As I begin this post, it is 1:50 in the morning and I’m having trouble sleeping. That’s why I’m up. I spent about an hour and a half in bed, just awake, brain on, with no signs of slowing down.
It was actually a night much like this one that got me writing this blog in the first place. I was just lying there thinking… and thinking… and thinking… about Miles, about the future, about the past, about the other kids, about whether or not a dog and a frog could actually truly be friends… (Hey, the mind goes where the mind goes…
So here I am again, only this night is a little different. It is the eve of Miles’ final hypospadias repair surgery. We are supposed to be at the hospital at 7:40 in the morning. I was told that Miles wasn’t supposed to have any food after midnight, which is standard — we’ve been down this road before — but they also said no liquid after two hours before, and this includes his liquid medications.
Miles is on three different liquid medications, which he takes a total of eight times per day: 3 in the morning, 2 at 2pm, and 3 at night. (We go through medication syringes like tissues in winter…) Before January, Miles was only on one medication, which he took at 7am and 7pm. His last surgery was two months prior to the super-increase of medication, and at that time we didn’t really have much of a problem. So I’ve been worried that I will sleep through the alarm I set for myself and miss the dose and what will happen if he has to go into surgery without having taken his medication?
TMI ALERT – The paragraph below contains TMI. Feel free to skip.
The weather today was gorgeous. We spent a good deal of time outside. I let Miles play in the sandbox in a diaper and t-shirt. Perhaps this was a mistake because when I went to change his diaper before dinner I noticed some red swelling… This is not something you want to see on a person the night before they go in for a surgery, especially when the surgery is to take place in the same location as the swelling. I began freaking out a little bit. I took his temperature (normal). I put him in a warm bath with baking soda. Before getting him out we rinsed him off with the shower hose. I took his temperature (normal). I slathered polysporin on the affected area. I fed him dinner. I took his temperature (normal). Before bed I changed his (practically dry) diaper again. It looked better but was still swollen. I slathered more polysporin on and asked Ian if he thought we should call the urologist’s office and he said that we didn’t want them to cancel outright. He made the very valid point that, even if they cancel the surgery, they are the exact people we want looking to see if this is something to be more concerned about than I am sitting up typing this at 2:03am.
So I’m awake. Awake and thinking and nervous and tired but awake. And some neighbors just arrived home so the dog is trying to freak out in his sleep, which is kind of hilarious. So that’s something. Right?
Maybe I will get him up to leave and his swelling would have magically disappeared. I don’t want to cancel, but I don’t want to take unnecessary risks either.
Now those neighbors are just talking loudly outside the window and smoking. Gross.
I know I shouldn’t just wait until 5:40 when I can give medicine. I should chance it and take the 3 hours of sleep if they come. I’ll let you know how it goes.
All right. 2:11. See you folks later. To help us both, adorable pictures of adorable creatures sleeping:
Last week I wrote at great length, though not exhaustively, about the challenges we face as a family and gave you a run-down of what Miles has been through in his first four years. I got a lot of powerful and positive feedback, which I appreciate so much. Some people even stepped forward and shared some of their stories with me, which I think is just fantastic. If you ever want to share with me, or contribute as a guest blogger, feel free to reach out.
This week is to be a little more upbeat. You’re welcome. 🙂
I wrote last week about how hard it was to make friends. We had recently moved away from my favorite place I’ve ever lived, near family and surrounded by a community of close friends. On top of that, I wasn’t working and cash flow was at an all time low, so going out and meeting people was just not something I was excited about. Plus, I was having all these issues and feelings and worry and strife, so I didn’t want to lay that all out there for every new person to have to deal with. Nothing says “You really don’t want to be my friend” more than being a needy and emotionally frail person-with-too-many-problems.
I did see people occasionally – we had “Birth to Three” (or early intervention) therapists come to the house a few times a week, and they were nice and stuff, and I really liked a couple of them very much, but they were professionals and, you know, boundaries and stuff.
At one point I tried making friends with a woman down the street who had recently moved in. She had a child a year or so younger than Verity and another child about a year older than Duncan and Miles. I am not a diagnostic professional, but the son was non-verbal and often in a stroller he was too big for and did a lot of yelling. I saw an opportunity to relate to another mother who might be going through some of the same issues I had been facing. I shared with her some of what I had learned while we were waiting for the bus one day and soon she became everything I was afraid I’d become. She needed me for everything you could possibly think of from “could you find me a lawyer” to “I’m bleeding, please come over and be with my kids.”
It turned out Verity was suddenly old enough to walk herself home from the bus stop. Also, I stopped answering the phone. It was too much. They have since moved.
When Miles turned 3, he aged out of the Birth to Three program, which meant that he was eligible for the public preschool program. I honestly didn’t know how much this would heal me.
The program is a short-day (2.5 hour) program which is “reverse-mainstream.” Miles was referred to the program by his Birth to Three service coordinator. The teachers came to meet him, he was evaluated, and we had a big meeting about his eligibility and services he would receive. Duncan, as his twin, was automatically accepted into the school year program as a “model peer.” Miles took the bus to school in July after he turned 3 and then, because Duncan was not eligible for transportation, I began driving both of them in the fall.
Through the preschool program, I met parents of other kids who, though not quite like mine, had their own stuff going on. I got to bring the boys to birthday parties where I could see how they interact with the other children in the class. The children treated Miles as though he was everyone’s baby brother. Guiding him with an arm around his back, protecting him, and including him in whatever they were doing. Usually, Miles wasn’t quite at the same level as the other children, but they never seemed to mind, happily playing near him and asking him questions.
I met other parents at drop-off and pick-up. Though our stories weren’t the same, we shared some of the same pain of lost expectations and the realities of living in the Realm of the Unknown.
I met a mom whose child has some of the same kinds of seizures Miles has. She invited me to a monthly Epilepsy support group, so we started attending monthly. We carpool and laugh and rail about this and that, and then we laugh some more. I cannot say enough good things about the group itself — just having someone who relates, even just a little, to what you’re experiencing, or someone who has new ideas, or who has tried things you haven’t even considered, is like taking a weight off. Side note: the Epilepsy Foundation is pretty great. If you or someone you know has epilepsy, I highly recommend them as a resource.
I met a mom who has become one of our most vocal cheerleaders. I think she could write the book on advocating, and she always lets me know when she finds something cool (and cheap or free!) that the kids would like. Yesterday, on her recommendation, we took the children to a museum which has dedicated Accessibility Days once per month. On those days, families of children with disabilities are admitted for free. We took all three kids and they had a fantastic time! Miles tooled around in his wheelchair and showed me all kinds of tricks he’s learning; Duncan loved each new place more than the last, until he found his dream exhibit – the energy lab, where he played with water power and got soaking wet. Although she was kind of big for the museum, Verity had a great time anyway, trying stuff out, climbing where she could climb, and making friends with preschoolers. This mom also took Duncan on Thursday while I went to the endocrinologist with Miles.
Headed off for more building materials
Building stuff. What’s that guy doing back there?
I met a mom whose daughter is, I’m pretty sure, going to marry Duncan when they get older. It’d be okay with me because I love them – both mom and child. When she has to leave school early for some reason, Duncan cries. They always want to play together outside after school and then, inevitably, one of them tries to climb into the other’s car to go off together.
I met a mom who is a special education attorney. I have yet to ask her about anything that has surprised her or that she didn’t have an answer for. And just when I think I’ve asked for too much free advice, she approaches me with follow-up questions and offers of assistance.
The teaching and therapeutic staff at the preschool is just wonderful. I have never felt like they were on anybody’s side but Miles’. The few times I’ve had to make special requests, they listened well and did everything they could to meet those requests.
So although I don’t have my amazing family right next door, or my “village” of friends and neighbors we had to move away from, I am finally building a community around myself and my family. I have missed that; it has truly been too long.
NOTE: Thank you so much for reading! I want you to know that, though I strive to publish every week, I will be taking this week off. School is out for summer, there’s a week before camp starts, and Miles is having surgery this week. Sometimes I just have to be realistic.
If you know me, which you probably do because you’re reading this, you know that it is not always easy for me to talk about things that are difficult, particularly in an open forum or for any length of time. I put humor into it, or I slap on a happy ending, which may not fit into the narrative I have constructed. I use humor because I value it so much – a life without laughter is not a life in which I want to partake. I slap on a happy ending because, frankly, I always try to look on the bright side. In some instances, however, I realize that this may actually be a disservice to myself and to those who are trying to understand what it is my family and I are going through.
With that in mind, I am going to attempt to write about what life is like for us in a way that is a little more representative of how it actually is, without the silver lining.
DISCLAIMER: As of the writing of this blog, it is my understanding that the terms for “special needs” and “neurologically typical” children are the most accepted terms to use. It is not meant to imply that a neurologically typical, or “typical” child is not unique or special in their own right, but simply that they developed more or less along a predictable and established (or “typical”) timeline and that they are about on par with their peers. Additionally, a “typical” child likely does not have medical needs and specialists beyond those of their peers. My personal definition of a child with “special needs” is: one who needs extra intervention on a regular basis just to navigate their home/the world/their school/their life.
A woman I was talking to once stated to me (sitting there with Miles, in his wheelchair,) that she didn’t like the term “special needs” because “don’t all children have their own special needs?” I was momentarily speechless, but I eventually said “Sure, all children are unique, but to me the term ‘special needs’ means something else.” I remember thinking “This is hard enough – do you have to take my adjective away?”
(A note of caution: adjectives are descriptors we use to help someone understand what we are talking about. We must be wary of the weaponized adjective: The Label. I try hard not to use labels because they imply a bias. As Ian has said: we need to use the words to help tell a story–not in place of a story. It can be a fine line, but one we must strive to navigate with as much grace as Philippe Petit on the high wire.)
Even in the optimal situations, being a parent is difficult. Children are not trainable like puppies and they never behave as you might want or need them to… Make a list of things you need to accomplish during nap time and it’ll all but guarantee that there will be no naps. Your child only eats hot dogs? Buy the big case at Costco and he will insist that he doesn’t like them any more and only wants to eat macaroni and cheese. Need to be on time? She flushed her shoe down the toilet. They become preteens and then teenagers and grow moody and secretive and then they leave home and you have to hope and trust you prepared them well enough.
Right now I have a typical preteen and a typical three-year-old. Each of them is able to make me want to tear out my hair on a daily basis. If I had a dollar for every time I repeated something I just said ten seconds before, I would be a rich lady indeed.
And if that’s not enough for a parent, there are activities, sports, music, after school clubs, and everything. And everything costs money! Did you know children have to eat every single day? Not just the one time, either! They devour snacks like fiends and then, if you’re lucky, they eat food at mealtimes too. And if you want to put on a show and pretend they’re hungry dinosaurs eating tiny broccoli trees, they may even get an occasional vegetable in. And you have to cook it all, even if you know they won’t eat it, because they might actually eat that one time and if there isn’t enough they’ll let you know exactly how hunnnnngryyyyyy they are.
And you love them more than you ever believed it was possible to love anything ever. It even hurts sometimes.
Add into that mix a third child. This child is sweet and funny and wonderful, just like the other two are, but the frustrations he brings are different. They involve appointments, meetings, advocation, equipment, uncertainties, and worry.
We see two therapists a week and he has a bunch of specialists. Some months are busier than others. June/July is going to be particularly busy because we are going back to a developmental pediatrician and because most of the specialists see us on the same 6-month rotation. I have to find ways to occupy the boys – because Duncan always has to come too, and sometimes we have to bring Verity as well – through all the waiting otherwise they start going through all the drawers in the doctor’s offices. Oh! And parking! I have to try to find a handicap spot so that I can take the wheelchair out and get Miles into it without much hassle. Sometimes I can’t find a handicap-designated spot and the building where we go for most of our appointments has a parking lot designed for compact cars so I usually end up parking our van like a jerk just to get the wheelchair out and hope that nobody blocks my ability to get it back in.
Miles has an ophthalmologist because his eyes took a long time to mature and it’s hard to tell if he has problems with vision. His next appointment is in July.
He had an infant nutritionist because he needed to be on special high-calorie formula so he would gain weight, and who helped us navigate some high-calorie first foods.
He has an ENT and audiologist because he doesn’t reliably respond to his name or to sounds and it was feared he had hearing loss. He ended up having several behavioral hearing tests before he had to be sedated and have brain analytics done. His brain responds, but he doesn’t always, and we don’t know why.
He has a urologist because he had a urinary tract infection when he was just a few weeks old AND because he had to have a surgical bilateral inguinal hernia repair at four months old AND because he has had to have three surgeries on his penis due to hypospadias. He has had to have testosterone injections prior to each hypospadia repair, except for the one next week, which will hopefully be his last.
He has a neurologist because when he was one year old he had a febrile tonic-clonic (or grand mal) seizure which lasted over 25 minutes and which caused him to “code” in the ER. I watched as they performed CPR, applied paddles, and injected his heart with epinephrine. As it was happening I started trying to figure out how to tell Ian that I watched our son die.
He has a geneticist because, once he came out of that horrifying scene, the doctors wanted to try to figure out what the heck happened and to find an explanation for his phenotype.
He has an endocrinologist because, during that seizure his blood sugar was low and he was consistently unable to get his little body on the growth chart. (Except his head. That was always 50th percentile.) We will see her on Thursday.
He has a gastroenterologist because, at my sister-in-law Llama’s diligent suggestion and my advocation, he was screened for celiac disease and lo and behold, we found it.
He has an orthopedist because he turned two and wasn’t walking. He is seen every six months still. We go back in two weeks and I am excited to see if anything changes now that Miles can cross a room on foot.
He has an epileptologist because about nine months ago he started suddenly losing focus in his eyes and dropping his head, sometimes banging it. Hard. or he would just stare off for several seconds at a time. In January we had an overnight electroencephalogram (EEG) and it showed he was having hundreds of seizures, both absence and atonic every single day. He was diagnosed with Epilepsy.
He has a developmental pediatrician, who is helping us try to figure out the best way to meet him where he is and help him learn.
We had a hematologist because Miles had chronic anemia, requiring re-admission to the NICU, two transfusions during that time, and then another transfusion right before the hernia surgery mentioned above. Also because his white blood cell count was elevated and remained elevated for several months.
We had a cardiologist because he was born with two holes in his heart. Thankfully, they appear to have closed and we have been discharged from cardiology.
He has weekly speech therapy, both in school and as outpatient, to try and find ways to communicate with him.
He has an hour of physical therapy at school every week and a half hour every other week as outpatient.
He has occupational therapy weekly at school and every other week as outpatient to try to gain dexterity and improve functionality in his fine motor skills.
He has a soft helmet he wears because, despite ten doses of medication every day, he still has dozens of atonic (drop) seizures every day. Mostly, the helmet keeps him safe, but now that it’s summer, golly he heats up good.
When he outgrew a stroller, we got him a wheelchair so that I don’t have to carry his 33 pound body everywhere. We chose a wheelchair instead of a special stroller because we wanted him to learn to move around in it on his own. He’s getting pretty good.
When he outgrew his crib, we got nervous that he was going to fall out, so I put him in a pack and play to sleep. He *did* fall out of that. Onto his head. We were able to get a hospital bed with netting to keep him safe at night. It is entirely white, giving it an impersonal and sterile feeling. I change the white sheets a lot because I can see everything on those things.
Camping out int he bed
Everyone loves the bed
As he continues to grow, I can’t help but think: if we are lucky, he will grow up. He will likely not live an independent life. He will grow out of the cute small child phase. He will hit puberty and may be very confused about what is happening. Will he learn to shave himself? Will he ever hold a job? Will he talk to me? Can we have a conversation? When he was a baby in the NICU I consoled myself by dreaming of the future time when I could tell him the story of his harrowing newborn period and he could take some pride in being born small but becoming the soccer star / computer programmer / whatever the heck he wants to be.
On holidays or even regular days Ian and I often discuss the possibility that we are unlucky. How many more holidays do we get? Is it possible to capture the moment of hearing his giggle, of seeing his wonder, of smelling his wee head, so that we can relive it when we don’t have it any more? As I write, he is asleep in his bed. I can see him in the video monitor sprawled out on the mattress trying to keep cool on this hot night. I want to go in and scoop him up and hold him close to me as he sleeps, although I know it would be unbearably hot. Moments like these I just yearn to pause time. I ache.
Special needs for us means all of this stuff. It means I can’t work a typical job because I have a fantastic balancing act to perform on a daily basis. Starting friendships, a super-power of mine, has become incredibly difficult because I find I can no longer relate to others as well, or rather I don’t know that they can relate to me. Touching upon all of the aspects of caring for Miles, as I have here, seems daunting to think of all at once, but it’s always there, all at once. Every day. Parenting without special needs is a difficult job. Everyone has their story, their past, their pain. This is a peek into ours.
The NICU at Massachusetts General Hospital is amazing. We were set up in a private room. Miles had his own incubator bed thing and the nurses wheeled in a little newborn crib thing for Duncan. (They wrote a sign for it and everything. It said “My brother Dunkin’s bed.” We made no complaint about the spelling.)
In the beginning he was on heavy antibiotics and was visited by X-ray technicians every few hours and by surgeons lurking in the shadows waiting to be called into action should the antibiotics fail. If required, they would go in and cut out a section of dead colon. He hoped fiercely that they would not be required. We willed the surgeons away with our stares like a person wills away vampires with a cross.
While Miles worked to get better, we visited whenever we could find someone to stay at home with Verity. My parents stayed in a dorm room in the boarding house for a couple of weeks and we would pack – because of course we were moving to another boarding house – and whenever we could, we would take Duncan and go to the NICU. Ian’s mom would also come when she could, after work, during the whole of her only vacation, and on the weekends to help. We couldn’t hold Miles, but we could try to arrange his wires and we could change his diaper and put it aside for weighing. I would pump as often as possible so that when he was able to eat he would have a smorgasbord awaiting him. Well, there was only one thing on the menu, but it would be the perfect food. We had a little cushioned bench by the window, next to the sink where we could wash out the pump parts. We also stored labels and containers for the milk in the cupboards. It often seemed that Duncan would sense when I was about to pump because he would wake up demanding to be fed.
At one point, listening to Miles’ heart, they noticed a murmur. An ultrasound showed he had a hole between the two atrial quadrants in his heart, called an ASD. This is usual in new babies, and generally closes quickly. In addition, he had another defect in his heart, called VSD, which is a hole between the two ventrical quadrants. This is not as common, but his was small so they just listened and recommended follow-ups with a pediatric cardiologist.
They had to put him under anesthesia so they could install a central line down by his groin. This would keep them from having to change his IV so often. You see, an IV can only hold out for so long before the vein gives out and they have to prick him again. The first line didn’t take, so they had to try again in the other side. He still has little white scars on the insides of his thighs as a reminder of his first anesthesia and how sick he was.
Honestly, there wasn’t much we could do for Miles at first, except listen to the updates from the doctors and nurses, will the surgeons away, and listen to the beeps, alarms, and other ambient NICU noises. (I used to joke that they should include a CD of NICU noise with the discharge materials so that the babies would feel more at home after transitioning.) Although we might have felt useless, we still felt the need to be there every day, so we would go at all hours of the day and night – whenever we could get away – and just hang out near him, in the room, Duncan often sleeping as well.
We brought along an iPad for watching Downton Abbey and an occasional movie while we sat in the room with our new babies nearby. Sometimes we would get hungry – I was allowed a meal as a nursing mother, but at the best times we would stroll down to the cafeteria to partake of the amazing salad bar down there. (Seriously, if you ever have occasion to be at MGH: salad bar. So many options. So many wonderful greens, purples, reds, oranges, seeds, dressings, proteins… so good. And, of course, at the end of the salad bar were the desserts. Because why not, right?) We weren’t allowed to eat in the room with Miles so we ate in the little family lobby that was always showing one of three things: an infomercial for the Insanity workout videos, an infomercial for some cleaning product, or, when we were super lucky, episodes of Wipeout.
For some reason, Wipeout was the perfect relief from the stressors of NICU life. Let me describe Wipeout to you, in case you are uninitiated: People of all levels of athletic ability run through a ridiculous and near-impossible obstacle course, mostly made of inflatables, where they get very muddy and wet and fall down a lot. The falls are spectacular and it’s dumb and it was perfect.
Meanwhile, Miles slept. A lot. His little body fought hard. I don’t know if I have ever fought so hard for anything in my life. And he was just over three pounds and a few weeks old. And at a few weeks old, he was still behind, having been forced to deal with a bad placenta and umbilical cord in utero. In essence, I had two babies who were conceived together, who shared a uterus, and who were born on the same day, but one was a full-term baby and one was a preemie.
He fought so hard the surgeons stopped having to come around every few hours – the antibiotics were – slowly – doing their job. After a week of waiting we were finally allowed to hold him. I was so scared, he was still so fragile, but when I finally got him on my chest I never wanted to go anywhere or do anything else ever again. He was so small, frail, and sick, but he was also just so perfect.
I got to go first
Daddy got to go second
There were times when holding him wasn’t so blissful, however, as it was still another nine days until he was able to even attempt eating, so when he was hungry and snuggling so close to food, he would get quite upset. His little cry was so small and desperate and hungry and heartbreaking. He was receiving IV nutrients, but that’s not the same as filling your belly.
When we finally did get to feed him for the first time in the NICU, it was only 3 cc’s. There was no bottle – they put it into a nipple only and it took a real long time to get it all into his little body – he just didn’t know how to do it. But he was able to slowly increase the amount over time. We would have to hold him up right next to our ear to burp him, because otherwise we couldn’t hear his tiny little burps. His burps, like many other things, have improved a great deal since then.
Somewhere in there, Ian and I managed to move us into a new apartment on campus… This was something we could not have done without the incredible community that we lived in. The Operations crew would finish whatever they were working on or just come by for a box or two when they were on our side of campus. Local students, colleagues, family, and friends would pop by and take care of whatever odd job was needed at the time. People came out of the woodwork and showed up with food. It was amazing and we will never forget it.
Finally, he started looking good enough to transfer to a special care nursery. We had a tour of the facility at MGH, but were also told that, if Emerson had space, we could transfer back there. We told them that was what we wanted, if it was possible. They began making arrangements. They took his central line out. Silently rejoicing, Ian and I left the hospital for the night.
The next day we visited again, ready for the discussion about transferring him back near home. When we walked in, we saw that he had a new IV.. We were told to sit down and the doctor came in to talk with us. “The nurse noticed he wasn’t behaving like himself,” he said. “He has developed a fever and we need to run some tests to determine the cause.” We sat up straighter, listening harder, as though our will could fix it, or figure it out, or at least cause the doctor to suddenly understand what was causing the fever.
They inserted a catheter to collect a urine sample. “We are hoping it’s a urinary tract infection (UTI).” They took more blood, which showed elevated white blood cells (a sign of infection) and anemia (which had persisted from the beginning and would continue to persist, but that’s for another post, I think). They needed to send blood and urine to culture as well, which can take days to develop. Additionally, they said they needed to check his spinal fluid. This meant doing a lumbar puncture, or “spinal tap,” which is where they insert a tiny needle in between the vertebrae in the lower back to collect a sample of fluid and the drummer dies.
Protip: Do not ever agree to stay in the room at a teaching hospital where a doctor-in-training is about to do his or her first delicate procedure on your offspring. Especially with a curtain closed where you can only listen to the continued encouragements of “no, you’re doing great” and “sometimes that happens,” punctuated by the confused weak cries of your tiny baby. Elect instead to partake of the aforementioned salad bar. Or Wipeout in the lounge. Or walk the streets of Boston looking for the cookie truck. Or go pluck out your eyelashes one by one… Or anything really… If you happen to be a doctor in training or a teaching doctor – Ask the parents to leave. Tell them it’s hospital policy, even if it’s not, because I assure you, you do not want them to listen, even if things are going well.
Miles’ spinal tap went well, but as you may have guessed, it didn’t seem like it was going well from our side of the curtain. From behind the curtain it seemed like it was going to eleven. And although that’s what you may want in an amplifier, it’s not good for spinal stuff in a three pound baby.
While we waited for the test results to come back, Miles was given a new broad-scope antibiotic. We learned that it was, indeed, a UTI, which brought in another specialist, a pediatric urologist, who also talked with us briefly about Miles’ hypospadias, which would eventually need surgery or surgeries.
They couldn’t re-install the central line, so they had to use an IV, which they kept having to move because his little veins couldn’t take it. One day we walked in to an IV on his forehead. That was alarming, but apparently there was a really great vein up there. Fortunately, it was the last vein they had to use, and after another week or so he was well and able to be transferred back to Emerson where he could practice eating and growing until he was healthy and plump enough to come home. With relief, we filled out all the paperwork and cuddled wee Miles – I was even able to nurse him, hold him and Duncan together, and even try nursing them together! Things were finally looking up.
This week I have started writing at least half a dozen posts and none of them were right. I haven’t been quite in the zone for going into the details of the NICU. Then, this weekend, I had the opportunity to spend a lot of time with just Miles, and I realized that HE is what I want to write about. I want you to know Miles, who he is now, not just the sum of his history and what we as parents have gone through. So here we go: all that I can think of to tell you about this wonderful, sweet, amazing little guy. I will include some of the medical stuff, but will avoid going deep into it because although it’s all a part of his life, it is not all of who he is.
Miles is funny. Laughter is all it takes to get him to laugh. He wants to be in on the joke. The laughter you prompt him with might be fake, aimed at the singular goal of getting him going, but once he starts going you will find yourself in the most fantastic feedback loop. He responds amazingly well to his bedtime ticklefest and sometimes will laugh when we have no idea why. He particularly enjoys spotting Elmo and Cookie Monster in unexpected places and delights in the picture of Louis Armstrong at Uncle Bill’s house.
Miles is sweet. Apropos of nothing he will climb up on me, stick his thumb in his mouth, and snuggle up. He will find something the dog likes to chew on (whether an approved chew toy or not) and follow the dog (“Sprocket”), arm outstretched, trying to give the object to him. Sprocket is quite patient with him, sometimes taking it and chewing, sometimes taking it and putting it down, and sometimes just turning his head and walking away. Miles, determined to share, will follow Sprocket to his next destination and keep trying. He has also taken to feeding me his snacks, which is just delightful. He gets a look of concentration on his face, aims for the mouth (my mouth) and goes for it.
Miles is determined. Whether he’s trying to feed the dog or reach an object, he will find a way. We often say he has Go-Go-Gadget Arms. For example, at the dinner table, we may wonder where our forks have disappeared to. Miles will be sitting there grinning, trying to use all the forks his little hand can hold to pick up his food. He has discovered a way to move his high chair so he can get to whatever he is lacking.
Miles is able. He may not use words to communicate, but he can tell you with clarity what he wants, whether he likes something or not, and where he wants to go. If it is too far to walk on foot, he will use his knees to walk or if he’s in his wheelchair, will propel his wheels by himself. When I take him out of the bathtub, he reeeeeeeaches his leg back, trying to hook the side of the tub with his foot. When we went to a birthday party at a play gym, he made it absolutely clear that under no circumstances was he to play anywhere but the ball pit.
I think I like this…
HOLY COW I LOVE THIS!
Miles is curious. He will take the thing. He will lift it, turn it, mouth it, try to open it, bang it on the other thing, pull it out, push it in, or stack it on top. He loves connecting duplos and figuring out how the train tracks go together. He enjoys the sounds that dumping out the bin makes and may even put some of the things back in, until something else piques his interest. Much to Duncan’s chagrin, he wants to see exactly what is going on with whatever Duncan is doing. This often results in a crash of some sort, and two incredibly different sets of emotions.
Miles is happy. He will hum as he plays. Even when he has an atonic (“drop”) seizure he will go right back to playing and vocalizing as soon as he recovers, which is usually rather quick. Sometimes it seems he gets more upset when we comfort him after a particularly nasty bonk because he wants to get back to playing.
Miles is amicable. He will go on several errands, in and out of the car, his wheelchair, a cart, whatever, and – as long as he’s well-fed – be happy just being. In the car, he doesn’t complain when I want to listen to NPR and he likes all the same music as I do. He loves music. In his rare times of distress, a little bouncing and singing goes an awful long way.
Miles EATS. His celiac disease may restrict him to a gluten-free diet, but otherwise, this kid will basically eat anything.
Miles is ambitious. He will crawl up the IKEA shelves if they don’t have toys on top. (Frankly, he may try even if they do…) We had to get a special safety bed because he climbs on everything without fear. One night, fearing he would fall out of his crib, we tried a toddler bed. We watched on the monitor as he climbed out, got up on Duncan’s bed, and climbed across Duncan’s head in an effort to get to the curtains so he could play with them.
Miles is a miracle. Three separate times in my life – while pregnant, when he was a neonate, and when he was 1 year old, I thought I would lose him. Right before he turned two we got a diagnosis that made us believe that his time with us would be short. He keeps defying odds and expectations. As his epileptologist put it “Miles didn’t read the book. He doesn’t follow the rules.” As my sister-in-law Carin put it “Miles doesn’t know what his diagnosis is or what it’s supposed to mean. He’s just being Miles and doing Miles things.”
Miles is a life saver. I mean this in the most literal way it is possible to mean anything. Because of Miles’ major status seizure when he was one, he acquired many of the specialists he has now. One of them was a geneticist. Because of Dr. Zhang I learned that he has a rare genetic mutation in the BRCA1 gene, which increases the chance of developing breast and ovarian cancer in women. I was able to take steps via preventative surgeries to reduce those risks so they are now practically non-existent. Additionally, this past summer in a search to find out why he wasn’t gaining weight or height, and prompted by Auntie Llama’s vigilant suggestions, Miles was tested for and diagnosed with Celiac Disease, which is, it turns out, also genetic. A few months later I brought it up with my doctor and found out I was also afflicted. Duncan and Verity also have been tested and carry the genetic marker, but are not diagnosed. They may never develop it, but now we know to watch for both that and its best pal, Type 1 diabetes.
Miles is a natural educator. He has taught me so much about what it is to be a mother, a person, a patient. Like many young people, I put far too much stock in what other people thought of me. This past year I was surprised to learn that I just didn’t care any more. I am doing everything I can and yes, sometimes I may fall short, but I have learned much of what is truly important, what just looks important, and what I can control.
Finally, Miles is challenging. He has had four surgeries and is scheduled for one more. He has epilepsy that we can’t seem to get completely under control. (To be fair though, he went from having hundreds each day to just a few dozen or so…) Though he’s getting physically stronger, he doesn’t generally walk more than 50 steps at a time. (Although 50 steps at a time is amazing!) He needs a wheelchair when we go out. He has a dozen medical specialists, and that’s not hyperbole. He needs weekly PT, OT, and speech therapy. He generally does not respond to his name and he does not say any real words. He doesn’t seem to understand safety concerns or changes in tone of voice when we try to alert him to danger. When Duncan gets frustrated that Miles will probably knock down his tower/building/whatnot, he’s probably right, and when he gets upset about it, Miles thinks it’s a hoot and laughs. It’s hard to explain to Duncan why that’s okay. And it’s currently impossible to explain to Miles why it’s not okay.
His challenges add to our life-as-a-family-challenges. We need room in the van for his wheelchair at all times. When we go to his appointments there is rarely enough handicap parking to maneuver his wheelchair so I have to park like a jerk in the compact-car sized parking spots in the rest of the lot. I have never been good at asking for things but I have learned and continue to learn to be an advocate. It’s a work in progress. We have all had to learn to balance and prioritize—sacrificing some things that meant so much before, but that now seem trivial.
Despite the challenges inherent in being Miles’ mother, I find that being Miles’ mother is the easiest part of the job. He fills me with so much joy, and each gain feels like we’ve conquered a new mountain. He has long since decided that he wasn’t going to follow anyone else’s instruction manual, but instead that he’s writing his own story. I am so blessed to be able to read along.
For the story leading up to this entry, please click here.
I remember when we were getting ready to be discharged after I had Verity in 2008. Outwardly I was expressing the relief I believed I was supposed to feel at the prospect of finally going home. Inside, however, I was terrified. We were packing up the extraordinary amount of stuff we were taking home from the hospital and I wondered if I could sneak a nurse in there, just to make sure we could keep her alive overnight.
So of course we were obnoxiously careful about everything we did once we came home. Ian took her on a tour of the house. When it came time to put her to bed I nursed her, we put her in a clean diaper, some cozy pajamas, and swaddled her up good – just how she liked it.
We had a cradle that Ian’s great-grandfather had made for Ian to use as an infant. We set it up next to the bed on my side and set her down. We got into bed ourselves and turned off the light. I couldn’t see her. It was too dark. I was used to the lighting and the rolling crib thing from the hospital and our bed was too high and the cradle was too low and I couldn’t see her so surely if she stopped breathing or suddenly somehow wiggled out of her swaddle and started suffocating I wasn’t going to notice and… and… and… panic attack.
Sleepy girl on her first day home. Clearly she is in peril.
If you know Ian, you know that he has a couple of superpowers. He is very dedicated to the things he cares about, for example. He also is very impressive with spatial reasoning. But his most excellent superpower is sleeping. That man can – and will – sleep anywhere. By the time I was in full-on hysteria about her not making it through the night he had already fallen fast asleep. I shook him awake, crying and blubbering. He installed a soft light. He offered to bring in her crib so she would be higher up. I insisted it be right next to me, so I could see her just by turning my head. Now, if you can picture the set up of our bedroom at the time, it was like this:
So, the crib had to come in to the room and through the space between the bed and the dresser on the other side. Except it was too wide. So Ian, hulk that he is, lifted the entire crib over the bed and placed it next to my side of the bed. It took up the whole rest of the room. She looked tiny in there. So pink and tiny and fragile. But she slept, and, eventually, so did I. It was a terrifying night, but once the morning came and she was still alive, subsequent nights became a little easier. She has managed to survive every night since, and she’s 9 years old now.
She wants you to know she made (decorated) this hat.
Flash forward 5+ years to the day after the mid-night we brought Miles to the NICU. We somehow made it back to the hospital where Duncan was. I think there was a good deal of waiting for paperwork and two carseat tests before he was cleared to ride the mile home in the car. Ian got us settled, gave Duncan a quick tour of the apartment we were living in, and we arranged for him to return to Massachusetts General Hospital (MGH) to spend the night with Miles.
My parents were staying with us, which was such a relief, because it meant that they could focus on Verity and I could focus on Duncan. I was so tired from the lack of sleep the night before and trying to get Duncan home. We were still working on getting nursing right, and I was pumping as much as I could for when Miles would be able to eat again, but I have never possessed the coveted milk factory mammary glands some women are blessed with.
I told my parents I was going to bed. It was early. I brought Duncan in to my room and set him up in the little crib we had for him. I felt empty. He would cry and I didn’t know why – he wouldn’t eat, his diaper was dry, and he wasn’t going to sleep. I wanted to snuggle him so we could both go to sleep but I was afraid to bring such a small guy (just under six pounds at this point) into the bed. He was too little for a carrier and I didn’t want to leave the room in my fragile emotional state to ask for help. All I wanted to do was sleep and all he wanted to do was cry. I just kept thinking we made a huge mistake bringing more babies into this world when clearly I was not qualified to mother them.
I knew that on the other side of the door I had support, but I couldn’t bring myself to ask for it. Knowing you’re a failure is different than admitting it to others. I got hungry but didn’t leave to eat. So Duncan cried and I cried and in Boston at the NICU Miles was fighting for his teeny tiny life while his daddy was having a very different night than the one we were having. (Maybe I will be able to convince him to contribute a post of his own…?)
Meanwhile, thankfully, Verity took it all in stride, tickled to have the full attention of two grandparents who brought her to the pool whenever she wanted, and she was so proud to have new babies. She made pictures for Miles to keep at the hospital because she couldn’t visit yet, but she wanted him to have a part of her with him. Her sweetness and optimism and joy over the next days, weeks, and months served as a battery recharge when all seemed spent. We put a lot – too much – on her little self, but fortunately we had done some things right and she was up to the challenge.
I don’t think I could tell you with honesty that my first night at home with Duncan was more scary than the first night with Verity, even with Miles in his emergency situation—Ian was there, so I could leave most of that fretting to him, I guess. Both nights I was let down by my own feelings of fear, of inadequacy, of disappointment. Both times I was dealing with more than the typical first-night-home, but the first time I didn’t realize it yet (I was incredibly sick and ended up going back to the hospital for 11 days). Despite that, I strongly doubt that I was alone in this experience.
In that vein, parents: I want to reach out to you. The first night you were home, wholly responsible for someone else’s life, what was it like? I’ve heard stories of people who could not wait to get out of the hospital and get home… to me, these people are mystical creatures. Even more mystical are the parents who do it all at home, especially the first time. I am in awe of those parents. If you’re up for it – tell me those stories. Comment below, or on the Facebook page, or send an email to Smiles4Milesy@gmail.com. I look forward to reading them – and possibly compiling them into a later post (all requests for anonymity will be honored.) If you adopted or became a step-parent, you still have a first night as a parent – I would love to hear about those too. Were you confident? Comfortable? Blissful? Or were you a mess like me? Somewhere in between?
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Five or six months before Miles was born, we were told he wouldn’t make it. At this time he wasn’t Miles yet; he was “Baby B” to Duncan’s “Baby A,” or more fondly, “Wayne” to Duncan’s “Bruce.”
Weeks later, at the anatomy scan it seemed he may make it, but he may not be well. He was less than half the size of his brother and not growing. He was diagnosed with a condition called Intrauterine Growth Restriction (IUGR), which is sort of code for “bad placenta.” We began a vigorous cycle of two perinatology appointments per week with ultrasounds where they would check for signs of life, signs of growth, signs of development and viability. We had a lot of questions about his future, but it was clear from the standpoint of the doctors that the goal was to have two living babies.
It was a real balancing act at times. There were three different perinatologists with three different opinions about the risk-benefit analysis. There was another healthy baby in there who we wanted to keep as healthy as possible. The longer we waited to have Baby B, the more risk of having a stillbirth, but go too soon and we risk having two babies in need of lots of extra medical attention. I learned a lot by watching about how to read prenatal ultrasounds and we actually got to the point where I didn’t even want pictures every time. Ian didn’t accompany me to all of them – there were far too many for him to miss that much work.
The due date was July 26th. My personal best-case-scenario goal was just to make it to July. Other goals included making it far enough to give birth at the local hospital (which didn’t have a NICU but was about a mile from our house). If I remember correctly, that could happen at 32 weeks.
I remember being pretty ambitious and optimistic before I got too deep into a twin pregnancy. We bought Red Sox tickets for mid-June and tickets to see Pink Martini the last weekend in June. My first pregnancy had gone on forever, it seemed, and I was annoyingly chipper throughout, so I really expected this one to be just as sunny. When my obstetrician suggested, on the last Thursday in June, to deliver the babies the next day, I exclaimed, “But we have concert tickets this weekend!” He made me do daily non-stress tests and said if I passed, I could go, but that he wouldn’t let me go more than another week. I made the deal and we saw a fantastic show. I hit a man in the back of his head with my huge pregnant belly when I stood up to go to the bathroom, but he didn’t seem to mind. The first time, anyway.
It seems I have digressed. Two days after that amazing concert I was told we were not allowed to wait any longer. The babies had to come out, and they had to come out today. A quick phone call to Ian’s mom, who leapt in her car I think as soon as the phone rang, and we were in business. They were born at 4:29 and 4:30 pm on July 1. Duncan was 6 lbs 3 oz. Miles was 3 lbs 12 oz. Both of them had great color and Apgar scores – hooray!
Duncan came out first. At this point he still had no name, but when Ian showed him to me I said “aw, he’s baby Verity!” because he had nearly the same face. I remember then, seeing Miles (who also still didn’t have a name) and thinking “who’s this redheaded guy?” Ian said “I think he looks like Wallace Shawn…”
Anyway, Duncan was cleared to be in the hospital room with me almost immediately, but Miles had to spend some time in the special care nursery (SCN). He was so small. He had a tube in his nose for feeding, lived in an incubation thing, and had a bunch of monitors. Ian and I were the only people who were allowed to go in and see him. Visitors had to hope he was awake and that a nurse would be free enough to bring him over to the window.
At first, we played the babies man-to-man. I was working hard to heal and to get Duncan to nurse so I spent most of the time in my hospital room with him. Ian went to the SCN and got to know the nurses there, held Miles, spoke to him, mussed his wee red hair (insisting “he likes it better like that,”) and just being a terrific daddy.
At one point they let Miles come in the room to be held and try nursing, but only for a short time. I became frustrated because they didn’t tell me why he couldn’t be with me, but they also wouldn’t let him come back after that. I felt a little alienated from him, but also, I was terrified.
I was terrified to love him. I’ll say it again: I was terrified to love my own son. He was so small, so fragile, and so potentially sick, that I was scared to become attached because I didn’t know how long we would get to keep him.
I felt like a bad mother. This was a familiar feeling, having struggled with some serious post-partum business involving infection, an extended hospital stay, and severe post-partum depression after Verity, my first, was born, but it was different also.
I felt like a bad mother because I avoided going to the SCN to visit. I felt like a bad mother whenever I left the SCN to go back to my room and Duncan. I felt like a bad mother when he couldn’t nurse.
Speaking of nursing, there was one nurse there, let’s call her “Margaret,” upon whom I focused all of my frustration with myself and with the lack of communication I was getting. She seemed to love him extra, when I was having a hard time with that myself. In my head, Margaret thought she could love Miles better than I could. In my head, she didn’t want him to come to my room because she wanted to keep him for herself. In my head, she was intentionally keeping information about him from me. I was convinced she was hesitating when I wanted to hold him and he was already in her arms. I was sure that she thought I didn’t deserve him. When he was four days old, on Friday, when I went to see him, Margaret was holding him, and he was quiet. I walked over to her and she handed him to me. He fussed and cried and seemed like he wanted to get away. I tried to nurse. He didn’t want to. In that moment I believed “he loves Margaret more than me.” I died a little bit and left.
Friday night we were asked to come into the nursery together. Jill, also known to us as Best Nurse at Emerson, had noticed the extra fussiness I had witnessed and grew concerned, so she checked his stool for blood and found it. They rushed a machine in and did a KUB (Kidney, ureter, bladder) X-ray. They told us that he likely had a disease called Necrotizing Enterocolitis (NEC) and that they had already called a transport to take him to the NICU at Mass General. He was not allowed to eat and they had already started antibiotics.
In a nutshell, NEC is a gut disease that almost exclusively affects newborn preemies. Even though Miles wasn’t actually much of a preemie, having made it to 36.5 weeks, his body had been malnourished in utero (there’s that guilt again…) so he was more susceptible to preemie issues than his twin brother. If not caught early, it can cause a perforation in the gut, which can cause waste to leak out, creating infection and all sorts of horrible things. For more reading, here’s alink from the Children’s Hospital of Los Angeles.
Time slowed to a crawl while we waited for the ambulance to come. They said someone should ride in the ambulance with him, but we couldn’t both ride along. Duncan could stay in the nursery. Somehow we agreed that I would go –probably because I couldn’t drive myself, and Ian would follow in the car. Waiting for the ambulance seemed to take forever. When we finally got word that the ambulance had arrived, Miles was strapped into an incubator and we set out through the hospital, via the emergency room. As we walked through the emergency department we caught the eyes of all of the people who were there, with one emergency or another. I can only imagine the thoughts in their heads as they, with their various urgent medical needs, watched a tiny baby go by, pushed by emergency medical crew, shielded from view by the sides of the incubator and the tubes, wires, and monitors. His sounds of pain and discomfort were audible, though barely. Beside him rushed his mother, still in two layers of hospital garb with pajama pants and flip-flops, recovering from surgery, avoiding gazes and rushing as much as she can to keep up; the worried father silently but easily keeping pace with the crew. It felt like we were being sung a song of pity, worry, and fear by a silent choir.
The ride to Massachusetts General Hospital (MGH) was terrifying. There was comfort in hearing Miles’ weak cries from the back; noise meant he was still breathing, but he was clearly in a lot of pain. Each bump on the road was accompanied by a re-invigorated set of uncomfortable sounds. The ambulance driver, in attempts to alleviate my fears, would alternate between complaining about how our tax dollars were not being used adequately to fix the roads and telling me to take comfort in the fact that we were able to drive without the lights and sirens. He drove cautiously, trying to minimize the bumps. Traffic was minimal, as it was the middle of the night. The Cambridge Hyatt was lit up red, white, and blue for the fourth of July. To this day I can’t drive by that hotel (which is easily seen from Route 2 and which I have passed many, many times) without thinking of the drive, the ambulance, the hospital. It is burned into my brain as if it was actually a part of the hospital or something.
At long last, and past midnight, we arrived at the hospital. Ian met us there, though I couldn’t tell you who got there first. I cannot imagine what his drive was like, alone, without the reassurance from the paramedics in the back or the odd nervous ramblings of the driver.
I have to admit to you that I don’t remember everything at this point, about how long we stayed there, about when I brought Duncan home, but I have a few very vivid memories:
The night doctor who was there waiting for us was also called Sara, though she may actually have been Sarah, I made no joke about it.
Dr. Sara and the nurse (Candy? Susan? Well, it wasn’t Sara… Let’s say it’s Candy…) were waiting for us when we arrived. That was oddly reassuring.
Dr. Sara gave us a rundown on what was happening in Miles’ little body. A surgeon popped in periodically to check in and there was a mobile X-ray machine at the ready.
Candy (Sharon? Sandy?) was also quite calm and, to me, very reassuring. She explained, as they were hooking Miles up to all sorts of machinery, that, although he could breathe and do other things on his own, his little body had a lot of work to do to heal, so they were going to take over the other stuff for a while so his body could focus on getting better.
Side note regarding Candy (Donna? Pearl?): As Miles got better, Ian and I both noticed something peculiar. She, who was so warm and who explained things and assured us the NICU was there for the whole family, and who gushed about the special love Miles could feel only from us, etc. etc., seemed to have a singular goal every time we saw her: to make us cry. Now, I can’t believe that was her intention, but man oh man did it seem that way… her voice would change and she would talk about the “special bond…” By the end of our time there, I found myself fighting it, “I won’t succumb. You won’t get me this time, NURSE WHOSE NAME I WON’T BE ABLE TO REMEMBER IN 3 YEARS…” I eventually won (by which I mean I was not reduced to a blubbery mess…)
Side note regarding my side note: The nurses in the NICU were amazing. The doctors were great, but the nurses were incredible. Miles’ first night there, after the arrival, Ian went by himself and there was a nurse, Beth (her actual name), who made Ian eat, who made him sleep, and who was just plain awesome. Nurses are heroes. NICU nurses are superheroes.
Eventually, somehow, at some point, we returned to the hospital where Duncan was. It wasn’t until late Saturday when Duncan was discharged and I took him home. Ian returned to the NICU for our first night “home.” And so began our new normal for the next month.
Epilogue: as I typed this, Miles went from unplugging and attempting to re-plug the charging cable from my laptop to trying to help type, to delighting in removing my glasses and replacing them on my chin. In his opinion, he is the funniest person playing the best game ever. He is so excited about the jokes he’s playing on me he can barely follow through with them.