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.
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