One of the greatest heartbreaks and challenges I have faced began through an innocuous unplanned completely non dramatic routine test on a random day in the NICU. Being used to crises coming at us with flair and intensity, this one snuck up on us and caught me unaware. It was a normal day in the life of my giant NICU residents and a technician entered their room to do a standard newborn hearing test on one of their neighbor babies. While they were there, someone realized that despite being 5 months old, Max and Addie had never had a newborn hearing screen so hey why not go ahead and get that done. There had been no mention of concern, no talks or plans to have this test done. I was not even there at the time and no one mentioned that it was going to be done because as far as we all thought, they would pass and it would just be something to tick off as done. No big deal.
Except they didn't pass. At all. They both failed their newborn screen in both ears. And I show up at the hospital to hear these concerning results to a test I never knew was happening and had never even thought to be worried about. I probably should have been really upset then but the nurses and doctors all reassured me that the test was not particularly accurate or informative and that all it means is that they would do another more detailed test to determine what was going on later. So, because it hurt too much to think about and consider that test actually being correct, I clung instead to my dear old friend Denial. I did my own highly scientific tests of making loud noises and checking if they startled or responded and decided clearly this was a more accurate measure than their fancy machines and so I dismissed that test and determined not to worry about it until we got the 'real' test done.
The sedated ABR would be a brain wave test that would be done when they were asleep to see if the pathways that carried sound messages from the ear to the brain. Given we wanted to reduce the number of occasions that we exposed the babies to any kind of sedation or anesthesia, the idea was crafted to perform this test on the day of their upcoming big surgery to remove their remaining kidney. Brilliant plan! Especially if your goal was to create the single most stressful day of all time for the mom, it was essentially a fool proof pathway to success.
So with that hearing test on the schedule for a month away in June, I forced myself to forget about it until then! Hannah's visit certainly helped and by the time the big day arrived, I had rehearsed my own denial enough times that I genuinely expected to get great results.
June 25 was the day their last kidney would come out. While we had hoped that taking out their first kidney would perhaps reduce their protein loss enough to delay dialysis, it really showed little impact. They were continuing to lose too many proteins to leave the ICU and they were constantly in danger of too many life threatening issues. Removing the other kidney would be the only way to stop the protein loss that was sabotaging their health. Of course it would come at the cost of losing the ability to remove wastes and water from the body. A dialysis machine would then need to take over that job. They had the catheter in their bellies for that and it was healed and ready so it was time. It was a strange feeling approaching the removal of their kidney and beginning dialysis. On one hand, we knew it was necessary for them to come home so I was excited to get it done and move in that direction. On the other hand, we were lunging into a huge unknown and there would be no turning back. And we had heard enough about dialysis to know that for some it worked smoothly while for others it was ridden with complications. And regardless of the outcome, I knew now from experience that sending both of my children to the OR for back to back surgeries was going to make for a brutal day.
The day arrived and we had one of our favorite nurses on and I do not remember much of the day prior to Max's return. By this point, we had done a huge surgery day and enough small surgery days that the nervousness and dread of the morning of had lost its novelty and intensity and I was saving my energy for their return. So after a morning of waiting and trying to distract myself with Addie, the moment I was dreading came and they wheeled Max in on his ventilator with a new incision on his body and him looking completely out of it and changed. As those familiar tears started to well up as I saw him and had to hand over Addie for her turn, a doctor who was helping wheel him back picked that moment to tell me that they had done the hearing test and he did not hear anything in either ear.
I believe words are powerful and I often believe I can use them to portray strong emotions. But I am certain I lack the words to describe what that moment felt like. Partly because looking back on it now, I can see how they were not telling me the worst news I would hear. Now I can look at it and see how I should have responded. Oh but that is now and this was then. And it felt like I had just been shot through the heart. My emotions were already on edge and I just could not handle this news. My denial was demolished and I cannot even fully explain why but it broke my heart. And it crumbled my stoic composure and I just started sobbing.
And sobbing. And sobbing.
It was to this day, the only time I have ever truly just lost my ability to snap out of it. It was the only time in 8 months that random doctors and nurses had seen me just a complete emotional wreck. And for a while, nothing anyone could say felt comforting. I would eventually regain my composure but not through acceptance and comfort with the news but merely from sheer exhaustion and numbness. As I had already assumed, Addie came back from the surgery with the exact same report- profound hearing loss.
The best I can explain it is that despite all we had been through, until that moment I had still fervently believed our future was going to be 'normal'. I had already determined that we would get them both transplanted and that after that, my life would go back to looking exactly like I had imagined it to be. Two years of difficulty and then it would all just be sunshine and perfection after that. Even though doctors had told me their kidney condition would have life long impacts, I didn't really believe that. My life was going to still be normal. And back then normal still felt really important to me. And the news that my children could not hear caused an enormous disruption in my plan for a typical life. It suddenly meant that there would be challenges long term. Life was not going to just turn into my previous vision. I grieved for the loss of my so cherished hope for normalcy.
And I grieved for silence. I love to talk. I love music. I love laughter. I love Hearing. And when I heard that my sweet babies could not hear, I imagined them living there in that hospital for six months in SILENCE and the idea just broke my heart. That they weren't hearing me tell them that I love them. That they couldn't hear the stories we read them and the comforting words their sweet nurses whispered to them. I mourned that they were trapped in silence.
We told our parents and the other nurses and no one else. I did not know how to tell people. To compose a Facebook post to say that my babies do not hear was impossible. I did not yet have a blog to allow me to elaborate on such things. And there was definitely no way I could talk about it with people and find words in the midst of the pain. So for months, it was our private burden and pain. And at that point, it needed to be. My journey to peace and acceptance over their hearing loss was going to take time and I am glad I allowed myself the time to mourn and hurt and work through all those very real emotions before I began including others on that road. I am glad that by the time I shared the information, I was able to portray it as a challenge but not a devastation and as something that would impact my children but not as something that would define them.
The rest of the evening after their surgery passed in a flurry of emotions. I was so caught up in obsessing over their hearing that I was notably less affected by the surgery after math. Max was taken off his breathing machine early and did considerably better than he had after his last surgery, with fewer dramatic blue spells and better pain control. We knew we would wait a day or two on dialysis so the next 24 hours were for letting the babies rest and heal. And by all accounts, they were doing well on that task. I remember sitting in the NICU late that night looking defeated and troubled when one of the nurses I loved came in and assessed how Max and Addie looked and then questioned me. She asked me 'What is wrong? Look Max is extubated and he isn't blue and he is resting and they both came through surgery without any problems! This has been a good day!" and morosely told her about the hearing test. I guess I expected her to cloud over with pity and sadness and give in to my defeat but she continued smiling at me and said to me, "Well that's ok. You can deal with that. But for right now, for today, they both just survived major surgery and are doing great and that is worth being thankful for." I wish I could say my attitude completely changed then but it would take more and longer than that. It did, however, give me the boost I needed to for that night anyway, to take a break from grieving their silence to acknowledge with gratitude what all they had survived that day.
That day was a painful part of the process of demolishing the ordinary dreams I had so valued for my family. I sat that day crying at what I was as brokenness. It would take me a long time to realize that God was knocking down my lesser vision for His greater plan for an extraordinary life. I will always remember the heartbreak of that June day, but I can now see it's role in a beautiful new creation as well.
Sunday, June 8, 2014
Sunday, June 1, 2014
Chapter 14: The Light in the Middle of the Tunnel
The Light at the End of the Tunnel.... it's a commonly used phrase because everyone who has been through a particularly challenging stretch in life knows the importance of looking forward to an end to the trial. When we can see the end or the promise of a new beginning, we have greater strength and endurance to keep walking through the darkness towards that light. Without a light, tunnels seem to stretch on indefinitely and the perseverance and hope to keep trekking can seem impossible. I remember vividly Al and I lying in bed at night the first couple of weeks after the babies were born and him saying "2 months. We can do it. 2 months and it will be their due date and they'll be home from the hospital and everything will be how it was supposed to be. We can do this for 2 months." It was like our little mantra those early days when preemies and the NICU felt so overwhelming. We would just stare into that light and keep on. And then within three days, the babies were suddenly diagnosed with a lifelong and life threatening kidney condition and were transferred downtown and Dr Doom and Gloom was saying 6 months to a year in the hospital and that is assuming they survived the long list of risks. And we couldn't see the light anymore. All we could see was a long dark tunnel full of twists and turns that we were afraid to navigate our way through. We had no idea when they would come home and we felt like we did not know what to look forward to or how to stay hopeful. Without a light, the tunnel felt defeating.
But one lesson I learned then and still cling to is that you won't always have the sight of a light at the END of the tunnel. Sometimes there are just too many bends along the way to get a glimpse of it. Some tunnels are so far reaching that there may not truly even be an end. But, there will be lights along the way. Instead of straining your eyes to see to the end, I have learned to look for a light in the middle. The tunnel may not be over but it's a point where there is a break and a moment of light along the way. And those lights during the tunnel will sustain you far more than just charging to the end ever would anyway.
The day after the meeting with Dr Doom and Gloom, I caught a glimpse of what would be my biggest light in the middle of our NICU tunnel. Knowing how scared and overwhelmed I was, my best friend Hannah from Australia called me and told me she was coming out to visit me and stay with me for a couple of weeks. She told me I could pick when and she would be there. It was exactly what I needed to hear that day! I had lived in Australia for 10 years, lived with Hannah for several years during that time and since living in America only two years at that point, no one had come close to filling her shoes. Since I knew I would be going back to work and I knew this road was going to be long and I would need something in the future to look forward to, I picked early June. Hannah booked her ticket that week and my calendar suddenly had this big light shining up June.
I had no idea when my babies would come home. I had no idea what dialysis would be like. I did not know when they would get transplanted or anything about the future. I wasn't sure what to look forward to with them so I looked forward to Hannah's visit. For months on hard days, I would count down weeks and then days until she was there. When I did feel myself getting swallowed by the dimly lit tunnel, I looked to the light of her arrival to keep my spirits up. And it worked. I just cannot describe what a blessing that joyous anticipation was during those months. I hadn't realized until Hannah booked her flight how much I needed my best friend and how much it would mean to me to have her there in my NICU world lighting it up with her sense of humor and empathy and ability to find joy in all circumstances.
June rolled around. The babies were stable. Taking one kidney out had not had a huge impact on their health (which we expected but had hoped none the less it would) so we knew we would be removing the other kidney and using their now healed dialysis catheter soon. We were basically just waiting for their late June surgery date with all kinds of apprehension at starting that process. School let out for summer so I was no longer torn between my two worlds and Hannah arrived that week. I could barely contain my excitement seeing her there in baggage claim, my bright light finally being there in front of me. And of course even though it was like 10pm and I told her we could go home and sleep she was like 'Nope I want to go to the NICU and see those babies now. I don't care if they are sleeping, I just need to see them!' Sharing them with her and seeing her love them and hold them and delight in them brought me more joy than I could hope to explain.
The next two weeks were just pure joy. We had found happiness in our hospital routine and our days had been sprinkled with laughter and contentment even despite the difficult circumstances but nothing compared to the joy of those two weeks. Every morning we drove nice and early down to the hospital and Hannah and I would hold the babies and play with them while the doctors made their rounds. Hannah took as much joy as me in picking outfits out for them each day and capturing their expressions on camera. She would help me feed them and point out funny things going on with them or around us that would make me laugh and see this new world in a whole new light. She herself is a doctor, a psychiatrist who was fresh out of medical school, so rather than finding the medical side of things daunting, she found it fascinating. She would soak up details and I reveled in having someone anticipating lab results with the same enthusiasm I did. She created nicknames for the doctors and nurses that to this day make me laugh when I think about them. Instead of feeling like living in the hospital every day was depressing, she made me see all the humor and joy in it and I was now pretty sure our daily life had more comedic material than a Seinfeld episode.
Every day for lunch we would leave and go have a delicious lunch at the nearby shopping center. We would stroll the shops and she was fascinated by all the American clothing and sales. It was the first time I had shopped in 6 months and it felt so refreshingly normal. We would head back from our lunch break to then spend the afternoon back with the babies, taking turns feeding them, changing them and making them laugh. Al or my parents would come up many afternoons and reveled in the new joy that Hannah was bringing to our old routines! She never rushed me to leave or go do sight seeing or fun activities. If I wanted to stay at the hospital until late and rock them to sleep, she would stay with me. If the babies were asleep early or super stable and I was up for leaving early, she was always up for a pit stop on the way home at a cupcake shop on her quest to find the best Texas cupcake. Some nights we would go out for novelty dinners, some nights we would come home and Al would cook for us, some nights we would meet my parents or friends. But every night we would stay up sitting in front of the television laughing about anything that came to mind like we had for the 2 years we had lived together in college. And every night for those two weeks, I went to sleep happy.
I had my greedy moments where I felt sad that my dear friend was going to have to leave and go all the way back to Australia. I wished desperately that she lived close by and that they wonderful days could be more frequent. But, I did not want that sadness to taint the joy so as her leaving was approaching, I focused on just making the most of every day. I will always remember her last morning and us sitting up at the NICU with Addie in her arms and her lamenting how much she would miss her. Hannah's suitcases were packed and she was dressed for her flight and so of course Addie chose that moment to spit up all on her. Being the good sport she was, Hannah just laughed and said that now she would be extra sad the whole flight when she kept getting whiffs of Addie's spit up on her and missing being with her. I dropped Hannah off at the airport and sobbed and sobbed the whole way back to the hospital. I would miss her dreadfully sitting in my NICU chair the coming days without her there making me laugh with her running commentary on NICU life.
Thankfully though, the light and joy that Hannah brought did not go away when she left. She left me with greater joy, an ability to laugh at the world around me and a renewed spirit. It would be 18 months before I would see Hannah again and I miss her every day I do not see her but my weeks when she is here are God's gift to me, his lights he plants during particularly dark moments in this road. Hannah and I had no idea when we picked those weeks in June that within two weeks of her leaving, I would be facing the worst couple of weeks of my life with Addie's heart failure. We picked dates out of convenient but I know God ordained those dates because I would need those two weeks of joy to survive the two weeks of heartache coming. My two weeks in June were definitely not the light at the END of the tunnel but it was my light right in the middle of the tunnel. It was my refreshment and my break and it kept me sane and reminded me that no matter what you are going through, there will be laughter, friendship and joy along the way.
But one lesson I learned then and still cling to is that you won't always have the sight of a light at the END of the tunnel. Sometimes there are just too many bends along the way to get a glimpse of it. Some tunnels are so far reaching that there may not truly even be an end. But, there will be lights along the way. Instead of straining your eyes to see to the end, I have learned to look for a light in the middle. The tunnel may not be over but it's a point where there is a break and a moment of light along the way. And those lights during the tunnel will sustain you far more than just charging to the end ever would anyway.
The day after the meeting with Dr Doom and Gloom, I caught a glimpse of what would be my biggest light in the middle of our NICU tunnel. Knowing how scared and overwhelmed I was, my best friend Hannah from Australia called me and told me she was coming out to visit me and stay with me for a couple of weeks. She told me I could pick when and she would be there. It was exactly what I needed to hear that day! I had lived in Australia for 10 years, lived with Hannah for several years during that time and since living in America only two years at that point, no one had come close to filling her shoes. Since I knew I would be going back to work and I knew this road was going to be long and I would need something in the future to look forward to, I picked early June. Hannah booked her ticket that week and my calendar suddenly had this big light shining up June.
I had no idea when my babies would come home. I had no idea what dialysis would be like. I did not know when they would get transplanted or anything about the future. I wasn't sure what to look forward to with them so I looked forward to Hannah's visit. For months on hard days, I would count down weeks and then days until she was there. When I did feel myself getting swallowed by the dimly lit tunnel, I looked to the light of her arrival to keep my spirits up. And it worked. I just cannot describe what a blessing that joyous anticipation was during those months. I hadn't realized until Hannah booked her flight how much I needed my best friend and how much it would mean to me to have her there in my NICU world lighting it up with her sense of humor and empathy and ability to find joy in all circumstances.
June rolled around. The babies were stable. Taking one kidney out had not had a huge impact on their health (which we expected but had hoped none the less it would) so we knew we would be removing the other kidney and using their now healed dialysis catheter soon. We were basically just waiting for their late June surgery date with all kinds of apprehension at starting that process. School let out for summer so I was no longer torn between my two worlds and Hannah arrived that week. I could barely contain my excitement seeing her there in baggage claim, my bright light finally being there in front of me. And of course even though it was like 10pm and I told her we could go home and sleep she was like 'Nope I want to go to the NICU and see those babies now. I don't care if they are sleeping, I just need to see them!' Sharing them with her and seeing her love them and hold them and delight in them brought me more joy than I could hope to explain.
The next two weeks were just pure joy. We had found happiness in our hospital routine and our days had been sprinkled with laughter and contentment even despite the difficult circumstances but nothing compared to the joy of those two weeks. Every morning we drove nice and early down to the hospital and Hannah and I would hold the babies and play with them while the doctors made their rounds. Hannah took as much joy as me in picking outfits out for them each day and capturing their expressions on camera. She would help me feed them and point out funny things going on with them or around us that would make me laugh and see this new world in a whole new light. She herself is a doctor, a psychiatrist who was fresh out of medical school, so rather than finding the medical side of things daunting, she found it fascinating. She would soak up details and I reveled in having someone anticipating lab results with the same enthusiasm I did. She created nicknames for the doctors and nurses that to this day make me laugh when I think about them. Instead of feeling like living in the hospital every day was depressing, she made me see all the humor and joy in it and I was now pretty sure our daily life had more comedic material than a Seinfeld episode.
Every day for lunch we would leave and go have a delicious lunch at the nearby shopping center. We would stroll the shops and she was fascinated by all the American clothing and sales. It was the first time I had shopped in 6 months and it felt so refreshingly normal. We would head back from our lunch break to then spend the afternoon back with the babies, taking turns feeding them, changing them and making them laugh. Al or my parents would come up many afternoons and reveled in the new joy that Hannah was bringing to our old routines! She never rushed me to leave or go do sight seeing or fun activities. If I wanted to stay at the hospital until late and rock them to sleep, she would stay with me. If the babies were asleep early or super stable and I was up for leaving early, she was always up for a pit stop on the way home at a cupcake shop on her quest to find the best Texas cupcake. Some nights we would go out for novelty dinners, some nights we would come home and Al would cook for us, some nights we would meet my parents or friends. But every night we would stay up sitting in front of the television laughing about anything that came to mind like we had for the 2 years we had lived together in college. And every night for those two weeks, I went to sleep happy.
I had my greedy moments where I felt sad that my dear friend was going to have to leave and go all the way back to Australia. I wished desperately that she lived close by and that they wonderful days could be more frequent. But, I did not want that sadness to taint the joy so as her leaving was approaching, I focused on just making the most of every day. I will always remember her last morning and us sitting up at the NICU with Addie in her arms and her lamenting how much she would miss her. Hannah's suitcases were packed and she was dressed for her flight and so of course Addie chose that moment to spit up all on her. Being the good sport she was, Hannah just laughed and said that now she would be extra sad the whole flight when she kept getting whiffs of Addie's spit up on her and missing being with her. I dropped Hannah off at the airport and sobbed and sobbed the whole way back to the hospital. I would miss her dreadfully sitting in my NICU chair the coming days without her there making me laugh with her running commentary on NICU life.
Thankfully though, the light and joy that Hannah brought did not go away when she left. She left me with greater joy, an ability to laugh at the world around me and a renewed spirit. It would be 18 months before I would see Hannah again and I miss her every day I do not see her but my weeks when she is here are God's gift to me, his lights he plants during particularly dark moments in this road. Hannah and I had no idea when we picked those weeks in June that within two weeks of her leaving, I would be facing the worst couple of weeks of my life with Addie's heart failure. We picked dates out of convenient but I know God ordained those dates because I would need those two weeks of joy to survive the two weeks of heartache coming. My two weeks in June were definitely not the light at the END of the tunnel but it was my light right in the middle of the tunnel. It was my refreshment and my break and it kept me sane and reminded me that no matter what you are going through, there will be laughter, friendship and joy along the way.
Sunday, May 25, 2014
Chapter 13: A Timely Gift
There is something incredibly magical about a small babies' smile. Especially their first few smiles. After weeks of fatigue, fear over doing the wrong things and the steepest learning curve of your life, one smile and suddenly motherhood feels rewarding, manageable and fun. With one smile, you are reassured that they do feel loved and safe and that you are doing something right. A baby's first smile is one of the most wonderful gifts of parenthood. And Addie's was delivered to me in my moment of greatest need. Her smile would sustain me through difficult days like we had not yet known.
After our isolation drama and monumental decision that we would move forward with the big surgery to take out a kidney and put in a dialysis catheter, we had a few weeks of calm before the lurking next storm. April brought warmer weather, bigger babies, increased stability and a comforting routine to our hospital days. I had gone back to work from maternity leave and decided early on that I would not miss a day of being with them at the hospital so my days belonged to my school and my evenings to my babies. It was exhausting but perhaps the great blessing of fatigue is the lack of energy to worry, brood or contemplate. It was a stage of putting one foot in front of the other and seeing the days fly by in a blur of activity. The weekend before their surgery was Easter Weekend so it was easy to allow ourselves to become consumed in smocked bunny clothing, brand new Easter baskets, extra visitors and a copious supply of egg shaped chocolates. In fact, those few days before the surgery were among the happiest of our days in the NICU.
Between the exhaustion and the bunny festivities, I managed to prevent myself from thinking terribly much about the surgery looming on the horizon. It wasn't until late in the evening of Easter Sunday when the bunny clothes were exchanged for hospital gowns, the food was all packed away and the babies had been NPO, meaning no fluid allowed, for the next morning's surgery that I was jolted with the reality of what the next day, or days would be bringing.
I've often debated with myself which I have found more emotional and difficult to face: an emergency surgery on a sick baby or a planned surgery on a seemingly healthy baby. I have always found there to be something somewhat unbearable about handing over a stable content child knowing that things were inevitably going to get worse before they could even potentially get better. In those moments, my arms want to cling onto my child and my eyes swell up with tears as they stroll them away. It is scary and sad to send a sick baby off to the OR but for me, to send my well child away just would break my heart and defy all my logic. Therefore I faced that morning with a particularly high level of dread and angst. Although I knew in my head all the reasons why this was the pathway we needed to take and that removing the kidney and placing a large plastic tube in their bellies was the best decision, it felt very wrong when the time came to do it.
There have been only two days when both babies have gone to surgery on the same day and this was the first one. For lots of practical reasons, piggy back surgeries were the best way to approach this- it suited the surgeon and for me who was back at work and needing to take time off for their recoveries, it definitely made more sense. The fact that it would prove to be absolute torture for my poor mommy heart simply wasn't our number one concern. So early in the morning on Monday April 25 2011, they took Max back for his surgery. He was gone probably 5 hours and we sat around with my parents all taking turns holding Addie, praying and just trying to pass the time. My heart was heavy with my baby boy in the Operating room and knowing that any relief from his return would be overshadowed by the sadness of Addie taking his place. As I sat there during those hours with Addie in my arms worrying, she did something for the first time- she looked right at me and smiled. And smiled and smiled and smiled. She passed the hours looking into my eyes and smiling at me. We had caught random smiles from both of them at different times and they were both starting to flash occassional but still random grins, but these were our first social interactive back to back full fledged smiles.
And with those precious smiles, our hearts could not help but be filled with joy, despite the circumstances. The beauty of her precious smiles became stronger than the sadness of what that day entailed and our heavy hearts lifted at the priceless gift God had planned for us that morning. No doubt it was a gift that was reserved for our hour of greatest need- a joy we needed in that moment more than any time before.
I'd love to say that after those smiles that the rest of the day was a piece of cake. But while the smiles sustained and blessed us, they also made the terrible job of then handing Addie over to the surgeon that much more difficult. The few moments between Max's return and Addie being wheeled away were among the most painful I can recall. They bring Max in on a ventilator, completely out of it and his naked body covered in 6 incisions and with a seemingly giant new white tube protruding from his belly. He looked nothing like the little boy in his blue smocked bunny jon-jon the day before. He looked sick, he looked sad. And it was just heart-wrenching to see. As they carefully placed his sore body still hooked up to machines on an open bed, they simultaneously started preparing Addie to be wheeled away. My smiling little baby girl was being loaded up and right before my eyes was an exact image of how she would return to me.
By this time I was 4 months into this crazy new normal and I had nearly perfected my stoic demeanor during difficult times. While I had once stared at the nurses with what one called 'sad puppy dog eyes' during heel pricks, I could now calmly offer to hold a leg down if needed. I had begun to pride myself on my toughness. But as I stood there but a helpless witness to this scene, this poignant before and after display I was witnessing, all of my defenses crumbled down and I lost it and the sobbing began. I have never had the gift of pretty elegant crying. I go straight from stone faced to full blown ugly cry in a matter of seconds. So in the midst of this chaotic moment with nurses and transport team and everyone gathering, I stood there wearing my heart on my sleeve, the tears unable to be stopped.
By the time Addie would return hours later, the tears would have stopped and the brave face would have returned, but the drama would not have settled down. Given Max was awake and distressed by the breathing tube, they went ahead and pulled the breathing tube out. They then placed him in Al's arms for comfort which did seem like a great idea until he got distressed and completely stopped breathing and they had to whisk him out of Al's arms to start bagging him. As if we were taking turns having our breakdowns, Al now runs out of the room in tears. And really for a number of days, this pattern would persist whereby Max would get upset from the pain and collapse his airway and then subdued from the anesthetic and pain meds, he would lack the drive to open it again. It would make for a frightening and very long week before he finally seemed to be back to himself.
Addie's return was thankfully less chaotic and she seemed content to sleep off her surgery pain for a couple of days. I would watch them both during those long days and still see Addie's perfect smiles in my head and I would pray for them to come back to me quickly. Those smiley images would keep me company and give me a vision of what I was anxiously awaiting to see return. And when they did finally return 3 days after surgery, those post surgery smiles were an even sweeter gift. A promise that no matter what they would endure, they would always come back smiling and never lose their innocent joy. A promise that, to this day, they have both kept.
After our isolation drama and monumental decision that we would move forward with the big surgery to take out a kidney and put in a dialysis catheter, we had a few weeks of calm before the lurking next storm. April brought warmer weather, bigger babies, increased stability and a comforting routine to our hospital days. I had gone back to work from maternity leave and decided early on that I would not miss a day of being with them at the hospital so my days belonged to my school and my evenings to my babies. It was exhausting but perhaps the great blessing of fatigue is the lack of energy to worry, brood or contemplate. It was a stage of putting one foot in front of the other and seeing the days fly by in a blur of activity. The weekend before their surgery was Easter Weekend so it was easy to allow ourselves to become consumed in smocked bunny clothing, brand new Easter baskets, extra visitors and a copious supply of egg shaped chocolates. In fact, those few days before the surgery were among the happiest of our days in the NICU.
Between the exhaustion and the bunny festivities, I managed to prevent myself from thinking terribly much about the surgery looming on the horizon. It wasn't until late in the evening of Easter Sunday when the bunny clothes were exchanged for hospital gowns, the food was all packed away and the babies had been NPO, meaning no fluid allowed, for the next morning's surgery that I was jolted with the reality of what the next day, or days would be bringing.
I've often debated with myself which I have found more emotional and difficult to face: an emergency surgery on a sick baby or a planned surgery on a seemingly healthy baby. I have always found there to be something somewhat unbearable about handing over a stable content child knowing that things were inevitably going to get worse before they could even potentially get better. In those moments, my arms want to cling onto my child and my eyes swell up with tears as they stroll them away. It is scary and sad to send a sick baby off to the OR but for me, to send my well child away just would break my heart and defy all my logic. Therefore I faced that morning with a particularly high level of dread and angst. Although I knew in my head all the reasons why this was the pathway we needed to take and that removing the kidney and placing a large plastic tube in their bellies was the best decision, it felt very wrong when the time came to do it.
There have been only two days when both babies have gone to surgery on the same day and this was the first one. For lots of practical reasons, piggy back surgeries were the best way to approach this- it suited the surgeon and for me who was back at work and needing to take time off for their recoveries, it definitely made more sense. The fact that it would prove to be absolute torture for my poor mommy heart simply wasn't our number one concern. So early in the morning on Monday April 25 2011, they took Max back for his surgery. He was gone probably 5 hours and we sat around with my parents all taking turns holding Addie, praying and just trying to pass the time. My heart was heavy with my baby boy in the Operating room and knowing that any relief from his return would be overshadowed by the sadness of Addie taking his place. As I sat there during those hours with Addie in my arms worrying, she did something for the first time- she looked right at me and smiled. And smiled and smiled and smiled. She passed the hours looking into my eyes and smiling at me. We had caught random smiles from both of them at different times and they were both starting to flash occassional but still random grins, but these were our first social interactive back to back full fledged smiles.
And with those precious smiles, our hearts could not help but be filled with joy, despite the circumstances. The beauty of her precious smiles became stronger than the sadness of what that day entailed and our heavy hearts lifted at the priceless gift God had planned for us that morning. No doubt it was a gift that was reserved for our hour of greatest need- a joy we needed in that moment more than any time before.
I'd love to say that after those smiles that the rest of the day was a piece of cake. But while the smiles sustained and blessed us, they also made the terrible job of then handing Addie over to the surgeon that much more difficult. The few moments between Max's return and Addie being wheeled away were among the most painful I can recall. They bring Max in on a ventilator, completely out of it and his naked body covered in 6 incisions and with a seemingly giant new white tube protruding from his belly. He looked nothing like the little boy in his blue smocked bunny jon-jon the day before. He looked sick, he looked sad. And it was just heart-wrenching to see. As they carefully placed his sore body still hooked up to machines on an open bed, they simultaneously started preparing Addie to be wheeled away. My smiling little baby girl was being loaded up and right before my eyes was an exact image of how she would return to me.
By this time I was 4 months into this crazy new normal and I had nearly perfected my stoic demeanor during difficult times. While I had once stared at the nurses with what one called 'sad puppy dog eyes' during heel pricks, I could now calmly offer to hold a leg down if needed. I had begun to pride myself on my toughness. But as I stood there but a helpless witness to this scene, this poignant before and after display I was witnessing, all of my defenses crumbled down and I lost it and the sobbing began. I have never had the gift of pretty elegant crying. I go straight from stone faced to full blown ugly cry in a matter of seconds. So in the midst of this chaotic moment with nurses and transport team and everyone gathering, I stood there wearing my heart on my sleeve, the tears unable to be stopped.
By the time Addie would return hours later, the tears would have stopped and the brave face would have returned, but the drama would not have settled down. Given Max was awake and distressed by the breathing tube, they went ahead and pulled the breathing tube out. They then placed him in Al's arms for comfort which did seem like a great idea until he got distressed and completely stopped breathing and they had to whisk him out of Al's arms to start bagging him. As if we were taking turns having our breakdowns, Al now runs out of the room in tears. And really for a number of days, this pattern would persist whereby Max would get upset from the pain and collapse his airway and then subdued from the anesthetic and pain meds, he would lack the drive to open it again. It would make for a frightening and very long week before he finally seemed to be back to himself.
Addie's return was thankfully less chaotic and she seemed content to sleep off her surgery pain for a couple of days. I would watch them both during those long days and still see Addie's perfect smiles in my head and I would pray for them to come back to me quickly. Those smiley images would keep me company and give me a vision of what I was anxiously awaiting to see return. And when they did finally return 3 days after surgery, those post surgery smiles were an even sweeter gift. A promise that no matter what they would endure, they would always come back smiling and never lose their innocent joy. A promise that, to this day, they have both kept.
Saturday, May 17, 2014
Chapter 12: My Other World
There have been so many difficult decisions I have had to make as a mother. Ironically one of the decisions I had anticipated being most difficult actually proved to be incredibly easy. Before having kids, I had enjoyed theoretical debating with friends or family about whether I would want to be a working mom or a stay at home mom. I brainstormed pros and cons, sure that the choice would somehow come down to my own sense of happiness and calling. Instead, it ended up being a choice that was completely made for me. I would go back to work, despite crazy circumstances, out of total necessity. And looking at it now I am relieved the decision ended up not being mine. Partly because I would certainly be inundated with plenty of impossible decisions I would have to make but partly because I probably would have chosen wrongly. Leaving my two babies in the NICU an hour away to go act like everything was okay and be strong for 150 teenagers felt like the hardest and most ridiculous thing I had ever been asked to do. But having to be strong, having to take a break from thinking about heavy stuff to ponder plant adaptations, and having a life and role outside of this new all consuming one as their mom proved one of my greatest assets for coping. It's likely not the choice I would have made, but I can see the ways in which it sustained me and I'm grateful for my job and my one part of my old life that God enabled me to keep.
The story of how I ended up being the primary income earner actually starts when I was 16 years old. My dad worked for an oil company and we knew that a big move was on the horizon. One day we came home from school and they told us we were going out to eat and that the restaurant we would eat at would tell us where we were moving. Sitting blindfolded in the backseat I was hoping more than anything we were heading to the Outback Steakhouse. When I got there and saw it, I jumped up and down. I was excited for the adventure and I'm so grateful I had that opportunity to live there. I ended up living in Australia for 10 years, seven years longer than the rest of my family. I decided I wanted to be a teacher in Australia and had my first three years of working there. I made friends I still consider to be my closest friends there. And most importantly, I fell in love there. I started dating Alister when we were 18 and 8 years later, we were very excitedly planning a wedding.
We were both teaching at amazing private schools in Australia and content with our careers and our lives. But our happiness was cultivating big dreams in us. We wanted a house to fill with lots of babies. They had long been named and we spent our final carefree childless years to talk about anything other than the kids talking about our imaginary future children. Every trip back to America was making the cheap housing and delicious Mexican food in Houston seem more and more appealing. Al's family was in Australia and mine was in Texas and I was feeling ready to live in the same city with them again, especially as wedding talk and baby dreams were taking over my life. So we did what was both brave, and arguably slightly stupid but no doubt God ordained- we sold everything we owned in Australia and moved to Houston job less with a couple of suitcases.
Thankfully I ended up in a new teaching job pretty quickly. A friend of my mom's needed a long term Science substitute and from there I ended up with a full time position as a Biology teacher. It was a tough adjustment from teaching Psychology at my small nurturing private schools to now teaching Biology at the big public school and I certainly had days where I did not love it and terribly missed Australia. I never stopped being grateful for the job, however, as Al's quest for a job was proving much more difficult. Immigration concerns initially held him up and then bad luck getting very close interviewing for jobs but not landing the job meant that he ended up subbing full time.
Looking back at it now and knowing how it would all end up, it's easy to wonder why we thought it was a good idea to go ahead and start our family without him being in a permanent position in a school. At the time though, our desire for babies and our intense optimism that a job surely could not be far away were stronger than our fears. I knew while pregnant that as the insurance holder I would end up needing to go back after the babies came and I was okay with that. It seemed like a temporary plan and back then I felt like Superwoman so clearly I could work full time and raise twins. Piece of Cake.
Of course as the weeks passed after my C section and my inevitable return to work date loomed, I started to feel like anything but Superwoman. Staked out at my NICU post, it seemed impossible to just not show up there one day to instead go to work. But, I also understood that being a parent and loving your kids doesn't just mean holding and kissing them, it also means working to have the means to meet all their needs. I knew that my job is how we would hold the health insurance that was saving their lives. I knew that my most important job of being their mommy meant doing my other job of teaching Biology as well as I could. So, in March, about 12 weeks after they were born, I went back to work. And there have been many absences along the way, but since then I have continued to work full time and prioritize my job during crazy circumstances.
I remember that March walking into my classes and having students run to hug me and tell me how much they missed me. I remember having students that were out of control from having had a lot of subs. I remember feeling like I was drowning in paperwork and meetings. It was very stressful but in its own way it was soothing. I would drive to work so upset and worried about my babies and I would be feeling awful about not being there and my head was such an emotional and frantic place. But once I stepped in my classroom, there was simply no time to think about that. Because 30 needy teenagers were there demanding my attention. Sometimes they would distract me with their sweetness and hilariousness. I would find myself caught up in their innocent joys and dramas and be smiling away. Sometimes they would distract me with their deviancy and behavior issues. I couldn't think about anything those days but who, oh who, drew a life sized drawing of Osama Bin Laden on my lab desk and what, oh what, to do about that. Either way, through their charms or their challenges, my students forced a break from my worrying and emotional pain and I desperately needed that!
When friends were hard to keep up with and time to socialize non existant, my short work lunch times and staff meetings would become by greatest social support. My friends I saw at work were the people I told everything to and the people that would love me through the highs and lows. Going back that March I realized how much I did need that and to this day, it is still a huge support system in my day to day life.
By Friday nights, I am so exhausted I feel like it would be completely reasonable to go to sleep at 5pm. There are still days when I would rather hide under my desk and cry than keep teaching. There are students who make me want to pull out my hair. There have been days of sitting in an ICU chair with a laptop trying to analyze grades when my baby was dangerously sick. Teaching while going through these medical crises has been draining, difficult and at times, defeating. And yet I know it has also been a tremendous blessing. I know that it has been exactly what I have needed. So I'm thankful I never had a choice. I'm thankful that I never needed to finish my pro/con list and really decide what I wanted. Sometimes what we want and what we need are entirely different things. I'm grateful for the blessing of distraction, the gift of teenagers and teachers, and the very true idea that what does not kill you, will in fact make you stronger.
The story of how I ended up being the primary income earner actually starts when I was 16 years old. My dad worked for an oil company and we knew that a big move was on the horizon. One day we came home from school and they told us we were going out to eat and that the restaurant we would eat at would tell us where we were moving. Sitting blindfolded in the backseat I was hoping more than anything we were heading to the Outback Steakhouse. When I got there and saw it, I jumped up and down. I was excited for the adventure and I'm so grateful I had that opportunity to live there. I ended up living in Australia for 10 years, seven years longer than the rest of my family. I decided I wanted to be a teacher in Australia and had my first three years of working there. I made friends I still consider to be my closest friends there. And most importantly, I fell in love there. I started dating Alister when we were 18 and 8 years later, we were very excitedly planning a wedding.
We were both teaching at amazing private schools in Australia and content with our careers and our lives. But our happiness was cultivating big dreams in us. We wanted a house to fill with lots of babies. They had long been named and we spent our final carefree childless years to talk about anything other than the kids talking about our imaginary future children. Every trip back to America was making the cheap housing and delicious Mexican food in Houston seem more and more appealing. Al's family was in Australia and mine was in Texas and I was feeling ready to live in the same city with them again, especially as wedding talk and baby dreams were taking over my life. So we did what was both brave, and arguably slightly stupid but no doubt God ordained- we sold everything we owned in Australia and moved to Houston job less with a couple of suitcases.
Thankfully I ended up in a new teaching job pretty quickly. A friend of my mom's needed a long term Science substitute and from there I ended up with a full time position as a Biology teacher. It was a tough adjustment from teaching Psychology at my small nurturing private schools to now teaching Biology at the big public school and I certainly had days where I did not love it and terribly missed Australia. I never stopped being grateful for the job, however, as Al's quest for a job was proving much more difficult. Immigration concerns initially held him up and then bad luck getting very close interviewing for jobs but not landing the job meant that he ended up subbing full time.
Looking back at it now and knowing how it would all end up, it's easy to wonder why we thought it was a good idea to go ahead and start our family without him being in a permanent position in a school. At the time though, our desire for babies and our intense optimism that a job surely could not be far away were stronger than our fears. I knew while pregnant that as the insurance holder I would end up needing to go back after the babies came and I was okay with that. It seemed like a temporary plan and back then I felt like Superwoman so clearly I could work full time and raise twins. Piece of Cake.
Of course as the weeks passed after my C section and my inevitable return to work date loomed, I started to feel like anything but Superwoman. Staked out at my NICU post, it seemed impossible to just not show up there one day to instead go to work. But, I also understood that being a parent and loving your kids doesn't just mean holding and kissing them, it also means working to have the means to meet all their needs. I knew that my job is how we would hold the health insurance that was saving their lives. I knew that my most important job of being their mommy meant doing my other job of teaching Biology as well as I could. So, in March, about 12 weeks after they were born, I went back to work. And there have been many absences along the way, but since then I have continued to work full time and prioritize my job during crazy circumstances.
I remember that March walking into my classes and having students run to hug me and tell me how much they missed me. I remember having students that were out of control from having had a lot of subs. I remember feeling like I was drowning in paperwork and meetings. It was very stressful but in its own way it was soothing. I would drive to work so upset and worried about my babies and I would be feeling awful about not being there and my head was such an emotional and frantic place. But once I stepped in my classroom, there was simply no time to think about that. Because 30 needy teenagers were there demanding my attention. Sometimes they would distract me with their sweetness and hilariousness. I would find myself caught up in their innocent joys and dramas and be smiling away. Sometimes they would distract me with their deviancy and behavior issues. I couldn't think about anything those days but who, oh who, drew a life sized drawing of Osama Bin Laden on my lab desk and what, oh what, to do about that. Either way, through their charms or their challenges, my students forced a break from my worrying and emotional pain and I desperately needed that!
When friends were hard to keep up with and time to socialize non existant, my short work lunch times and staff meetings would become by greatest social support. My friends I saw at work were the people I told everything to and the people that would love me through the highs and lows. Going back that March I realized how much I did need that and to this day, it is still a huge support system in my day to day life.
By Friday nights, I am so exhausted I feel like it would be completely reasonable to go to sleep at 5pm. There are still days when I would rather hide under my desk and cry than keep teaching. There are students who make me want to pull out my hair. There have been days of sitting in an ICU chair with a laptop trying to analyze grades when my baby was dangerously sick. Teaching while going through these medical crises has been draining, difficult and at times, defeating. And yet I know it has also been a tremendous blessing. I know that it has been exactly what I have needed. So I'm thankful I never had a choice. I'm thankful that I never needed to finish my pro/con list and really decide what I wanted. Sometimes what we want and what we need are entirely different things. I'm grateful for the blessing of distraction, the gift of teenagers and teachers, and the very true idea that what does not kill you, will in fact make you stronger.
Sunday, May 11, 2014
Chapter 11: Drinking Pennies
I've always found it remarkable how quickly one can adjust to an entirely new set of circumstances and start to establish routines and a level of comfort. Hospital life that had once felt so daunting, emotional and stressful had within a couple of months become oddly comfortable and enjoyable. I was still on maternity leave so the lack of other stress and pressure in my life allowed me to immerse myself in Max and Addie's new world and to face the new challenges with an single minded devotion. I drove to the hospital with a sense of purpose, I fed and held my babies and savored each moment, I researched and made sense of everything the doctors told me, I befriended the nurses and made Max and Addie's little corner of the hospital look as home like as possible with their personalized blankets, painted wooden name signs and pictures and toys. Walking into their hospital room stopped feeling medical, it just felt natural. It was where I got to love on my babies and therefore I drove to the hospital with happy anticipation, excited to be where my heart was living.
Medically things had settled into a routine as well by late February. Addie no longer needed her feeding tube so she was drinking her bottles and acting like a completely typical baby. She needed two long IV infusions every day to replace the proteins that her kidneys were frantically dumping into her pee but if you did not see the IV line attached to the central line in her chest you would have no clue she was anything other than healthy and happy. Max was far less stable but even his Max attacks had become so frequent that it no longer felt like a crisis but rather merely an hourly event. Then I fed my baby, then we bagged my baby back to life because he stopped breathing, then I read to my baby and then it was lunch time... this was just how it was. And I was okay with that. I was remarkably happy even during this time. Most of the initial shock and pain of their diagnosis has worn off and the future hurdles seemed so far away that living in the moment, truly taking things one day at a day was very manageable and enjoyable.
In fact, I had so settled into my NICU life that I managed to be caught completely off guard when reminders did come that in fact my children were very sick and that they were in reality living in an Intensive Care Unit and that their precious adorable lives were indeed at risk. My happy routine came to a jolt in mid March when routine bloodwork revealed that Addie had virtually no white blood cells, meaning her immune system was essentially depleted. This began a panic fueled spiral of events. Initially they feared that this must be because she was currently sick and searched for a source of infection. When that quest yielded no answers, they decided that although not currently sick, she was almost certainly at imminent risk of getting sick as she lacked the ability to fight anything off. If I was unclear of how serious the situation was, the doctors harped on the phrase 'life threatening' and ensured that I quickly matched their level of concern and fear.
To try and minimize the likelihood of Addie catching any sort of infection from the other babies around her, she was moved into an isolation room. Essentially the solitary confinement of the NICU, she and Max were in separate room across a hallway. In order to be in her room, we had to wear plastic gowns and masks. Gone were the welcomed distractions of a busy pod full of other babies and families. Gone were the relaxing hours spent holding her or Max while playing with the other one. All the efforts to make our little hospital nook feel like home and we now found ourselves in a sterile white walled closet sweating under plastic layers worrying about when she would start getting sick and what would happen. The comfortable routine was so abruptly replaced with the sobering reality of living in an ICU.
Thankfully though, Addie's time in isolation ended up being only cautionary and she never became sick. And her release and freedom came from a very unexpected source. While most of the doctors were busy managing her white blood cell count and preventing complications from it, one neonatalogist (preemie specialist) started researching WHY Addie had such a low white blood cell count. She stumbled upon a very treatable answer. She proposed that one of the things that Addie's kidneys were dumping out was her copper binding proteins. This resulted in her having very low copper levels (for some reason this seemed to happen to her but not Max). Copper is responsible for stimulating white blood cell production in the bone marrow. Without copper, Addie's body was not continuing to make white blood cells and thus at constant risk of developing the life threatening infection we were all worrying about.
The solution was simple. Drink Pennies. We had to pour Copper in liquid form into Addie's nightly bottle. It make the milk smell like a roll of pennies. I felt so bad for my sweet baby as I held her and poured the penny milk into her and watched her scrunched up annoyed face that her beloved milk had been ruined! But, as soon as the Copper milk came into existence, Addie started making white blood cells again and she got released from her solitary confinement. I had never been so excited to be back in the normal NICU room full of babies, pink blankets and windows! It felt like paradise! And no one used the phrase 'life threatening'- well at least they used it way less! Who would have thought that drinking pennies could save the day?
Our little more than a week in Isolation was a turning point though in the course of treatment for Max and Addie. While we had been continuing with the plan of replacing what their kidneys peed out, the addition of this new copper dilemma and more medication led us to the point where we decided their kidneys were just causing too many risks and issues and it was time to move towards removing their kidneys and starting them on dialysis. It had become clear that despite the moments of finding comfort in this hospital life, that it was truly no way for them to live. For me, our time in isolation was the wake up call I needed that it was time to start looking at the more aggressive but more home based treatment alternatives.
The decision to move towards dialysis appropriately brought us back to a small conference room with our old friend Dr Doom and Gloom. I came to this meeting more prepared, dressed appropriately and well rested, and with a beloved NICU nurse sitting next to us for moral support. I was determined that it would be a better experience than our last conference room confrontation. We left the meeting with a plan. We would take their first kidney out on April 24th and place a dialysis catheter in their abdomen. Then we would wait a month or two and let the new catheter heal before we removed the second kidney and started them on dialysis. Our goal would be to have dialysis running smoothly and them both home before the end of that summer.
Although there is some inherent comfort that comes from feeling like you have a plan, we nevertheless left the meeting with a fair amount of anxiety. One of the characteristically melancholy things that Dr Doom and Gloom told us was that there are a lot of risks for babies requiring dialysis. He told us that 10 years ago, the likelihood of a baby on dialysis making it to their first birthday would be about 50%. While he say that things have improved in the last 10 years, I know Al and I both left with that 50% echoing in our heads. Two babies on dialysis. Please let them both get to celebrate their first birthday.
I'm glad we didn't know then how many close calls the next year would include. Although, I wish we had known then as well as we know now just how many miracles the next year would include.
Medically things had settled into a routine as well by late February. Addie no longer needed her feeding tube so she was drinking her bottles and acting like a completely typical baby. She needed two long IV infusions every day to replace the proteins that her kidneys were frantically dumping into her pee but if you did not see the IV line attached to the central line in her chest you would have no clue she was anything other than healthy and happy. Max was far less stable but even his Max attacks had become so frequent that it no longer felt like a crisis but rather merely an hourly event. Then I fed my baby, then we bagged my baby back to life because he stopped breathing, then I read to my baby and then it was lunch time... this was just how it was. And I was okay with that. I was remarkably happy even during this time. Most of the initial shock and pain of their diagnosis has worn off and the future hurdles seemed so far away that living in the moment, truly taking things one day at a day was very manageable and enjoyable.
In fact, I had so settled into my NICU life that I managed to be caught completely off guard when reminders did come that in fact my children were very sick and that they were in reality living in an Intensive Care Unit and that their precious adorable lives were indeed at risk. My happy routine came to a jolt in mid March when routine bloodwork revealed that Addie had virtually no white blood cells, meaning her immune system was essentially depleted. This began a panic fueled spiral of events. Initially they feared that this must be because she was currently sick and searched for a source of infection. When that quest yielded no answers, they decided that although not currently sick, she was almost certainly at imminent risk of getting sick as she lacked the ability to fight anything off. If I was unclear of how serious the situation was, the doctors harped on the phrase 'life threatening' and ensured that I quickly matched their level of concern and fear.
To try and minimize the likelihood of Addie catching any sort of infection from the other babies around her, she was moved into an isolation room. Essentially the solitary confinement of the NICU, she and Max were in separate room across a hallway. In order to be in her room, we had to wear plastic gowns and masks. Gone were the welcomed distractions of a busy pod full of other babies and families. Gone were the relaxing hours spent holding her or Max while playing with the other one. All the efforts to make our little hospital nook feel like home and we now found ourselves in a sterile white walled closet sweating under plastic layers worrying about when she would start getting sick and what would happen. The comfortable routine was so abruptly replaced with the sobering reality of living in an ICU.
Thankfully though, Addie's time in isolation ended up being only cautionary and she never became sick. And her release and freedom came from a very unexpected source. While most of the doctors were busy managing her white blood cell count and preventing complications from it, one neonatalogist (preemie specialist) started researching WHY Addie had such a low white blood cell count. She stumbled upon a very treatable answer. She proposed that one of the things that Addie's kidneys were dumping out was her copper binding proteins. This resulted in her having very low copper levels (for some reason this seemed to happen to her but not Max). Copper is responsible for stimulating white blood cell production in the bone marrow. Without copper, Addie's body was not continuing to make white blood cells and thus at constant risk of developing the life threatening infection we were all worrying about.
The solution was simple. Drink Pennies. We had to pour Copper in liquid form into Addie's nightly bottle. It make the milk smell like a roll of pennies. I felt so bad for my sweet baby as I held her and poured the penny milk into her and watched her scrunched up annoyed face that her beloved milk had been ruined! But, as soon as the Copper milk came into existence, Addie started making white blood cells again and she got released from her solitary confinement. I had never been so excited to be back in the normal NICU room full of babies, pink blankets and windows! It felt like paradise! And no one used the phrase 'life threatening'- well at least they used it way less! Who would have thought that drinking pennies could save the day?
Our little more than a week in Isolation was a turning point though in the course of treatment for Max and Addie. While we had been continuing with the plan of replacing what their kidneys peed out, the addition of this new copper dilemma and more medication led us to the point where we decided their kidneys were just causing too many risks and issues and it was time to move towards removing their kidneys and starting them on dialysis. It had become clear that despite the moments of finding comfort in this hospital life, that it was truly no way for them to live. For me, our time in isolation was the wake up call I needed that it was time to start looking at the more aggressive but more home based treatment alternatives.
The decision to move towards dialysis appropriately brought us back to a small conference room with our old friend Dr Doom and Gloom. I came to this meeting more prepared, dressed appropriately and well rested, and with a beloved NICU nurse sitting next to us for moral support. I was determined that it would be a better experience than our last conference room confrontation. We left the meeting with a plan. We would take their first kidney out on April 24th and place a dialysis catheter in their abdomen. Then we would wait a month or two and let the new catheter heal before we removed the second kidney and started them on dialysis. Our goal would be to have dialysis running smoothly and them both home before the end of that summer.
Although there is some inherent comfort that comes from feeling like you have a plan, we nevertheless left the meeting with a fair amount of anxiety. One of the characteristically melancholy things that Dr Doom and Gloom told us was that there are a lot of risks for babies requiring dialysis. He told us that 10 years ago, the likelihood of a baby on dialysis making it to their first birthday would be about 50%. While he say that things have improved in the last 10 years, I know Al and I both left with that 50% echoing in our heads. Two babies on dialysis. Please let them both get to celebrate their first birthday.
I'm glad we didn't know then how many close calls the next year would include. Although, I wish we had known then as well as we know now just how many miracles the next year would include.
Monday, May 5, 2014
Chapter 10: Maximillan the Chameleon
One of the most intriguing aspects of kidney disease or disorders was that my children could be so sick and quite realistically battling life or death problems and yet look and seem perfectly healthy and normal! They were in the NICU with all these tiny babies hooked up to intense breathing support and looking so sick and fragile and then they were there big and round and pink gulping down their bottles and wearing precious designer baby clothes their Nana bought them. The central lines giving them life saving medications were now buried under their soft little onesies so any outward signs of illness almost seemed gone. Our friends and family would come visit and they would remark how healthy they seemed. And for a few minutes they would be lulled into thinking nothing was very wrong. Then right around when they started to relax with this whole sick baby thing and think maybe it wasn't that stressful, Max would give them the scare of their lives and they would leave feeling all kinds of shaken up and convinced once more that the babies did in fact need to be in the hospital after all.
These moments had nothing at all to do with their kidney condition though. It had to do with Max's other big issues which had seemed so important earlier on when we were frantically searching for answers to explain his respiratory issues. Once we accidently stumbled on the kidney condition and Addie got so spectacularly sick, our focus diverted to these new issues and Max's mysteries took a place more in the background. Our lack of focus on them did nothing, however, to dampen the severity of them. So as the dust began to settle at our new hospital, we started to once again attend to Max's scary respiratory issues.
During one of our first few days at the new hospital, one of our favorite nurses coined a new phrase for Max's issues- she would call them a 'Max Attack' and the name immediately stuck and even the doctors would refer to them that way in rounds. A Max Attack was a much cuter term than the appropriate medical term which would be apnea leading to bradycardia or a lapse in breathing that would cause dramatic heart rate drops and even more dramatic color changes. What would happen is that Max would get mad. Max is still very sensory sensitive and any sort of sensory overload would set him off and living in a loud well lit crowded NICU meant that he seemed unavoidably triggered many times a day. Sometimes even having to poop or move would upset him. He would start to cry. His face would turn beet red. Then as he opened his mouth bigger and bigger, it would seem to get stuck there. He would look like a flaming red statue, all of his limbs incredibly stiff. Then as he held that for more seconds without oxygen, the red would transition to a bright purple, then a blueberry blue. As he continued not breathing, the blue would turn paler and then duskier, a gray blue before he would finally pass out and the stiffness would collapse and he would be sheet white. It was truly quite a display. Another wonderful nurse nicknamed him Maximillan the Chameleon for his capacity to be so many different colors.
Max would start this process initially many times a day, probably once an hour. If you could calm him down before he got too worked up, you could often prevent the full experience. Al and I became experts at spotting the turning red phase and trying to hold and console him back to calm before any trace of the blue came on. Often we were successful. Other times he would truly turn blue but we could get him to calm and catch his breath before he would pass out. But there were times when we just could not get him to breathe again and he would go all the way to passed out white and then the nurses would have to 'bag' him meaning they put an ambu bag which looks like a mask with a balloon attached and they make a tight seal and start pumping the balloon which is attached to an oxygen tank. It is basically sending high pressure intense oxygen at him to try and trigger him to take a breath himself. Sometimes the nurses would get him breathing in just 5-10 pumps. Other times it would be a minute or more of pushing the air in before he would respond and breathe. In those early months it was 8-10 times a day that he would need to be bagged.
In early March, we finally had to have more answers as to what was going on because he was now past his due date and still doing it so it no longer looked like a typical preemie behavior pattern. He went under anesthesia and they were able to do a scope or put a camera down his throat. They diagnosed him with 'tracheomalacia' which means he had a floppy airway. When he would cry, his throat would close on itself. They were able to get images with his windpipe completely shut during the scope. And as long as he stayed upset and crying, it would stay shut. If we could calm him down, he would relax and be able to breathe again. At the time, it was something of an enigma why passing out did not immediately open his airway. Generally once someone is passed out, that tightness should relax and they should breathe again. Max would pass out and just continue not to breathe, which we know think was caused by his brain not receiving signals correctly. In those cases, the only thing that we could do to bring him back was use the bag to deliver enough pressure that we could actually pop his shut airway back open again. There would have been more invasive things that could have been done at the hospital had that not worked but very thankfully he responded to being bagged every time.
Watching Max go through that was so heartbreaking and terrifying initially. While it never became easy or pleasant, I will admit that we did become somewhat desensitized to it, and we needed to. It happened so frequently you just could not emotionally sustain being completely traumatized that many times a day! Plus the more times it would happen and he would be okay, the more reassured we felt that he was in good hands and that there was no real need to panic. In fact, within a couple of months, I think visitors were as scared by Al and I's lack of panic as they were by Max's color change display. They would stare at us with huge eyes and wild fear as we would calmly pat his back while he was this intense purple statue. I know I have many friends who could still tell you about the day they saw Max turn blue for the first time as a memorable life event of their own!! Max attacks would persist for a long time, although they did gradually become less frequent. By the time he came home from the NICU, they were occuring a few times a week and we bagged him for the last time when he was around 14 months old.
I am so grateful that we had these amazing nurses who helped us see them as just a Max attack, just one of those things he does, who taught us how to be calm and help him get calm (and how to rescue him if it came to that) and who even allowed us to have a smile and chuckle with endearing names like Maximillan the Chameleon. They had this way of turning the terrifying into the manageable and helping us see truly crazy intense situations as just part of life. I don't know how we could have handled all the Max attacks without that!
These moments had nothing at all to do with their kidney condition though. It had to do with Max's other big issues which had seemed so important earlier on when we were frantically searching for answers to explain his respiratory issues. Once we accidently stumbled on the kidney condition and Addie got so spectacularly sick, our focus diverted to these new issues and Max's mysteries took a place more in the background. Our lack of focus on them did nothing, however, to dampen the severity of them. So as the dust began to settle at our new hospital, we started to once again attend to Max's scary respiratory issues.
During one of our first few days at the new hospital, one of our favorite nurses coined a new phrase for Max's issues- she would call them a 'Max Attack' and the name immediately stuck and even the doctors would refer to them that way in rounds. A Max Attack was a much cuter term than the appropriate medical term which would be apnea leading to bradycardia or a lapse in breathing that would cause dramatic heart rate drops and even more dramatic color changes. What would happen is that Max would get mad. Max is still very sensory sensitive and any sort of sensory overload would set him off and living in a loud well lit crowded NICU meant that he seemed unavoidably triggered many times a day. Sometimes even having to poop or move would upset him. He would start to cry. His face would turn beet red. Then as he opened his mouth bigger and bigger, it would seem to get stuck there. He would look like a flaming red statue, all of his limbs incredibly stiff. Then as he held that for more seconds without oxygen, the red would transition to a bright purple, then a blueberry blue. As he continued not breathing, the blue would turn paler and then duskier, a gray blue before he would finally pass out and the stiffness would collapse and he would be sheet white. It was truly quite a display. Another wonderful nurse nicknamed him Maximillan the Chameleon for his capacity to be so many different colors.
Max would start this process initially many times a day, probably once an hour. If you could calm him down before he got too worked up, you could often prevent the full experience. Al and I became experts at spotting the turning red phase and trying to hold and console him back to calm before any trace of the blue came on. Often we were successful. Other times he would truly turn blue but we could get him to calm and catch his breath before he would pass out. But there were times when we just could not get him to breathe again and he would go all the way to passed out white and then the nurses would have to 'bag' him meaning they put an ambu bag which looks like a mask with a balloon attached and they make a tight seal and start pumping the balloon which is attached to an oxygen tank. It is basically sending high pressure intense oxygen at him to try and trigger him to take a breath himself. Sometimes the nurses would get him breathing in just 5-10 pumps. Other times it would be a minute or more of pushing the air in before he would respond and breathe. In those early months it was 8-10 times a day that he would need to be bagged.
In early March, we finally had to have more answers as to what was going on because he was now past his due date and still doing it so it no longer looked like a typical preemie behavior pattern. He went under anesthesia and they were able to do a scope or put a camera down his throat. They diagnosed him with 'tracheomalacia' which means he had a floppy airway. When he would cry, his throat would close on itself. They were able to get images with his windpipe completely shut during the scope. And as long as he stayed upset and crying, it would stay shut. If we could calm him down, he would relax and be able to breathe again. At the time, it was something of an enigma why passing out did not immediately open his airway. Generally once someone is passed out, that tightness should relax and they should breathe again. Max would pass out and just continue not to breathe, which we know think was caused by his brain not receiving signals correctly. In those cases, the only thing that we could do to bring him back was use the bag to deliver enough pressure that we could actually pop his shut airway back open again. There would have been more invasive things that could have been done at the hospital had that not worked but very thankfully he responded to being bagged every time.
Watching Max go through that was so heartbreaking and terrifying initially. While it never became easy or pleasant, I will admit that we did become somewhat desensitized to it, and we needed to. It happened so frequently you just could not emotionally sustain being completely traumatized that many times a day! Plus the more times it would happen and he would be okay, the more reassured we felt that he was in good hands and that there was no real need to panic. In fact, within a couple of months, I think visitors were as scared by Al and I's lack of panic as they were by Max's color change display. They would stare at us with huge eyes and wild fear as we would calmly pat his back while he was this intense purple statue. I know I have many friends who could still tell you about the day they saw Max turn blue for the first time as a memorable life event of their own!! Max attacks would persist for a long time, although they did gradually become less frequent. By the time he came home from the NICU, they were occuring a few times a week and we bagged him for the last time when he was around 14 months old.
I am so grateful that we had these amazing nurses who helped us see them as just a Max attack, just one of those things he does, who taught us how to be calm and help him get calm (and how to rescue him if it came to that) and who even allowed us to have a smile and chuckle with endearing names like Maximillan the Chameleon. They had this way of turning the terrifying into the manageable and helping us see truly crazy intense situations as just part of life. I don't know how we could have handled all the Max attacks without that!
Thursday, May 1, 2014
I Praise you God Because and I Praise you God Even Though...
I praise you God because you have worked mighty miracles in our lives
I praise you God because you have spared the lives of my fragile children
I praise you God because you have answered our prayers for healing
I praise you God because there is joy every day and hope along the way
But I also praise you God even though there are still trials
I praise you God even though my children still face developmental and medical challenges
I praise you God even though at times I feel weary and tired
I praise you God even though life is so far from what I had once dreamed
I praise you God that you blessed me with two babies who were the desire of my heart
And I praise you God even though they were born so sick
I praise you God because we survived this
And I praise you God even though we had to endure this
I praise you God that you healed Addie beyond our expectations
And I praise you God even though we have not seen that same healing in Max
I praise you God that Addie is so healthy and vibrant
And I praise you God although I still long to hear her speak
I praise you God every time I see Addie run
And I praise you God even though they tell me Max never will
I praise you God that Max has has the most joyful smile
And I praise you God even when we cannot see the smile and know he is in pain
I praise you God that every day I laugh and feel joy in my life
And I praise you God even on the days I feel sadness and loss in my life
I praise you God because you blessed us with amazing families and friends
And I praise you God even though I often feel lonely walking this road
I praise you God because you answer my prayers
And I praise you God even when the answer is hard to hear
I praise you God because you are mighty to heal
And I praise you God even though sometimes you do not
I praise you God no matter what, in every high and in every low
I praise you God not merely because of the miracles
I praise you God simply because you are God.
I praise you God because life is definitely hard but you are truly good.
I praise you God Because, and I praise you God Even Though and I praise you God Always.
I praise you God because you have spared the lives of my fragile children
I praise you God because you have answered our prayers for healing
I praise you God because there is joy every day and hope along the way
But I also praise you God even though there are still trials
I praise you God even though my children still face developmental and medical challenges
I praise you God even though at times I feel weary and tired
I praise you God even though life is so far from what I had once dreamed
I praise you God that you blessed me with two babies who were the desire of my heart
And I praise you God even though they were born so sick
I praise you God because we survived this
And I praise you God even though we had to endure this
I praise you God that you healed Addie beyond our expectations
And I praise you God even though we have not seen that same healing in Max
I praise you God that Addie is so healthy and vibrant
And I praise you God although I still long to hear her speak
I praise you God every time I see Addie run
And I praise you God even though they tell me Max never will
I praise you God that Max has has the most joyful smile
And I praise you God even when we cannot see the smile and know he is in pain
I praise you God that every day I laugh and feel joy in my life
And I praise you God even on the days I feel sadness and loss in my life
I praise you God because you blessed us with amazing families and friends
And I praise you God even though I often feel lonely walking this road
I praise you God because you answer my prayers
And I praise you God even when the answer is hard to hear
I praise you God because you are mighty to heal
And I praise you God even though sometimes you do not
I praise you God no matter what, in every high and in every low
I praise you God not merely because of the miracles
I praise you God simply because you are God.
I praise you God because life is definitely hard but you are truly good.
I praise you God Because, and I praise you God Even Though and I praise you God Always.
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