Chapter 23: Shouting I love you

During the busy months of Addie recovering from her heart failure and getting trained to get them home and then adjusting to life in our Gameroom Hospital, it was easy not to worry about their hearing loss.  In those days when Addie was so sick, I had prayed and promised that I would not mourn over hearing if she could survive that crisis.  I was determined to stay true to that promise and in some respects, I can say I did.  No tears were shed, no ruminating occurred, few moments of sadness invaded.  But the reason I was able to do that was only because I simply did not think about it.  When I started to think about it, I just blocked it out and focused on something else.  We did not tell anyone other than very close friends so I never had to explain it or talk about it or deal with it in any tangible way. I think months of denial or ignoring the diagnosis were necessary to keep me from feeling the despair that had seemed so strong initially, but they did little to help me truly reach a point of acceptance.  Once the babies were home and getting more settled, I knew the time to address their hearing loss was fast approaching.  They had a repeat hearing test scheduled for early October and the date sat on my calendar with a big red circle around it.  Yelling at me that my days of distraction and denial were coming to an end and I was going to have to think about, talk about and find a way to accept their hearing loss.

We were doing another hearing test in hope that the results would prove to be different.  The babies seemed to hear some sounds and react more to noise than we would expect if they truly were profoundly deaf so we just could not seem to accept those results.  The doctors offered us a small morsel of hope in telling us that some research suggests that the ABR brain wave hearing tests they had done are less accurate when they are done in an operating room.  The equipment and heavy anesthesia could have made their hearing seem even worse than it was.  Needless to say, this was the one thing they told me that we clung to most enthusiastically.  Therefore when I thought about that day approaching in October, I prayed and prayed that it would tell me my kids could hear something.  The doctors were very clear that we were not going to find out they had perfect hearing.  The best we should hope for is that they had only moderate loss and could still hear very loud sounds.  And so that is what I hoped for and prayed for, in those few moments when I actually allowed myself to think about it.

When the week had come and they were about to have their tests done, we were all anxious and I really felt like we needed people praying and supporting us.   By now, Facebook had become my source of support and the likes and comments from our friends reading along and following lifted me up on hard days and encouraged me on the good ones.  Sharing the details helped me feel less alone and I found comfort in letting people join us on this roller coaster we were living on.  But I had not shared about their hearing loss on Facebook or in any of the group emails we had sent.  I was initially too devastated and then far too busy trying not to think about it.   And then when the week came and I did want to share, I could not figure out the words.  How do I quickly say what we had learned, what was coming up, what we hoped for, how we felt and hurt and yet hoped.  I actually started to type in a few posts but never could figure out how to say it.  And I was never sure I wanted the 400 random people following me there to all read my deepest feelings sandwiched between a picture of food and a gripe about traffic.  Facebook just did not seem like the appropriate place to share something so big and so sensitive for me.  In the end, the solution I came up with was exactly what I needed both then and for the months ahead- I decided I would start a blog. I needed more space, more words, more structure if I was going to open up more and share my heart more.  And I wanted a way for people who were interested to be able to come and read but that was not thrown at people who happened to know me ten years ago and do not particularly care.  A blog that I could link to on Facebook seemed perfect. 

And so in September of 2011, I found my voice.  I started a blog with a simple introductory post and then within that week, I wrote one of the hardest things I had ever had to put words to.  I shared that we believed Max and Addie had lost their hearing from life saving medications and that it hurt my hurt to imagine them living in a silent world.  I asked people to pray that the upcoming test would show that they can hear.  And then I pushed publish and I felt an immediate release and weight falling off my shoulders.  Like now that I had told people, the pain didn't feel so personal and hidden.  And knowing that it was something I could tell people about made it not seem as terrible as it once had.   As the outpouring of love and support and assurances of prayer came flooding in, I knew that this blog was going to be a very important and special thing for me.  

The morning after I published that post, we headed downtown for the hearing test.  We were supposed to try and keep the babies awake and then drug them with Tylenol when we got there.  We totally failed of course and Addie fell asleep in the car.  She then woke up all alert when we got there and we had to give her the Tylenol and then wait over an hour while Al's dad patiently strolled her all up and down the hallways trying to get her back to sleep.  Once we got them in a nice deep sleep, they attached electrodes to their heads and put ear pieces into their ears.  They would deliver sounds to their ears and then wait and see if the auditory center of the brain would receive the message.  Even though they were asleep, their brains should still fire up if they could hear sounds at that volume or frequency.   Thankfully the audiologist doing the test was great and explained how it was all working and let me stay in the room and watch the screen and see the results in 'real time' if you will.  It definitely helped ease my anxiety and I was so glad not to be sitting in another room just waiting on answers I wasn't sure that I wanted.

By the time the doctors finished up and were ready to talk to us, I was already smiling.  Watching alongside, I knew they were hearing.  Not all the sounds of course but I saw their little brains firing to sounds and that was all I needed to be sitting there with a huge smile just barely able to pay attention to everything they were telling me.  When they told me the babies had moderate hearing loss in both ears, they probably had never seen someone react to that news with such elation.  I kept saying 'so they can hear!!!' to which the doctors with a lot of 'yes, but' statements.  Max and Addie could hear loud speech when there was little to no background noise, but a lot of normal conversation may be too quiet or jumbled for them to decipher.  They talked to me about hearing aids and all the hard work that would be ahead.  I did hear what they were saying but all I could focus on was that they can hear.  I looked right at the doctor and said 'yeah but if I say it really loud and in a nice quiet environment, you are telling me that my kids can hear me say 'I love you'.  The doctor couldn't help but smile at that point.  Yes, they could.  

We walked out of the hospital that afternoon with smiles shouting everything we could think of at our babies. And I went home and opened up my new blog and carefully described the speech banana and the scientific background behind what we learned.  But mainly I shared my joy and told everyone that there would be a lot of shouting 'I love you' at our house tonight.  I loved that because I had shared my fears and sadness over their loss, that I was now able to share my joy at what we had been given back!  

I think about it a lot now, about why we ever had to go through being told they were deaf on that awful surgery day.  There were moments when I felt like it was just unnecessary extra pain. Surely we would have been better off just knowing right away that it was moderate and not complete loss.  But, over time, I have reached a point where I am glad for how it happened.  Because if we had gone that day in October thinking they had perfect hearing and gotten the same news, we may have been crushed.  We may have walked out defeated and always viewed their moderate loss with sadness.  Instead, by thinking we had loss so much more, we saw it as gain.   I count every word my kids can hear as a gift, more than we had once thought they would have.  By being exposed to what could have been, we viewed a lesser loss instead as a gain.  And since dealing with their hearing loss has been such a difficult journey and experience for me, I think that is exactly how I needed it to happen.  I needed to reach a point where I appreciated a small amount of hearing.  I needed to mourn and cry and then be primed to rejoice as I saw those brainwaves firing.  I needed to know what they could have totally sacrificed so that there was genuine joy in my voice as I shouted I love you every night putting them to bed.

From the experience, I found gratitude in what is.  And I found a voice for myself in my blog.  I am not sure if I would have started it were it not for my struggle to explain their hearing loss.  And over the difficult months ahead, my blog was therapy for me and an important way to keep the world updated during unforeseen crises.

Moderate hearing loss has proven to be a much bigger deal that we thought as we skipped out of the doctor that day.  The doctor probably had some really great warnings and points in her 'yes but' comments that I ignored.  Sometimes it is even hard to think about that day and the simple happiness we felt at those brainwaves without feeling somewhat foolish, not understanding what challenges would still lie ahead.  But, even knowing all that we do know now, I am still grateful for the joy that day.   It was what we needed.  It was the hope that I craved and it was the appreciation and gratitude that I needed to have.  It has gotten harder in a lot of ways but one thing remains the same.  We still end every day shouting I love you.  

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.

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.