Winter Interlude

Just wanted to post some pictures from our holiday snowstorm.

Our neighbors house! They couldn't even use the front door. Methinks someone should think about some supplemental insulation in this roof.

Finally, Part One

Here are some mediocre pictures from Hazel's first Langford Yankee Swap party in Maine. This is by far our favorite holiday party. Please note Hazel's super cute bow. She was quite the star, despite being passed from auntie to auntie all night long. She held up well like the tough girl she is. The last picture is Hazel picking her Yankee Swap gift. She got mama a "movie night" basket, complete with candy popcorn and a DVD of the Dark Knight. Way to go, Hazel! Much better than the crappy gifts we normally get (or the crappy gifts we normally contribute to the swap). Hazel certainly love opening presents, and honed her skills well this night.

We were lucky to get lots and lots of snow this holiday season, which we love so Hazels first Christmas was a white Christmas. Lucky kiddo. Lucky mama. Sometimes I just can't even believe how lucky we are that we get to keep her... We spent as much time in the snow as we could, but Hazel had a pretty yucky cold, as did mama and it was about a hundred below zero. She had fun catching the snowflakes on her perfect little pink tongue. Here are our pictures from the afternoon we headed out to our farm in a snowstorm to pick up our farm share. We live in the most beautiful part of Massachusetts, I think. Lucky kiddo, lucky mama.

Before

Oh, and by the way, honey- in case you're interested someday, this is a picture of mama when she was 18 and living in San Miguel de Allende, Mexico. I had not seen it before the other day when an old dear friend sent it to me. This is what your mama looks like without all those silly tattoos. But you know whats cool? I remember the moment that this picture was taken- I was sitting on a balcony in Mexico City writing in my journal and it was starting to rain. I can even show you exactly what I was writing because I still have this journal. But the cool thing is that as I was sitting there, unbeknownst to me at the time, I had a little unhatched egg in my young ovary that was YOU. Crazy, hu? I love that I have been carrying you with me for this long.

Working

I am plugging away at getting back to blogging! I have a half-ton of holiday pictures that I have to crop myself out of and de-red eye before I post them. I know it has been centuries since I updated here, but here is an abridged version of our holiday. Tune in later for details!

Langford Christmas Swap in Maine with a lot of "I'm not drunk! You're drunk!". We look forward to this Yankee Swap every year, and can't wait for the long standing family tradition of making the legal-to-drive-but-not-legal-to-drink kids drive us home at the end of the night.

Hazel's scary encounter with a giant stuffed giraffe on Christmas morning!

Chaotic Christmas Eve with Hazel's four cousins, Annabelle, Cecelia, Owen and Lorna- all under the age of two! Holy moley.

Photo-op with Santa in a bar in Jamaica Plain! (Yes, we took Hazel to a bar in Boston on her first Christmas. Meet my family.)

Donabed Christmas party where Hazel's every move was shadowed by a gaggle of tween cousins.

Christmas morning drive to Vermont with a car full of dogs and babies.

Christmas weekend with Grammy and Grampy trying ice cream for the first time, playing with her fifth cousin Oliver (also under 2!), opening lots of presents, and getting serenaded by the uncles.

A tandem Christening.

A double ear infection and blizzard that shut down our New Years Eve plans with friends in Wilbraham, Massachusetts, birthplace of Friendly's Restaurant.

Mama's emotional breakdown and subsequent four day silent yoga and meditation retreat at an ashram in the Berkshires.

Now we're back and trying to gain the upper-hand on life again! Hazel is still having a hard time swallowing certain foods, and we are still being followed by her surgeon. We will be for a long time. The new year promises to offer her some nutrition and speech/swallow therapy. I have been having some pretty annoying vertigo from my multiple sclerosis, and a three week head cold. So life has been going on... While we were happy to see certain events of 2008 go, I was also sad to see the year that Hazel was born blow right through. She is almost a year old, and I'm having a hard time watching my baby go! I had always heard how terrible being a mother can be; oh the sacrifice! Oh the loss of identity! Oh the lack of independence! Well, none of that bothered me in the slightest. I was so scared for motherhood, having spent my life internalizing these negative messages and instead found myself one of the luckiest women in the world. I know I'm a good mama (despite having my baby in a bar on her first Christmas) because I love it so much and was one of the lucky women who fell deeply, unreasonably in love with her the moment I saw her! Being Hazel's mother is a thousand times over the most incredible adventure and blessing I ever could have received. I'm so fortunate that she chose me to be her mama. I can't say it enough, and I don't know that anything I could say could ever communicate what I feel. I just spend every moment trying to make Hazel feel the love that we have for her. The world would be such a dark place without her. I only wish that I had not listened to the ugly, negative voices around me and had decided to bring babies into my family earlier. I think that because of my age, and because of multiple sclerosis, there will only be time for one more. Oh! But the world could use a thousand more Hazels!

Breaking My Promise

I had to come back to blogging really quickly to just say that today is a melancholy day. I noticed for the first time Hazel's body changing from Baby into Kid. Her visiting nurse came today to give her a check-up, and we stripped her down to her onsie to weigh her. Her limbs are getting noticibly longer and thinner, and her delicious thighs are losing some of the chunk and roll. Her belly is flatter and her torso is longer. God, is she long! It's very bittersweet. I'm going to miss my baby so much, but I'm so excited to meet my kid.

Break

We are going to take a break from blogging while we do the Christmas and New Years thing.  I know we will have a ton of pictures to post when we get back, and of course news about Hazel's health.

To everyone in bloggieland, have a SAFE and HEALTHY holiday and we wish you all the happiness and peace in the New Year.  Don't drive drunk!

Medical Updates for Everyone!

As you can imagine, I'm sure, this has been a pretty wild week.  We are still trying to process everything that we went through while trying to get back into real life.  Jamie and I have been working hard to get the word out about the dangers of button batteries with the help of the media relations folks at Children's Hospital and the Ipswich Birth to Three Center.  We are going to be drafting letters to Parents and Parenting magazines, the Boston Globe and some other local papers.  We also may be meeting with our state representative and we certainly aren't going to let it drop with the original hospital that didn't x-ray Hazel or believe us when she was coughing up blood.  But that's all I'm going to say about that craziness...

While Hazel was in the hospital, I had my first appointment with the Partners Multiple Sclerosis Center at Brigham and Women's Hospital.  My doctor there confirmed the diagnosis of MS, as expected.  She also said that she believes that I have had it for quite some time as there are several "black holes" on the MRI of my brain meaning areas of dead tissue.  She pointed out all of the lesions in my brain but had a hard time determining which ones were active because of the contrast dye being administered at the wrong time when I had my scan.  She thinks that the brain lesions happen to be in areas that don't effect my every day functioning so that I may not have noticed any symptoms until I developed this most recent lesion in my cervical spine.  The lesion on my spinal cord has caused all of the troubles that brought me to the doctor last September, and seems to cause the majority of my perceptual symptoms.  MS is really aggravated by stress and lack of sleep, and when Hazel was in ICU I had a couple of days of pretty bad vertigo, but after some rest it went away.  Symptoms that come and go like that are called pseudoexaserbations, and are not true flares.  All of this together can explain my pretty extreme fatigue over the last few years.  Sometimes in the morning my muscles don't even work.  Sometimes it takes all my strength and determination to stand up.  

So, that's that.  I'm going to be going down to Boston every six months for a brain, cervical spine and thoracic spine MRI and to meet with my new doctor.  She also thinks that the regimen of Copaxone injections, alternative therapies (acupuncture, cupping, chiropractic, massage, cranio-sacral therapy, yoga) and supplements (turmeric oil, vitamin D, evening primrose oil, and milk thistle) is good the way it is.  I'm really looking forward to my three-hour MRI.  I bet it's going to be just delightful.

Hazel came home from the hospital no worse for the wear herself.  She has this raging addiction to morphine, so we have been working on that at home with a very detailed plan from the pain management team at Children's Hospital.  We are doing an excruciatingly slow tapper off of Ativan, then we start chipping away at her methodone, and by Christmas we should have a totally drug-free baby!  Last Wednesday we met with Hazel's surgeon at Children's who will be providing her with the follow-up care as long as it is needed.  Because she has been taking bottles and fine purees so well, he said that we could start on some finger foods.  I was so excited because making Hazel's food is something I love doing, and introducing her to table foods had been so much fun before this all started.  

When we got home that afternoon, I put Hazel in her booster and put some Cheerios on her tray while I made some curried potato and peas for her.  When I looked over at her, her eyes were watering like crazy and she was having a hard time swallowing.  I took the Cheerios away thinking that maybe they were too dry or big to start with.  I cut up some really soft pears into tiny bits to give her next, and she shoved them in her mouth.   A moment later, I heard a loud gurgling high in her throat and saw her choking.  Everything that happened over the last month came rushing back; watching her stop breathing, coughing up blood, the wheezing and strider, breathing and swallowing problems.  I ripped her out of her seat so fast and threw her over my shoulder, whacking her on the back.  She coughed up a bunch of saliva, Cheerios and pear bits.  It had never reached her stomach.  

I called her surgeon and he told me to stop feeding her, and that he wanted her to come in for another barium swallow study as soon as possible.  Clearly there is a narrowing of her esophagus, likely due to scar tissue.  It's frustrating to take a step back, but I keep reminding myself that it isn't life threatening now and that Hazel is going to be okay.  We may have a lot of doctors appointments, a lot of tests, a lot of procedures over the next few years, but this is not going to kill her.  This last incident also made me realize how close to the surface my trauma still is, too.  I need to find a way to deal with this.  Soon.  We were ripped from the ICU into the middle of Christmas madness and it's so easy to just pretend to move on with life.  I just can't freak out every time Hazel coughs.  It isn't fair to any of us.

On a positive note, Jamie is still healthy!  He better stay that way, too.

To Prove That Hazel Is Also My Daughter

Hazel's mama in 1976

Gesundheit!

Amanda and I have been playing the "Sneezing Game" with Hazel for a couple of months now, where we fake a dramatic sneeze, varying the pauses in "ah... ah... ahh... choo!" -- she loves it, but used to sort of stare and wait through the "ah"s and then laugh at the "choo!". Today I noticed that she now finds the "choo!" a bit trite and "so November", but now she laughs hysterically at the "ah"s and stares at me during the "choo"s. A sign of increasing sophistication? Random chance?

Residue

Finally, home is home again. We are still pretty traumatized by all that went down, and glimmers of how close we came pop up frequently. Just now as I opened up our blog to make this post, I realized that the last batch of pictures that I posted could have been the last pictures that I had of my daughter. I stare at them and think, these could be the pictures that I spent the rest of my life looking at, wondering what she would have looked like all grown up.

One of the days we were in ICU (they all blend and mix together- already our memory has the twists and holes that traumatic memories have) this reverend from the pastoral care department at the hospital came in. Now, I'm open to some spiritual support or what have you, so it wasn't unwelcome or anything, but I'm also just a tad bit busy staring at Hazel and watching each breath on her ventilator come and go, willing her to heal. So this woman comes in and introduces herself and she has like 8% of my attention as she is talking about something or other and I'm mostly humoring her because I used to be a medical Social Worker and I know how hard it is to impose yourself into someone elses crisis. Until she says, "You know, sometimes the blessing in these things happening is that we learn to not take things for granted as much any more." This is the part where I am this close to tearing her head off. I said to her, "I had to go through a lot of fertility treatments to get my daughter, and I was diagnosed with a chronic illness three months ago, so I have not really been in a position to take my baby for granted," which I thought was very diplomatic, all things considered. Then I turned my chair so my back was to her and made it clear that I was too busy watching (with quiet intensity) Hazel's little chest rise and fall to continue to humor her.

I am in love with Hazel beyond all reason. I am lucky enough that I have felt that since the moment I met her gaze. I have watched every perfect cell division in her beautiful little body with awe and wonder. I can't tear myself away from watching her sleep. She and I were made for one another, we fit perfectly. Every love song written is about her. For the rest of my days I will unfortunately carry the image of her turning blue, foaming at the mouth and reaching for me in terror. Of her reaching over the surgeon's shoulder screaming for me as he carried her off to the OR. Of her intubated. Of her hands tied to the bed. Of her coughing up bright, terrifying blood in my arms alone at home. I will never forget the hollow sound of my screaming, or what my husband looked like when he was broken, wracked, curled in a ball in the PICU hallway. I will never forget the feeling of desperately wanting to leave, to walk out of the hospital so that I would never feel what I was feeling because it was simply intolerable. Wandering with dizzy eyes because everyone said, "go get a cup of coffee," but feeling the physical pull back into her room like a rope around my waist. The nausea. Her thighs losing their delicious baby fat, wasting away, her limp arms and neck, her swollen ankles. The constant beeping. The nurses quiet head shaking, clucking, shushing. The doctors hugging me. Every moment makes my throat start to tighten up like hers did.

I am not having nightmares, but certainly flashbacks. Certainly this weekend there was a measure of denial, as we get back into our routine as quickly as we can. But Hazel is different. She continued to grow the almost-month that she was sick. Her hair is longer and curlier, her voice is different, and she laughs at everything all of a sudden. Our time stopped, we lost a month of our lives, but she grew on.

Thank the heavens for our friends, who have been kind beyond measure, for strangers who have been generous beyond my wildest expectations. For pranayama which has let in all the goodness and light and rid me of poison. For acupuncture and the amazing sister-mama who has started healing me with it. For massage because human touch is divine in it's ability to repair any damage to the soul. For those asanas which open the hips and shoulders and keep me standing. Thank the heavens for my husband who is truly my partner and the moment that I felt we were too drawn to support one another was the moment that I thought I might die. We have our girl. Our bright, shining, funny, sharp, silly, beautiful, warm, perfect, spectacular, brilliant, stunning girl who is our moon, sun, star. From here to the sky and everything in between I have never taken her for granted, and plan to spend the rest of my days bathing in her perfect breath.

Some Pre-Intubation Pictures I Never Got Around To Posting

I need some cuteness. These are some pictures of Hazel the week before she got sick that I never had the chance to post. Now that Jamie and Hazel are napping together in the crib, I have a moment to myself. I do love seeing my little family together, safe and sound. I'm so anxious to get back to our little life and our little house (hopefully today...we have our fingers crossed).

Jamie and Hazel in the tub.

Home with a fever, sleeping and playing with mama.

Play date with Nathan and Jillian, the day before Hazel got sic. This was the last day that we went out and had any fun! It was ages ago! I know it doesn't look like Nathan is having very much fun here, but he was.

Apple Bottom Jeans

My guitar hero.

These pictures are from Hazel's first time swimming!  She didn't really do well with the ocean this summer, because she was so little and the waves were so big and it was so friggin cold.  The pool at our local YMCA though is perfect and she took to it like the pices she is.  I got these pictures and 16 second video in before the staff came and told me to shut it all off.  I guess they don't allow cameras in the pool area which is great to keep the perverts away, but is too bad for us because Hazel looks so adorable in her little swim diaper and chunky thighs....

Time and Hazel Both March On

I wanted to let everyone who has been following her story with such interest, kindness and generosity of spirit, that Hazel continues to make big strides. This is Jamie posting again, because Amanda is spending her first night at home since November 25th -- and (hopefully) her first full night of sleep there since November 17th -- the night Hazel caught a flu bug that she got over just in time to get ahold of the battery. I spent the last two nights at home, first for me since the 23rd, I think both of us could only go home now at all because the deafening silence there isn't permanent, and we will be bringing Hazel home in a few days. (Yes Hazel is recovering from this way faster than we are.)

Anyway, Hazel has been more and more like herself the last few days -- and then some (see below) -- she is off of her morphine now (only methadone and Ativan left to go), she pulled out her NG tube herself Monday night (which is ok because she's been drinking from a bottle just fine), and she ate her first solid (pureed) food this afternoon with Gusto. She has been charming everybody around here, nurses are coming by to take her around the floor with them all the time, and I half-suspect one or more is claiming her for their own :)

Something that I guess I should have expected, since this has been going on for over 6% of her young life (sorry can't help myself from constantly making calculations) but that still has taken me a little bit by surprise, is that Hazel has continued to grow and grow up even in the few weeks this has gone on -- she looks older, acts older, has hair that is getting curlier all the time (I think they're permanent -- her hair still has its curls even after we finally were able to wash her up), she's starting to understand words and what is going on around her, she is starting to get more "jokes" and is starting to display her first bit of empathy (offering up to one of us whatever she is enjoying chewing on) and she has a new gasp of surprise/delight/excitement that I want to see over and over again. I guess some of these changes were happening even while she was sedated and intubated, but it was hard to notice with all the tubes, sedation and swelling.

Although Hazel seems to really like all the medical personnel giving her attention (stranger anxiety? what stranger anxiety? we'll see if it persists beyond her Ativan regimen), I think she is starting to get impatient with the whole hospital thing, and I can't wait to take her home.

Look out World, because Hazel is back, and she's coming out strong!

Survivors Guilt

Today my little family moved up to the Surgical Inpatient floor and out of ICU.  This was such a huge step, and I have finally exhaled.  As if we weren't freaked out enough after our mediastenitis conversation with Dr. Ray-of-Sunshine the other day, the surgeon who removed the battery from Hazel the night we came to Children's (one million years ago) came by to visit her.  He told us then how scared he had been when we first walked in, how he didn't think that she would make it, and how this sort of scenario is the one that he dreads.  I'm sure glad that he didn't tell us that before now.  

Leaving ICU was very hard for me.  I'm so conflicted, feeling so joyous and blessed that we are able to walk out with our Hazel at our side, but I'm so sad about leaving all those other babies behind in there.  I wish we could all walk out together.  There was one room I walked by every time I went in or out of the unit.  The baby in the bed was so tiny that you couldn't really see her underneath the pile of blankets and tubes.  I only glanced in a couple of times before I quickly looked back at the floor, ashamed that I violated someones privacy like that.  I have no idea who this little girl was, why she was there, or what her prognosis was.  I can only speculate that it was not good.  She was intubated when we arrived and her whole room was already decorated with all of the comforts of home.  When we left, she was in exactly the same place.  She was often alone in her room, as I'm sure her parents had to continue working and perhaps caring for other siblings.  Sometimes a woman was sitting there by her bedside, but she was unable to hold her.  The thing that kills me is that even though she was this tiny baby, under a year, she was in a bed instead of a crib.  I can only take that to mean that there was no chance of her waking up and becoming more ambulatory anytime soon.  Today on my way back from the bathroom I looked  for the hundredth time at the paper letters that someone had taped to the door of her room.  It said, "ALOHA".  It was only this morning as we left ICU behind that I realized that aloha means both hello and goodbye.  I have cried so many tears for that little girl and her family today.  I don't know that I will ever forget her, as she is forever tied to Hazel's life.

Her Miraculous Recovery

Here is one for the record books, folks. First, Jamie and I need to say that we have been stunned and amazed by everyone who has been following Hazel's story. We went from about 21 hits a day on this blog to about 1,800 hits per day. We have prayer circles going for us in Peru, South Africa, the UK, Japan, Mexico and of course all over the States. A convent in New Jersey, a church in Tuscon, and people in just about every state have been pulling for my kiddo. We have been receiving packages of books, stuffed animals, blankets, balloons, flowers, and toys here at the hospital from people we don't know. We have been contacted by reporters wanting to tell Hazel's story and to help us educate other parents about the dangers of these batteries. Today, a nurse from the Emergency Department here at Children's Hospital came up into our room. She said that a friend of hers had sent her the link to Hazel's blog, and she recognized the johnny that Hazel as wearing as belonging to this hospital! She came up to meet her and to give us A Light In the Attic. When I spoke to Hazel's pediatrician, he had already heard the update on her condition from some of his other patients who had been following the story. It's all so incredible! It just goes to show that once you're a mama, you're every ones mama and all babies are your baby. I feel like there are thousands of mamas in the world, holding Hazel as if she were one of their own. What a lucky girl...

So, it is only now, that Hazel is out of the woods that we have been told how serious her condition actually was. Not that we thought it wasn't serious to begin with, but we thankfully were not told how close to Death's Door she truly was. When we came into the ER here at Children's, and for our first couple of days here, Hazel had an infection in her chest around her heart and lungs called mediastinitis that according to our surgeon, kills half of all people who develop it. We also were only recently told that she had microtears in her esophagus so that it was open to her chest cavity. When I think back to the condition she was in when we came into the hospital here, it terrifies me. I don't think I realized how close we were to the end. Her heart rate was in the 200's, she was on fire and so lethargic that it was difficult to rouse her at all. The surgeon told me about a four-year old boy who had a AAA stuck up his nose for four days, and he lost his whole nose. He said that if you just hold a battery in your fist for a few hours that it will damage the tissue because batteries are designed to leak. After it is removed, the electrical current is still damaging the tissue for some time, with no way to stop it.

So, once the battery was removed from Hazels esophagus, the most severely damaged portion was where the battery was resting. It formed something called an esophageal diverticulum, or an outpouching of the tissue. (Google it to see tons of gross pictures.) This tissue is very thin and delicate and can easily result in a rupture of the esophagus or perforation. The problems that can result from something like that are legion, as one can easily imagine.

The part of this whole thing that is so miraculous is that not only did she come back from the brink of death several times, but her recovery from her injuries since being extubated is truly extraordinary. When Hazel had her extubation/bronchoscopy procedure the other day, the surgeon decided to not look in her esophagus because of how fragile it was, but also because he would not expect to see much change in only one week. He thought that they might go check it out in a month or so to see that things were starting to heal up properly. So today Hazel had her barium swallow to make sure that the microtears had repaired so that she might try to eat from a bottle. You can imagine all of our shock and surprise to hear that not only had the micro tears healed as expected, but that there was no evidence of any esophageal diverticulum. After just over one week, The worst of and most precarious of Hazel's injuries appears to be gone. Incredible, no?

So, Jamie and I aren't really the religious types. We don't have what some might call a "strong faith in god", but one thing I have always believed in is the power of prayer, the strength in numbers, the ability for thought to change human lives. Jamie is starting to come around now, too. After seeing the recovery she has made observable in her behavior and also now on film, I think he might be of the mind that there is something out there, whether you call it god or collective unconscious or something else. Someone was looking out for Hazel; an angel, a spirit, god, mama-love, the brilliant science that saved her, the medical professionals that worked so hard on her behalf. Whatever it is, it worked.

But the thing that makes me pause here is this; there are thousands of kiddos in this hospital just as beautiful and funny and loved as Hazel. There have been just as many prayers and healthy vibes and meditations and healing thoughts for them, but not all of them have been as lucky as us. We have been unfortunate enough to see the deaths of a few kiddos since we have been here in PICU and we have seen people's babies pass on. Just as I am writing this, someone called a code and all of the docs went running down the hall to another room. It breaks my heart that right now someone is as scared as I was when Hazel stopped breathing. I don't understand why we were saved and other babies weren't. I will never understand it and I refuse to have it be be something simply brushed off as "God's Will". It just isn't fair and my heart breaks for them. I wish I could still be ignorant about this whole little PICU world here. We were here for ten nights, but there are families here for weeks and months. Families that come here every month and stay for long, long periods.

Anyway, I just don't think it's fair. Jamie and Hazel and I are so blessed, so thankful and so lucky to have each other for another day, but I can't help but think about the rest.

I can't thank you all enough for caring as much as you do about my baby.

You Should See the Other Guy