In My World

In My World

In my world when I hear the word flush I think of a syringe, not a toilet.

When I hear the word tank I think of oxygen, not gas.

When I hear a cough it’s time to get out a burp cloth, sometimes two, maybe even three. The tongue curls and watch out, I hope it doesn’t get on me!

When I say I need an extension I know what you think, I’m trying to make my hair long again and be 23. No, that’s not what I’m saying. I’m saying Emma needs to eat.

Other moms want their babies to keep stuff out of their mouths. I am constantly hoping that mine will put something in.

If the electricity goes out you might think, “oh, this will be fun.” I think “crap, I hope Emma’s pump is charged” and “it’s a good thing we’ve got extra tanks”.

A trip to the store requires lots of things: a tank, a button, sometimes a pump, a handful of burp cloths, and oh yah, don’t forget the toys (remember, the ones we want her to put in her mouth).

The one you might think is oddest of all is when I say I have to “plug her in”. I’m not sure what you think that means, but that means Emma has to eat.

If you come to my house and you hear a beeping noise, please don’t be alarmed.

It’s not the smoke detector, it’s Emma’s pump. One beep means she’s done eating. If it’s two, it means she’s out of food. What if it’s three? I don’t know, don’t ask me. If it’s three let’s go get out her owners manual and we’ll see.

In my world when I hear the word button I’m thinking about Emma’s feeding tube, not your jeans.

When you see a onesy you think “oh, isn’t that cute”. I think, “yah those don’t normally work out”.

When I hear a baby crying I know Emma is tired, because she is normally very happy, the happiest baby you’ll see.

When I see a baby crawling or walking I think “When?”

When I see a baby eating I think “When?”

When I see a baby being carried with no tubes attached I think “When?”

But more importantly,

When I see another baby I think “She’s not as cute as mine”

When I see another baby I think “She’s not as strong as mine”, and

When I see another baby I think “She’s not as happy as mine”.

NEHI Diagnosis

On April 28, 2011 I brought Emma to the emergency room because she wasn't feeling well and was getting pale. Within the hour Emma was put on oxygen and airlifted to DHMC. Even after 13 days of tests there, the doctors still didn't know what caused her respiratory distress. The picture to the left was taken during this hospitalization.

A lung biopsy was conducted in June 2011. The biopsy has been sent to at least two hospitals across the country for analysis. The initial results from Emma’s doctor indicated that Emma has “NEHI pathology”. When asked whether she has NEHI the answer is “she has NEHI pathology”. I think a simple yes/no answer is not given in the event that there are other yet to be known condition(s) unrelated to the NEHI that would complicate a prognosis for her.

NEHI is short for Neuroendocrine Hyperplasia of Infancy. I have no medical background and the following may not be 100% accurate, but the following is a brief explanation of NEHI as I understand it. Everyone is born with neuroendocrine cells. It is my understanding that kids with NEHI either have too many neuroendocrine cells in the lungs airway, the cells reproduce producing too many of these cells, or they were born with the appropriate number of cells and the cells never decrease.  Generally, the number of these cells decrease naturally. The cause of NEHI is unknown. In general, most kids with NEHI outgrow their need for oxygen at some point.  

There is little research about NEHI, its’ cause(s), prognosis, etc. The chILD Foundation was established to "to provide support, education and hope to families affected with a pediatric interstitial lung disease and to advocate and raise funds for scientific research." Click Here for a brochure they have prepared on NEHI.

There is not a lot of research on NEHI, prognoses, causes, etc. More important than knowing the cause of NEHI is the hope that one day Emma will be off oxygen. The hope that one day I can carry Emma upstairs to bed without holding Emma in one arm and the oxygen regulator in another, one day not having to hook up her pulse oximeter while she's sleeping, one day being able to take her for a trip without her oxygen tank, and one day being able to go for an outing without being asked "what's wrong with your baby". 

The photo to the right is the Emma we all know and love. She adores her big sister. She is sweet. Everyone always comments on her hair, which we all think is going to be red. She is weary of strangers. And,she is a happy baby who rarely fusses (except when she's tired, someone she doesn't know well tries to get too close to her, and at doctors visits).

Hidden Blessings, Evacuating our Home from Hurricane Irene

written September 16, 2011



On August 27, 2011 my family packed up a couple suitcases, some of Emma's medical supplies, and a tote of "emergency supplies" and headed over to my husband's parents house. There was a hurricane going up the east coast that was supposed to make its way through New England. They were predicting heavy winds and rain in our area. We live in a very rural area, and we thought it was likely that we would lose power for a while. We put away stuff that was outside, anticipating, at most, garbage cans and loose toys getting blown around. If it weren't for Emma's need for electricity because of her being on oxygen and her feeding pump, we probably would have stuck it out at home.

VT107 between Stockbridge and Bethel.

On the afternoon of Sunday, August 28, the rain was pretty steady at my in-laws, but nothing out of the ordinary. "Maybe we'll just go home this afternoon", Brian said at one point. It wasn't until late afternoon that we started hearing about the flooding going on in our area on the other side of the mountain.







Over the next couple days we started hearing more and more devestating stories of flooding in our area. Worst of all, we had no idea how our house was doing. We heard that in our little village it was "awful down there", "just terrible", "houses were knocked off their pillars", and "water up to the counters". We were hoping for the best, but bracing ourselves for the worst. At this point, the news channels were not even covering a fraction of the damage across the state. Later we would realize that this was simply because people couldn't get to these places. There were thirteen Towns literally cut off from any access outside of their "island". One of these towns was my town, Stockbridge.

One of the houses in our Village that got lifted, moved,

      and set back down.

Wednesday, August 31, there was finally a route to access our house. What would normally be a 45 minute trip home took 2 hours. I cannot even put in words what it felt like waiting for Brian to call to tell me what the house looked like. The girls and I were out for a walk when we got a voice message from him saying, "You won't believe it, but the house is dry!" He was right about one thing, I didn't believe it. I wasn't going to believe it until he came back and told me in person. I was just dreading the phrase after this sentence... "The house is dry, but..." When he got back he reiterated that the house is dry, but the shed and camper have mud inside. The boat also floated from the back yard to the front yard and into the neighbor's truck. It really is amazing. The houses next to and behind ours had water inside and their carpets were wet, but ours did not. A hot tub at the end of the road was blown off the porch and carried by floodwaters at least 150 yards, but Catie's little red wagon was still on our porch. There were houses on the river side of the road that were lifted off their sonotubes, moved, and set back down 20-30 feet away, but ours was dry. Our garden was matted down, the fence was offset at the corner post, there was debris around all sides of our white picket fence in the back yard, but the house was fine. As I write this three weeks later I am still truly shocked that our house is dry.

Initially, there were three factors we needed to wait on in order to go back home: (1) electricity, (2) water, and (3) access to/from the house. Electricity was the first to get restored. Many in our village did not get electricity back as soon as we did. For any house that sustained water damage, the electricity was turned off until an electrician inspected the house to ensure it was safe to turn it back on. Our water comes from a spring down the road where it is pumped to our Village. The pump house was destroyed, as well as some pipes of this system. Water was restored a couple weeks after the storm. Three weeks later, there is now access to/from the house.

The main road in our Village.

I have been back to the house once in the last three weeks. We only went straight to our house and back to my in-laws. I say "straight to our house" but, really, it wasn't really a "straight" route. The trip still took two hours. We didn't go outside of our little village to look at the other damage as there were lots of people out working on the roads and it didn't feel right to be "site seeing" the destruction.

It is now almost three weeks after the storm and there has been a lot of progress made to the roads in the area. The major east-west route across Vermont, Route 4, was initially closed to through traffic from Woodstock to Rutland. This is a distance of 30 miles. This may not sound like a long distance, but this is approximately 1/2 of the east-west dimension across the middle of the state. The major route in/our of my town of Stockbridge is VT100. This road was closed. To the north of VT100 is VT107. This road was closed. About a week and a half after the storm they were allowing 1 hour of traffic in the morning and evening through sections of Route 4. As an engineer I do understand that it takes a while to build a road, but, as a homeowner, I am still anxiously awaiting being able to get home in 45 minute.

In addition to the State roads, many Town roads are in a state of despair as well. The road to my girls daycare was demolished. I know this sounds like a strong word and exaggeration but I assure you, there are sections that have literally been demolished.

Prior to August 28, if I saw the pictures that I've seen in the last three weeks but under the picture said North Carolina or Louisiana, I would have thought, "oh, that's too bad". Now, seeing those pictures with the caption of Stockbridge, Vermont or other towns that are close to my heart gives me such a stronger compassion for what this means to a person that lives in a community where their town was broken. I cannot pretend that I know what it would feel like to have been one of those not as fortunate as we were. I cannot even phathom what is going through their heads.

I see the pictures over and over in my head. Pictures from local news, national news, Facebook, and images of my road and neighbors houses. I don't enjoy seeing these images, but I cannot stop thinking about it. I always thought Vermont was located such that we miss all the major natural disasters. Usually the worst weather we have are massive snow storms. Once in a while there will be a tornado warning somewhere in the state, but I have never encountered anything like this.

They are comparing this event to the 1927 flooding. I have not seen any official comparisons between the two. It really doesn't matter which one is officially "worse". This is still the storm we will never forget. Although the house remained dry, we are lucky we got out when we did. We heard from our neighbor that they were evacuating people in our village in the middle of the storm.

I would obviously prefer that Emma did not need to be on oxygen and a feeding tube. But, if she didn't have these needs we would have stuck out the storm at home.  It is a hidden blessing that we left because of Emma's medical condition. If we hadn't left we would have ended up leaving during the midst of the storm. Where would we have gone then? Would we have made it to Fair Haven? Where would we have been stuck for days with a five year old and thirteen month old? How would this story be rewritten if we hadn't left?

Tomorrow we will be going home again, three weeks after Hurricane Irene. Our lives will not be back to normal, but it will be one step closer. My route to work will be much longer for a while. The route I usually take is one of the hardest hit roads. Other roads will not be the same for a while either. Eventually, our lives will get back to what I consider to be "normal".