropriate because Max was definitely the dialysis golden child in the long run!)

Over time, we would be able to get a machine to do the job those nurses were doing- filling and draining the babies at set times but it would be a couple of months before we would be able to switch to the machine.  So for now, it would be lots of idle time with our two nurses, lots of unexciting turning of clamps and some bags of little more than clear kool aid.   So when I would tell people the kids were starting dialysis I always thought they probably imagined it being way more dramatic and exciting than it was!

Like i mentioned earlier, though, the key with dialysis is that it is simple when it is working well.  The first couple days on dialysis lured me into a false sense of security really.  I was so underwhelmed by the process that within a few days I had abandoned all my worries and fears and decided dialysis was easy and things were all going to be sunny and rosy from now on.  Never did it occur to me that this simple sugar water turning clamps process could go wrong in as many ways as it would.  Sitting there bored on that first Sunday was not preparing me for the weeks that were coming when the difficulty of finding the right fluid balance would send my baby girl in heart failure.

I think I will always have a love hate relationship with dialysis.  Dialysis kept my babies alive so I will always be grateful for the medical advancements that led to it being able to be used even on babies.  And when it worked well, dialysis was blissfully simple and painless and we were able to continue with life as normal quite well on it.  However, at the end of the day, dialysis can never replace a kidney and is a flawed process.  And when it doesn't work, it can lead to terrifying life threatening crises.  My love and gratitude for dialysis can only be matched by how haunted I will always be by some of the horrible scares Addie had while on it. But, complications and limitations included,  I do know that dialysis was monumental in our journey and that it was necessary to sustain our family while we waited on transplant.  So for that, I will ultimately always be glad for those bags of sugar and clamps that did the best they could to play the role of the kidney understudy those months in Max and Addie's story.