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.

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