Tuesday, April 30, 2013

Hurricane Sandy


We had just moved into our house-barely 3 weeks and expecting a hurricane with a preemie who required electricity-refrigeration for her medications, power for her monitors and oxygen, heat because she couldn’t yet regulate her body temperature.  We expected to lose power-our neighbors had warned us that if happens, a lot, in our neighborhood.  We had flashlights and coolers and I even spoke with PSE&G because we had priority power restoration due to Lily’s medical needs.  I spoke with her doctors who told us that if we lost power for more than 48 hours that we needed to come to the hospital-a medical bill that we would be completely responsible for and with a new house and me not working, we weren’t okay with that.  My parents always lose power but get it back quickly, so we figured we would just go to their house in the worst case scenario.

We lost power before the storm actually hit-a couple of massive trees at the beginning of our street fell across the street, blocking entrance and exit to our house, and knocking down a bunch of power lines.  One of the trees literally shredded-they haven’t cleaned it up, so you can still drive by and see it-it’s like someone came by and sheared the side of the tree (sheared, like a sheep's wool, only they left the stubble).  The hubby went out to survey the damage.  The street was impassable and we live on a dead end.  My calls to PSE&G went unanswered-busy signals and hours upon hours of waiting.  We figured we would get power once the storm was over and we bunkered down for the night.

It is important to note that since we didn’t have power, we were completely unaware about what was happening in NYC and the Shore.  We were still in such an emotionally heightened state with Lily, everything seemed worse and more dire for us than it really was.  But at that moment, we were freaked out.

The storm passed overnight and we relied on the emergency oxygen tank and coolers filled with ice packs.  As the temperature dropped throughout the next day, and my calls to PSE&G were answered with regret, we went to our neighbor’s house and sat in front of their fireplace, warming Lily and playing Guess Who.  My parents didn’t have power, and they didn’t know when they were getting it back.  We were hearing rumors that it could take a week for us to get the power restored.  Hotels were booked.  Believe it or not, the most logical next step was to go into Manhattan and stay with my sister and brother-in-law.  Lily’s suitcase was the largest, filled with diapers and formula and, essentially, all of her clothes and anything she could need (bottle warmer, bottle sanitizer, extra wires and bands, etc…).  The hubby drove as I hovered over Lily in her car seat, convinced by shear will power that my physical body could solve any problem she might have-this was her longest car ride, and not in the best circumstances.

At this point you might be asking yourself, "Wait a minute, you said the street was impassible.  How did you get out?"  What a smart reader you are.  It turns out that there is an emergency evacuation route on our dead end street.  A few houses down from us is this white house that doesn't quite fit with the rest of the neighborhood.  If you go down the driveway, it veers behind the house and becomes a bona fide 45 degree-angled escape driveway which connects to the main road. Also, the house is owned by Mary Higgins Clark's daughter...go figure.

Back to the narrative...So 4 adults, 1 preemie, and a loud and heat producing oxygen convertor in a 700 square foot one bedroom NYC apartment, one bathroom, a galley kitchen overflowing with all of Lily’s medical and nutritional needs…it paints an interesting picture.  Warren and my brother-in-law walked to work while my sister and I hung out all day with the baby.  Even my parents and cousin came over for dinner and Halloween.  I ate a lot of candy.  All 700 square feet were strewn with wrappers and baby vomit and Lily wasn’t that happy in her football costume, but she was so cute that we didn’t care about the close quarters-we had a place to live, granted, we used to live in that apartment so we were also a little bit elated-it was so nice to be back in our old neighborhood, to bundle Lily up in layers upon layers, and then cover the carriage so no one could breathe on her as we strolled the aisles in Trader Joe’s and Fairway.  To just go for a walk with my child-something I had yet to do-a major blessing.  And when I got my period and a migraine on the same day, my sister looked after Lily so I could sleep/moan on the couch.

After a few days of imposing on my sister-and really, it didn’t feel like imposing because my sister was so happy to have us and to help take care of Lily and laugh and eat chocolate and make fun of the boys who had to go to work while her school was majorly cancelled and Lily was adorable and happy and eating well and had no issues-my parents got their power back and we opted to move to bigger digs.  The hubby worked from home since we couldn’t get any gas for his car to take him to the bus.

Eventually we got our power back (our most amazing neighbors kept us in the loop the entire time) and we waited a full 24 hours so the house could warm up.  Lily got to spend her first Halloween in New York City, which I’m hoping to use as a pacifier in the future when teenage Lily asks to go to the village Halloween costume parade: “Sorry honey, you’re too young, but you did spend your first Halloween in the city.”

Lily's first Halloween!

That's my sister, dressed as a Giant's fan, holding football-costumed Lily!  I should note, my sister is a real Giant's fan, it's not just a costume for her.  Lily will also be a Giant's fan because, despite her father's love for the Jets, the Giants are actually good.  Go Big Blue!


Monday, April 15, 2013

At Home Medical


This requires some explanation because, unless you also took a preemie home with you, it’s hard to understand that you don’t just take the baby home.  You also take an apnea monitor to make sure that she’s breathing, and an oximeter, to make sure that she’s well oxygenated, and an oxygen converter which takes room air and delivers it through a cannula, and travel oxygen tanks for when you travel to doctor’s appointments (you’re really not allowed to go anywhere else for quite a while), and a large emergency oxygen tank in case the power goes out.

The hospital doesn’t provide the equipment or the training on how to use the equipment-for that, there are companies like At Home Medical.  As I mentioned before, we had a couple of ‘coming home dates’ that never happened.  During one of these almost coming home moments, we scheduled our appointment with At Home Medical (AHM).  About an hour before AHM got there, our doctor informed us that Lily wouldn’t be coming home, so I was an emotional mess.  Then the AHM trainer came, completely oblivious to our situation, and every time we went over the different wires, or how to attach them, or what to do when the alarms went off, I had to swallow down tears.  I could barely stay in the room as my hubby explained that no, we were not taking the baby home.

I went back to the NICU and tried to calm Lily-she wasn’t coming home because her sleep study showed that her acid reflux was so bad that the acid coming up her throat overnight had a ph balance between 2 and 3-that’s somewhere between lemon juice and vinegar on a ph scale.  No wonder she threw up all over her doctor that morning and she wouldn’t stop screaming and she was beating her tiny fists against my chest, her neck wrenching back in agony.  And then the AHM trainer wanted me to practice attaching the equipment to my tiny child.  No thank you.

The company delivered the oxygen converter and other equipment to my parents’ house to await the day we could finally come home.  The AHM trainer told us that the converter was the size of a small box…it was the size of a large, carry-on rolling suitcase and it was loud-we couldn’t sleep in the same room as the heat producing, vibrating, constant sound machine.

Thank goodness we don’t have a dog, because he would’ve been cowering under the bed every time the apnea monitor went off.  And there was no volume button, so we couldn’t lower the evil sound.  Plus, all the alarms were false alarms-when we had an actual emergency, it never went off.  The oximeter went off all the time because it was attached to Lily’s foot, and Lily likes to move her feet.  So anytime the connection wasn’t 100% secured, it went off.  It was a constant world of beeping and screeching and us going crazy because we weren’t sure if it was real or fake.  The monitors had about a 7 or 8 hour battery life for when you needed to go to the doctor, so you had 2 monitors strapped to your shoulder, and a travel oxygen tank, and a small baby in a car seat, and inevitably, the monitor went off while you were driving so, panicked, you had to pull over on the side of the road to find out that your baby was totally fine but you could’ve caused an accident by pulling to the side as quickly and haphazardly as you did.

Some of the stupider comments from AHM:
-When I asked how we were supposed to keep the cannula on Lily’s face (did they provide the same sticky tabs as the hospital did?), they answered: Oh, there’s a slide tab on the back so just tighten it across her face and use her ears.
-Um, won’t she just pull it off? No, they do that. (My child was capable of pulling it off even with the sticky tabs.)
-When asked to hook up the long, 50 foot oxygen tube: Why would she need that, she can’t go anywhere.
-When I explained it was so that I wouldn’t be trapped in one room: So, just leave the baby in the room with the machines and go wherever you need to go.

There were many, many more…but I can’t remember them all.  The company also seemed very confused as to why our cell phone exchanges were different from where we actually lived (mine is NYC, the hubby’s is South Jersey). So when the hubby called to request more supplies, they automatically routed his call to a South Jersey supply station-and then were angry at US, like we had put them out when we explained that the delivery was to New York.

And then the power went out…

Friday, April 12, 2013

Pleading Abject Apologies


With the ability to take Lily outside, reclaiming some semblance of my life and attempting to keep on top of “wifey” duties, I have neglected the blog.  I promise, new entries are on the way and I will continue to strive for better balance.