A fellow mom in a Facebook group I'm a part of recently posted about new regulations by the American Association of Pediatric that state that a child is less likely to have SIDS if they stay in the parents' room for the first 6 months of life. The new mom sounded a bit freaked out as she had recently transitioned her child from a bassinet in her bedroom to the crib in the child's bedroom. She wanted to know what other moms thought about this new finding. I hesitated before responding because sometimes I think my view of raising children isn't for everyone. My view can be scary. I talk about life and death as casual things. Why? Because they're a part of my daily life. As a mom of a child with a terminal diagnosis, life and death consume my thoughts. So when I see posts like this, my mind races with things I want to say:
1. We have a nurse in our home anywhere from 15-20 hours a day to help care for my son while my husband and I work outside the home. I had seen this study published by the AAP earlier that day so I mentioned it to my nurse. Her response? She laughed. "Good Lord!" she said. "There's always a new rule!"
I had to agree with her. The powers-that-be are constantly changing the rules. I understand that this is all in an effort to be safer, but this has to be taken with a grain of salt. This same study told me I'm not supposed to let my infant snooze on the couch. So what I am to do doing during the day for the first 6 months of life? Get nothing done because I can't, according to the study, put my child in their own crib either? Instead, every time my child takes a nap, I have to lay down too? Part of me is conjuring up some fantasy where that could actually happen but then reality (and my older toddler) laughs in my face! We should never sacrifice the safety of our children but at what point are we sacrificing too much ourselves to abide by all these rules?
2. What is SIDS anyway? By definition, no one knows! It is an unexplained phenomenon. I am no scientist but I'm guessing that SIDS often results when babies are predisposed to a genetic mutation, one not found through an autopsy. How many of those SIDS babies had genetic testing like Whole Exome Sequencing? Again, I'm guessing not many. One, because it wasn't brought up or two, because of the cost. While I whole-heartedly believe that parents can and should take precautions to prevent SIDS, for smart parents, even those guidelines don't always work. If your child is going to die, your child is going to die and sometimes there's nothing you can do about it. Sounds harsh but, as I said earlier, that's my reality.
3. You can't live your life in fear so stop trying to conjure up scary situations. Your baby is fine.
Monday, February 26, 2018
The Diagnosis
Everyone keeps saying how satisfying it must be to have an official diagnosis. "At least now you know," they say. But when the diagnosis brings your worse nightmare, I'm not sure that's the case. With our diagnosis, I now know for sure that my son, my baby boy, won't live the long, healthy life I had hoped for. Knowing this is torture.
Saturday, May 2, 2015
Nervous About Post Hospital Life
After 33 days, my son is set to come home from the hospital in 3 days. During his stay, he had to get a tracheotomy and feeding tube put in. But in 3 days, he comes HOME! I can't wait. I can't wait to have my family all under one roof. It will be so nice to sit and watch TV, put my daughter to bed, see my son sleeping in his crib. It will be wonderful!
Except I'm terrified. And angry. And sad.
I'm terrified that there's going to be a situation where I am responsible for knowing the proper steps to save my son's life. Me. An English teacher. Somehow I'm supposed to be qualified enough to know how to work through life and death problems, assess the situation, plan a course of action: suction, oxygen, bag. I mean, I know that I've suctioned dozens of times, changed the trach, bagged him all while in the hospital, but to do it at home alone has me terrified.
I'm also terrified to have a nurse in my home. Don't get me wrong. I'm very thankful to have nursing care for my son so that I can do things like work outside the home and get a full night's sleep, but the idea of having someone walking around my house in the middle of the night is scary. They'll be able to see everything: how I eat popcorn like a savage, how I sometimes slide on letting me daughter take a bath, how I'm not always a pleasant person to be around. They'll see it all. Not only that but I'm also having mixed emotions about needing someone else to care for my son, MY son. I'm his mother. I shouldn't need anyone else to watch over him. It should be me doing it all. The idea that I can't do it alone has me feeling angry and sad.
And don't even get me started on what our life will look like because I have no clue. At this point, I'm convinced that we're going to turn into hermits because the sheer amount of equipment I need to leave the house with my son includes another adult and enough equipment to assemble the 6 million dollar man. I keep picturing different scenarios, trying to figure out how it'll all play out. For example, if we go to a friend's house for a barbecue, what happens if my child falls asleep and needs to be put on the ventilator? It's going to happen. And it's going to be a show for all the kids and parents to see. They'll ask a billion questions, they'll sit there and marvel at my husband and I, ooing and ahhing over what great parents we are. But we're not. We'll just be doing what we have to do. And it'll piss me off that they'll be looking at me with pity, or awe, or asking questions, or not asking questions and judging, all of them judging. And then I'll feel bad for feeling angry so I'll feel sad. Sad that I can't just be one of them... carefree and enjoying a drink on the deck. Or perhaps instead, my husband and I will want to go to the zoo. But how do we do that when our battery life for the vent is only 5 hours? How do we get on the train at the zoo with all of our equipment? Strollers are stored at the back of the trolley so we won't have access to our equipment. But we always need access to our equipment. Should we not ride the trolley? My daughter will be so bummed. Or maybe we just ask the powers that be to allow us access to our stroller. And then we'll be the people that everyone stares at. And the onslaught of emotions will ravage me again. Or further still, what if my husband and I want to go out on a wine stroll on a Saturday but the nurse is only there at nights on weekends? Should we seriously make one of my parents or my in-laws responsible for making life or death decisions for my son's care? I don't even want that responsibility! How can I ask one of them to do it? There is so much unknown. And it has me terrified. And angry. And sad.
I guess only time will tell how it all plays out. My type A personality is just going to have to learn how to be a type Q.
Except I'm terrified. And angry. And sad.
I'm terrified that there's going to be a situation where I am responsible for knowing the proper steps to save my son's life. Me. An English teacher. Somehow I'm supposed to be qualified enough to know how to work through life and death problems, assess the situation, plan a course of action: suction, oxygen, bag. I mean, I know that I've suctioned dozens of times, changed the trach, bagged him all while in the hospital, but to do it at home alone has me terrified.
I'm also terrified to have a nurse in my home. Don't get me wrong. I'm very thankful to have nursing care for my son so that I can do things like work outside the home and get a full night's sleep, but the idea of having someone walking around my house in the middle of the night is scary. They'll be able to see everything: how I eat popcorn like a savage, how I sometimes slide on letting me daughter take a bath, how I'm not always a pleasant person to be around. They'll see it all. Not only that but I'm also having mixed emotions about needing someone else to care for my son, MY son. I'm his mother. I shouldn't need anyone else to watch over him. It should be me doing it all. The idea that I can't do it alone has me feeling angry and sad.
And don't even get me started on what our life will look like because I have no clue. At this point, I'm convinced that we're going to turn into hermits because the sheer amount of equipment I need to leave the house with my son includes another adult and enough equipment to assemble the 6 million dollar man. I keep picturing different scenarios, trying to figure out how it'll all play out. For example, if we go to a friend's house for a barbecue, what happens if my child falls asleep and needs to be put on the ventilator? It's going to happen. And it's going to be a show for all the kids and parents to see. They'll ask a billion questions, they'll sit there and marvel at my husband and I, ooing and ahhing over what great parents we are. But we're not. We'll just be doing what we have to do. And it'll piss me off that they'll be looking at me with pity, or awe, or asking questions, or not asking questions and judging, all of them judging. And then I'll feel bad for feeling angry so I'll feel sad. Sad that I can't just be one of them... carefree and enjoying a drink on the deck. Or perhaps instead, my husband and I will want to go to the zoo. But how do we do that when our battery life for the vent is only 5 hours? How do we get on the train at the zoo with all of our equipment? Strollers are stored at the back of the trolley so we won't have access to our equipment. But we always need access to our equipment. Should we not ride the trolley? My daughter will be so bummed. Or maybe we just ask the powers that be to allow us access to our stroller. And then we'll be the people that everyone stares at. And the onslaught of emotions will ravage me again. Or further still, what if my husband and I want to go out on a wine stroll on a Saturday but the nurse is only there at nights on weekends? Should we seriously make one of my parents or my in-laws responsible for making life or death decisions for my son's care? I don't even want that responsibility! How can I ask one of them to do it? There is so much unknown. And it has me terrified. And angry. And sad.
I guess only time will tell how it all plays out. My type A personality is just going to have to learn how to be a type Q.
Sunday, April 26, 2015
Taking Health for Granted
When my daughter was born, I loved going to well-baby check-ups. I couldn't wait to find out what percentile my daughter was, as if being in the 90% for height somehow directly translated to her being the smartest, most special baby in the world. I was smug. I'd walk out of the appointment and call my other mom-friends. We'd share stats and talk possibilities. It wasn't until I had my son that I realized that I had taken it all for granted.
With my son, I realize now that health is so precious, something to be cherished. Before I knew this, I remember hopping jovially into his 4 month well-baby visit. I don't remember exactly what I was thinking but I remember it wasn't about his health. The idea that he was anything less than perfect was not even a possibility. And then a second later, it was. Instead of skipping gleefully away and calling friends, I had to call a neurologist to set up an appointment. My baby boy wasn't developing on a normal scale.
The moment you realize this is the moment you want to delete all your friends from Facebook and Instagram and every other form of social media. You don't want to look at their perfectly happy babies; you don't want to see those beautiful cherubs achieving their milestones. It's a terrible way to be but it just is. Every "look at my baby roll over" post would send me into a spiral of negativity. It should have been me posting those happy milestones, not me posting another picture of my baby smiling...because that's all he could do.
I try not be angry with other moms. They simply don't know any better. If the shoe were on the other foot, I know I would be tooting my son's horn, proclaiming his amazingness for all to see. Heck, I was one of those moms once long ago. I broadcast my daughter's rolling and walking and wanted the world to see how proud I was. And I should've been; she was and still is amazing! But I have learned to realize that my son is too. I don't know another baby that has been poked and prodded like he has and yet, he comes out smiling. I will be emotionally drained, balling my eyes out, and look over to see him grinning away at me. In the middle of hospital stays and after blood draws, he will laugh. His attitude and positive outlook on life make me more proud than if he were to roll over right now. With him, I've come to realize that it's not about any sort of timetable or calendar; it's about feeling blessed with what you have and not taking it all for granted.
Now I belong to a special club. I belong to a group of parents that have had to realize that life is truly a gift, that the easiness of it all can be ripped away in an instant. I am a proud member of this group because these parents and their children inspire me every day to be the best mom I can be and to truly be thankful for all the blessings in my life.
Tuesday, April 21, 2015
We Almost Lost Him
I was awoken to the sound of my son's cry. Being only 3 weeks old I assumed he was hungry. But when I went to check on him, he was perfectly still and quiet. I was a little surprised that he had gone back to sleep so quickly and figured I would just get him up anyway since I was sure the quiet wouldn't last. When I lifted him out of the crib, everything fell back - his arms, his legs, his head. Something was wrong. I quickly laid his body on the changing pad and unbuttoned his sleeper, a surefire way to arouse his angry side. But there was nothing, no change. He simply lay there, peacefully unmoving. I inspected him. His color was good; when I put my ear on his chest, I could feel his chest moving. He was breathing. I took a wet wipe, another infallible trick to wake him, but still there was nothing. No movement, no change. I shook him but still nothing. I ran out to my husband, asleep with my too-early-of-a-riser daughter on the couch, and told him my concern. He, too, tried to wake up our son but, again, nothing. There was just nothing.
I'm not sure we even communicated our intentions but we both took off. We gathered up the kids, threw them in the car, and raced off to the hospital only 3 miles away. It was 5am on a Saturday so the streets were ours. We hit a pothole in the road and I heard the sweetest sound. He cried. From the back seat, he cried. It was the greatest relief I had ever felt.
As we rushed into the ER, the nurses immediately took him, placed him on a gurney, and got to work. We did an x-ray, talked with the doctor, but one nurse, in particular, discovered that he had low oxygen by pressing on his fingernails. They immediately got him some oxygen and his color soon began getting better. All the nurses took to him so I chatted, finally feeling somewhat calm, with everyone. We got the news that we were being transferred to their sister hospital because it was more equipped to handle situations if anything happened to get worse. So off we went. It was my first ambulance ride. Me, strapped onto a gurney, holding my baby in my arms while simultaneously holding a blow-by, a Styrofoam cup aiming oxygen at his little 3 week old face. My husband was following behind in our car.
When we got to the ER at the other hospital, everything went wrong. They first discovered that his body temperature was way too cold. It suddenly became chaotic as they ripped off his sleeper and brought over a warmer. Having just had a baby 3 weeks prior, my hormones were a bit out of control. I remember this doctor trying to talk to me, ask me questions. I honestly tried to focus, be the helpful mother. But as more and more people started swarming, I broke down. I just lost it. I looked over to see one of the paramedics, a young girl, looking at me with a mixture of curiosity and sympathy.
They put us into a sort of holding area where my son was monitored as we waited for a room in the Pediatric ICU to open up. It was then that they discovered that my son's CO2 was exponentially higher than it should have been. They had to intubate.
I thought I had fallen apart by this point but the wave of emotion that hit me was like no other. Soon people were coming out of the woodwork to watch my son be intubated. Seeing as this was a teaching hospital, apparently intubating a 3 week old baby was a interesting learning experience. While the staff prepped him, I sat in the bathroom down the hall and pumped. And cried. There was nothing else I could do.
When I came out, my husband watched the procedure taking place from afar. I couldn't. I paced the hallway, sobbing uncontrollably, my postpartum emotions running away with me. People kept asking me if I was ok and I would just wave them off. What else was I supposed to do, say? It was then that a nurse grabbed me around the shoulders and paced with me. She didn't say much other than to tell me that it was going to be ok. But she paced with me, hugging me tightly. I wish I could remember her face or that I had gotten her name. Whoever this woman is, I am forever grateful for her kindness.
That night was the worst of my life. As we sat in the Pediatric ICU, we watched as my son's oxygen level dropped time and time again. Each time they had to take him of the vent and bag him. Each time, I felt like we were going to lose him. Even the ICU doctor stayed the night because my boy was so unstable. I can't even describe the terror I felt. You can only understand if you've experienced it yourself. And I pray you haven't.
Over the course of the next few days, we ran test after test, talked to various specialists but everything came back as negative. In the end, the doctors chalked the whole episode up to a viral infection, an infection that his 3 week old body wasn't strong enough to fight without help. Slowly but surely, the virus ran its course and slowly but surely, my boy became more stable.
I look back at this time and I still consider it the most awful of my life. Since then, we've lived through other diagnoses, a house flood that carried away even my car, many life changes. But that night, the night we almost lost him, can never be forgotten.
I'm not sure we even communicated our intentions but we both took off. We gathered up the kids, threw them in the car, and raced off to the hospital only 3 miles away. It was 5am on a Saturday so the streets were ours. We hit a pothole in the road and I heard the sweetest sound. He cried. From the back seat, he cried. It was the greatest relief I had ever felt.
As we rushed into the ER, the nurses immediately took him, placed him on a gurney, and got to work. We did an x-ray, talked with the doctor, but one nurse, in particular, discovered that he had low oxygen by pressing on his fingernails. They immediately got him some oxygen and his color soon began getting better. All the nurses took to him so I chatted, finally feeling somewhat calm, with everyone. We got the news that we were being transferred to their sister hospital because it was more equipped to handle situations if anything happened to get worse. So off we went. It was my first ambulance ride. Me, strapped onto a gurney, holding my baby in my arms while simultaneously holding a blow-by, a Styrofoam cup aiming oxygen at his little 3 week old face. My husband was following behind in our car.
When we got to the ER at the other hospital, everything went wrong. They first discovered that his body temperature was way too cold. It suddenly became chaotic as they ripped off his sleeper and brought over a warmer. Having just had a baby 3 weeks prior, my hormones were a bit out of control. I remember this doctor trying to talk to me, ask me questions. I honestly tried to focus, be the helpful mother. But as more and more people started swarming, I broke down. I just lost it. I looked over to see one of the paramedics, a young girl, looking at me with a mixture of curiosity and sympathy.
They put us into a sort of holding area where my son was monitored as we waited for a room in the Pediatric ICU to open up. It was then that they discovered that my son's CO2 was exponentially higher than it should have been. They had to intubate.
I thought I had fallen apart by this point but the wave of emotion that hit me was like no other. Soon people were coming out of the woodwork to watch my son be intubated. Seeing as this was a teaching hospital, apparently intubating a 3 week old baby was a interesting learning experience. While the staff prepped him, I sat in the bathroom down the hall and pumped. And cried. There was nothing else I could do.
When I came out, my husband watched the procedure taking place from afar. I couldn't. I paced the hallway, sobbing uncontrollably, my postpartum emotions running away with me. People kept asking me if I was ok and I would just wave them off. What else was I supposed to do, say? It was then that a nurse grabbed me around the shoulders and paced with me. She didn't say much other than to tell me that it was going to be ok. But she paced with me, hugging me tightly. I wish I could remember her face or that I had gotten her name. Whoever this woman is, I am forever grateful for her kindness.
That night was the worst of my life. As we sat in the Pediatric ICU, we watched as my son's oxygen level dropped time and time again. Each time they had to take him of the vent and bag him. Each time, I felt like we were going to lose him. Even the ICU doctor stayed the night because my boy was so unstable. I can't even describe the terror I felt. You can only understand if you've experienced it yourself. And I pray you haven't.
Over the course of the next few days, we ran test after test, talked to various specialists but everything came back as negative. In the end, the doctors chalked the whole episode up to a viral infection, an infection that his 3 week old body wasn't strong enough to fight without help. Slowly but surely, the virus ran its course and slowly but surely, my boy became more stable.
I look back at this time and I still consider it the most awful of my life. Since then, we've lived through other diagnoses, a house flood that carried away even my car, many life changes. But that night, the night we almost lost him, can never be forgotten.
Tuesday, April 7, 2015
Happy? Birth
My son was born via cesarean because of poor positioning in the womb but I wasn't nervous. I had had such a difficult time recovering after the traditional birth of my daughter that I welcomed it. I checked into the hospital at 6am and then poof... my son was born 2 1/2 hours later. He was a perfect baby boy.
The only part that made me sad about a c-section was that I wasn't sure I would have the same bonding experience with my son that I had been given with my daughter. But sure enough, after he was checked out by the nurses, he was placed on my chest for me to hold. It was perfection.
But that quickly changed. In the recovery room, the nurse noticed that my son's temperature ran low. I was told that this was a sign of diabetes and his blood sugar had to be tested. I immediately lost it because my family had a history of juvenile diabetes and late-onset diabetes. When the test results came back, everything showed up as normal. The scare turned out to be just that...a scare. Unfortunately, his scare continued. For the rest of our time in the hospital, he had issues with low temperature. Even at his first well-baby visit post hospital stay and his two week check-up, the issue continued. We bought a heater for his room and thought that as he grew and as he got stronger, the issue wouldn't be an issue any more.
In between all these scares, my baby boy was so wonderful. He breastfed easily, much easier than my daughter had, and was a king of cuddling. He LOVED to be held! I couldn't wait to watch him grow, to take he and my daughter on adventures, to hear his voice. He was the most perfect little boy and I was so proud to me his mama.
The only part that made me sad about a c-section was that I wasn't sure I would have the same bonding experience with my son that I had been given with my daughter. But sure enough, after he was checked out by the nurses, he was placed on my chest for me to hold. It was perfection.
But that quickly changed. In the recovery room, the nurse noticed that my son's temperature ran low. I was told that this was a sign of diabetes and his blood sugar had to be tested. I immediately lost it because my family had a history of juvenile diabetes and late-onset diabetes. When the test results came back, everything showed up as normal. The scare turned out to be just that...a scare. Unfortunately, his scare continued. For the rest of our time in the hospital, he had issues with low temperature. Even at his first well-baby visit post hospital stay and his two week check-up, the issue continued. We bought a heater for his room and thought that as he grew and as he got stronger, the issue wouldn't be an issue any more.
In between all these scares, my baby boy was so wonderful. He breastfed easily, much easier than my daughter had, and was a king of cuddling. He LOVED to be held! I couldn't wait to watch him grow, to take he and my daughter on adventures, to hear his voice. He was the most perfect little boy and I was so proud to me his mama.
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