Life With Miles

Hindsight Blog #3: The NICU Part II

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.

7-14-13 2 boys 1 shirt
2 boys, 1 shirt

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.

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.

z7-19-13FirstFeeding
First feeding

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.

7-25-13BrotherlyLove
This is one of my favorite pictures of all time.

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.

IMG_1205
Multitasking
Life With Miles

Hindsight Blog #2: The First Nights Home

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:

 

*Not to scale **Also, door is just plain wrong. It should open in. 

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.

IMG_2161
Grammie and Duncan, Home Day #1

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 mean, come on.

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?

***

Feel free to subscribe and be notified when I post new stuff!

Life With Miles

Hindsight Post #1 – Acronym Soup: IUGR, SCN, KUB, NEC, NICU

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. 

Womb Profile Miles

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…” 

Inconceivable
Inconceivable! (This picture is of Miles at a few months old, not at birth.)

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.

MilesThroughWindow
July 3 or 4, through the window and displeased.

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 a link 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.