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Recently, Heather Spohr at The Spohrs are Multiplying asked her readers to help her prepare for a speech she will be giving to doctors and nurses of the NICU.  She asked those of us with NICU experience to explain ways that NICU doctors and nurses could better care for our children and help us parents deal with the trauma associated with long-term NICU stays.  

I am very lucky to be able to say that our experience with the NICU staff at Rady Children’s Hospital in San Diego was extremely positive (or I should say as positive as that experience can be).  I can’t imagine anything more traumatic than watching your newborn (or your child of any age) sedated and on life support, struggling to survive.   During the first few days of the Bunny’s NICU stay we could not even touch him, let alone hold him.  We were completely dependent on his NICU caregivers.  We were at their mercy.  

And they were wonderful.  We spent every possible hour in the NICU.  The nurses and nurse practitioners were our friends during otherwise lonely and isolated days.  They consoled us when we cried.  They gave us their chairs to sit in.  They taught us how to care for our fragile little boy.  They patiently helped us learn to change his diaper, take his temperature, and eventually feed him.  They helped me learn to breast feed (which is very difficult with a preemie) when the lactation consultant wasn’t available.  They displayed his special blanket just so.  Most of them made sure we knew what was going on and volunteered information that we didn’t know how to ask for.  

The Tiny Tiny Bunny and his favorite nurse

The lactation consultant made the impossible possible.  She instructed me, positioned my pillow, gave me hope and made sure that the nurses gave me an opportunity to try breast feeding every day.  The respiratory therapists, physical therapists, and occupational therapists, worked tirelessly to help our boy.  Whenever possible, they tried to plan visits for times that we would be there, so that we could be involved with his treatment.  

When the Bunny first arrived, and he was very sick, the Mayor had a meeting with the neonatologist at the bedside.  The next day, the NICU social worker set up another meeting with us and the neonatologist and made sure all of our questions were answered.  The neonatologist was great.  She was not rushed with us and went so far as to discuss things we should be aware of regarding the Bunny’s future development (things like precautions against RSV, adjusted age milestones, and a trend towards delayed kindergarten starts for boys).  Once the Bunny was starting down the path of recovery, we didn’t see as much of the doctors (though we heard the Bunny was one of the doctor’s “favorites”).  If we were there when they were doing rounds, they always volunteered updates and asked us if we had questions.  We always knew we could ask for another formal meeting through the social worker, but the nurses kept us so well-updated, we didn’t feel like we needed it.

The social worker also volunteered to write a letter to the Mayor’s boss explaining that he needs to be in the NICU with the Bunny.  She had it ready the next day.  Whenever we saw her in the hall, she checked in with us, and made special times to meet with us to make sure we were getting our questions answered.

The only time we felt marginalized or disrespected was when we were checking into the NICU.  To get into the NICU, you  have to use the phone on the wall to call the nurse at your baby’s bed and ask if you can come back.  You then wash your hands and tell the person at the desk that you have already called back.  They then push a button that opens the doors to the NICU.  Often the people sitting at the desk ignored us while we stood there or seemed annoyed or bothered by our need to get in.  If we wanted to ask a question at the window during times the NICU was closed, they were really annoyed with us. This was upsetting.

So, what would I suggest to other NICU workers?  Understand that parents are at your mercy.  You have all of the information about their child, you have the access to their child, you are responsible for the care of their child.  This is not the way the parent-child relationship was meant to be!  Treat the children and parents with respect.  Facilitate their relationship. Treat them as parents and children – not just patients.  Volunteer information to parents.  Try to think of ways you can help them.  Has the parent brought in a cute outfit, a hat, or a blanket?  If not, have you told them that they can?  If they have, use it.  Is the parent changing diapers if that is possible?  If not, have you told them they can?  Have you shown them how to navigate the IV lines?  Have you shown them how to navigate the system?  The child’s health is always most important, but when possible, even if its just for a moment, try to see beyond the monitors and the tubes and think about the bonding and comfort of the parent and child.  The smallest gestures can make a huge impact on how the parents and child will they go on with their lives when they leave your NICU.

Thank you to our NICU workers for taking such good care of us and our Bunny!  We can never thank you enough.

This is the second in a four-part series. Sequels to follow.

I had an extremely easy pregnancy with the Bunny.  No morning sickness, no concerns about my health (except for that time I gained six pounds in a month – whoops).   No concerns about the Bunny besides a brief Cystic Fibrosis scare when we found out I was a carrier.   I never even got sick.  Everything was looking great.

I was also an insanely happy pregnant woman. The Mayor even bragged frequently that I was the best pregnant woman ever (Yes, he’s a smart man). I didn’t cry my entire pregnancy except one time when I told the Mayor that the Bunny’s room needed a second coat of paint and he announced You are the mother of my child and I love you, but I HATE YOU. (Not so smart that time.)

The Day Before the Mayor Gave Up Veganism

The Day Before the Mayor Gave Up Veganism

I also followed every pregnancy rule to the letter. I did not drink smoothies or fresh squeezed juice. No lunch meat, no alcohol, no soft cheeses. What else is there? Well, whatever it is, I followed it.

We had taken every pre-baby class imagineable – Redirecting Children’s Behavior, Infant CPR, Daddy Bootcamp (for the Mayor), Hypnobirthing (planning “natural” birth), Bringing Home Baby, etc. You name it, we took it.

We had hired a doula and written a birth plan. I heard somewhere that the longer the birth plan, the more likley the c-section, so I had even made sure to keep it to one page. (Yes, I followed ALL the rules.)

I was 32 weeks pregnant and everything was going along perfectly.  We were getting anxious to meet the Bunny, so I had a little talk with him.  I told him that he was invited to join us in the world on October 4th (two weeks before his due date and after I planned to start maternity leave).  I thought he was on board with that plan.

Around that time I told my Vegan co-worker (she is known in many circles as “the Vegan,” so she would not be offended by this over-simplification of her identity) that the Mayor was intrigued by her moral position on the matter. The following week, she arrived with a plethora of Vegan propaganda literature for the Mayor’s cosnideration. I brought it home and the Mayor went Vegan the next day.

The worst part was that the Mayor’s moral revelation was creeping into my head too. Suddenly, I was thinking, What gives us the right to store animals in inhumane conditions and pump them full of antibiotics only to kill them and EAT them. But even worse, I started thinking, What gives us the right to store animals in inhumane conditions and steal their eggs and milk them with a MACHINE against their will?   This was the scarriest part because, OMG, I wouldn’t be able to get pastries at Panera! Luckily, I was able to postpone this dilemna, because, for God’s sake, I was 33 weeks pregnant, and that just wouldn’t be good for the baby, right? Right.

Little did I know…the day before the Mayor gave up Veganism, chicken would be my demise.

Stay tuned…

This is the first post in a four-part series.  Prequels and sequels to follow.

Two days after he gave up veganism, the Mayor wheeled me down the white hallways decorated with butterflies and tributes.  My legs and hands shook, but luckily my stomach was still numb.  We washed our hands with scalding hot water.  I had never cared so much about clean hands.

The Mayor already knew the ropes.  He picked up the phone by the sink and called the nurse.  Its the Bunny’s parents.  Can we come back?  We showed our bracelets to the woman behind the window.  The bracelets displaying our son’s name.

The NICU at our labor and delivery hospital was small with mostly healthy little feeders and growers.  This NICU was huge.  I saw babies smaller than my hand, weeping parents,  lights and bells, mothers caressing their babies through the tiny holes of sterile incubators.

We got to the Bunny’s bed, and I cried.  He had his very own nurse who was caring for him, and only him.  As I cried, she rubbed my back, and said, I can’t even imagine.  This woman I had known for seconds, said the perfect thing, the only thing that could be said.  I asked her how the Bunny was doing.  

Well, he’s a very sick boy.  

I didn’t know what that meant.

I sat next to my baby, and I cried.  The drugs made him sleep as the machines around him made his chest rise and fall.  We watched every number on the screen above him, trying to find some meaning in them, nervously awaiting intervention when bells rang and whistles blew.  

We could not hold our Bunny. We could not even touch him. So, we sang to him and read to him.  Again, I cried as I read The Little Engine That Could.  I tried not to cry for my little boy, but I could not stop.  So, I read Hop on Pop. As I read Seuss’ rhymes, I tried to control my voice, for fear that if my voice sounded too fast and rhythmical, bells would chime as his heart rate soared.  He seemed so fragile.

Every three hours I left his side to pump milk, hoping for the day that he would be able to drink it.  Every afternoon and every evening, the NICU closed for a few hours. We wandered the white halls, sat in the gardens, and ate donuts in the cafeteria, waiting for the doctors and nurses to save our baby.  At night, I slept next to my pump, while a stranger cared for my very sick boy.

There is something you should know about me, but please don’t tell anyone.

I am an introvert.

Some people who know me would be surprised by that. I am not overly nervous or shy, and can be quite outspoken at times. I have a small group of good friends, most of whom I have been friends with forever, and most of whom do not live within driving distance of me. With the Mayor, the Bunny, my parents, my siblings, and my friends, I can be talkative and silly. I can be myself.

I appear confident at work, and I can even handle myself in a big group of people. But here’s the thing – I don’t like to. I hate parties where I only know one or two people. I hate networking. I hate making small talk. It exhausts me. I would rather hang out with the Mayor and the Little Man (or even by myself) than go to happy hour. Is that so wrong?

I have been reading about other Mommy Bloggers who went to Blogher last weekend with thousands of other women. From the sound of it, gossip, cliques, competition, secret parties, and judgment were rampant. Blogher sounds like my worst nightmare.

Of course this introversion has drawbacks when you move often. We have lived in San Diego for over two years now, and still have few people who we would call friends. Before the Bunny was born, this did not concern me. I thought the Mayor and I could handle everything on our own. In fact, I specifically told my mom that I did not want her to visit during the first few weeks after the Little Man was born because the Mayor and I wanted to have the time to figure things out ourselves and bond with the Tiny Bunny.

And then, wham! The Tiny Man arrived six weeks early by C-Section. The first day, he was in the NICU at the hospital where he was born. Then at 4 a.m. the next morning, the Neonatologist came into my hospital room and woke up the Mayor and I to tell us that the Bunny was being transferred to a different hospital because he needed a higher level ventilator. My mom arrived that morning, the Mayor’s dad was there the next day, and my Dad the week after. We could not have survived without them.

Luckily, the Little Bunny made it through, and was at home three weeks later. We were so glad. This is what we had been longing for those three long weeks. But by the time he was home, our parents were gone, back to the other side of the country. And there we were. In San Diego. Just us and our Bunny. Our Bunny who slept for twenty minutes at a time. Our Bunny who had reflux and colic. Our Bunny who could not be exposed to germs. Our Bunny who hated hates his car seat. Of course, our parents did come to visit here and there, but they live 2,000 miles away. We were mostly on our own.

Now that we have the Little Man, I wonder if my introversion is a liability. I wonder if we need to push ourselves to make new friends wherever we go. I wonder if we actually can’t do it on our own. I wonder if we need community. I’ve been trying. But its hard.

When my son was born, “tiny” took on a whole new meaning. He was born six weeks early (long story – we’ll save that for another day) at four pounds three ounces. He spent three weeks in the hospital with sepsis, pulmonary hypertension, hypotension, and respiratory distress. He was sedated, received a blood transfusion, and was on a high frequency oscillator ventilator. The early days were the scariest and most heartbreaking of our lives.

Tiniest Man

Tiniest Man

And then, thanks to the amazing care he received, he was better! He now weighs about 19 pounds, but we still call him “tiniest littlest man.” I look at one of the hats he wore in the NICU everyday, and I cannot even believe that his head was once that small (he has a really big head now!).

IMG_4439

With tiniest littlest man being so big these days, “tiny” has yet again taken on a new meaning in my house. A few weeks ago, I heard an NPR piece on people who are choosing to live in tiny houses to achieve a simpler life. Around the same time I read this article on WSJ’s Blog, the Juggle about whether the “frenzy” of maintaing a home is worth the benefits. This got me thinking.

Since we left law school and got married, we have been on the go. As all of our friends began settling down and buying homes, we moved from place to place (three moves in three years). We were never settled enough in any one place to actually buy a home (as much as I wanted to). Given that we have lived in some of the most expensive housing markets in the country (and given the current economy), this is likely for the best. But this lack of “home” set me into a buying frenzy. I felt the need to build a portable home of sorts. I began acquiring furniture to fill all of the necessary rooms of a conventional house, a myriad of pots and pans, wine glasses (for red and white), hot beverage glasses (not to be confused with mugs), sundae glasses, fondue pot, Kitchenaid mixer, and an assortment of pillows and duvets.

When we found out we were expecting the tiniest man, we decided to move from a two bedroom apartment in a nice walkable area to a rented home in a not as nice and not nearly as walkable area. We thought we needed more room for our tiny man. And a proper house just seemed like the next step, even if we weren’t buying. We were wrong. During the early days of caring for a preemie, I rarely used the nursery. But, I would have given anything to be able to walk out my front door, wearing my baby bunny, and head to the mall, the library, the park, the coffee shop, or the drug store without setting foot in my car.

So, we have begun to shed some of our belongings. We posted them on Craigslist. Many evenings we walk over to our neighborhood Starbucks (the only thing we can walk to) and sell some of our extra baggage to a total stranger. It is like our part time job. The more we sell, the more I realize how much we don’t need. We have decided that next time we move, we will “downgrade” back to a two bedroom apartment in a nice walkable area. Rather than collecting stuff, we will enjoy all that our community already has to offer.

“Tiny” living will be so grand.

I might keep the mixer though.

About Me

Mom to a one-year-old Super Bunny. Amateur cook and photographer. Tiny living enthusiast. Lawyer who would rather write about muffins than motive.

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