12.29.2008

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.

12.23.2008

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!


12.21.2008

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.

12.16.2008

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?

12.14.2008

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.

12.12.2008

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....








video


12.10.2008

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!

12.08.2008

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.

12.05.2008

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.


12.04.2008

You Should See the Other Guy





Snoring

Jamie again, "guest blogging" for Amanda while she sleeps up in the parents sleeping dorm, hopefully soundly for the first time in two weeks. Hazel sounded pretty ragged for the first few hours after she came back from the OR, but they gave her a couple of nebulizer treatments -- which actually worked this time since she no longer had a battery in there -- and she settled down quite nicely. That is, except for the fact that she has already managed to pull out one of her brand new IV lines and her A-line -- without actually waking up. Oh well, they say it's not a big deal because they will be able to reduce the number of drips she is getting -- I see two fewer than yesterday, anyway. They also reduced her sedatives, so hopefully she will be up a little bit today. I am just sitting here staring at what without the whole respirator apparatus is starting to look like a very filthy and tired version of my baby.

12.03.2008

Awake


This is Jamie, a very rare contributor to Hazel's blog but you'll see why I am writing in a minute. The OR was backed up so they didn't take her down until 6 o'clock -- but she just came back up breathing on her own, no breathing tube, and a new feeding tube, and crying a really raspy cry. I am writing because Amanda is in bed cuddling with a very fussy (and now sleeping) Hazel. 

She is not out of the woods yet, and she is going to have a long road before she is as good as new, but this will be a really big step for her if she manages to keep from getting reintubated tonight! It is such a relief to be able to hold her in my arms again -- I held her pretty much the entire day Wednesday before her surgery, then they took her away and I have barely been able to touch her since. 

Thank you to everyone all over the country and world who have been sending us prayers and positive thoughts -- this isn't exactly a controlled experiment and correlation isn't the same thing as causation, but her improvements are highly correlated with all of her wellwishers. We are grateful for your continued support as Hazel gets ready to take on her next step in this ordeal (not even sure what that is yet, I've been so focused on getting her breathing on her own.)

What a beautiful, shrimpy little cry I am hearing.

Amazed

I just wanted to say that Jamie and I are both amazed, impressed, overwhelmed, in awe and so incredibly moved by every ones kindness. Before we knew it, Hazels story was posted in practically ever Mama forum there is on the internets. I am astounded by the number of people praying for and thinking about her. I know she can feel it washing over her, like a cool blue light. I thought that I had lost some of my faith in human kind (it happens every now and then) but this experience of having total strangers who don't know anything about me other than the fact that I'm a fellow Mama have taken time out of their day to think about and wish well for my daughter. It means more to me than anyone could know. I cannot say enough thank-yous.

As for those of you who I do know in person and who continue to send us love, peace, thoughts, prayers, hope and grace, (and Visene, crosswords, chapstick, tissues and trashy magazines) you mean the world to me. Your words are being saved for Hazel's future, like a dowry. This Mama Sisterhood (and dada's, too) will be an inspiration to her and the wisdom and love from you all will follow her into her long adulthood. She will be honored to have so many aunties and cousins all over our beautiful planet. We love you all so much.

Tomorrow Hazel will be going to (hopefully) be extubated and have her NG tube replaced with a feeding tube. It's going to be very, very tricky and risky for many reasons that I'm not going to get into here. Suffice it to say that I was pretty much hysterical after the surgeon left our meeting. I'm very scared about the procedure. Hazel has been doing well, but has still not reached the point where we can say she is "out of the woods", so to speak. I want to pass on the following information to all the parents who read this: button battery injuries in children ages 1-5 are on the rise, much of which is because of those talking greeting cards. PLEASE do not send anyone who has children in the home a talking greeting card! I promise you that it isn't wrth it. Also, PLEASE add a quick layer of duct tape to things like the remote that all children play with, but probably shouldn't. Here is some very helpful and important information about what to do if your child swallows a button battery from the National Capital Poison Center in Washington DC. There is no reason that any other kiddo needs to go through this. I am learning that Hazel's injuries are on the very extreme end of things because of how long the battery was left undetected, but battery swallowing injuries are not as uncommon as one might think.

Love and hug your babies tonight, and think about Hazel tomorrow as she is called on to fight an incredible fight. Courage, kiddo.

12.01.2008

Empty


I don't know where to begin. I am writing this as I sit in the Children's Hospital Boston Medical Surgical PICU. Hazel is next to me, but she isn't there. She has been intubated and heavily sedated for five days now. Her little body is hooked into every machine they have in this place. I can start at the beginning, I guess...

On Tuesday November18th, Hazel projectile vomited. On Wednesday the 19th she spiked a fever. On Friday the 21st she began to wheeze in the late morning. She was having a hard time swallowing her food, so she wasn't really eating. We took her in to see the pediatrician and they said it looks like croup; take her out in the cold air, keep her room humidified and it will pass on its own. But, she never developed a croup cough. She never responded well to cold air or humidity. On Sunday night, November 23rd, Hazel started spitting up what little she was eating and I decided that it was time to bring her to the ER.

Her breathing was so loud that they heard us coming from down the hall. She sounded terrible. They rushed us into a room without even registering us and began giving her a nebulizer. She had several that night, as well as steroids. We were admitted and she continued nebulizer treatments through the night. There was still no improvement. Two days later, they shrugged their shoulders and said, "It's just a virus. Go home and ride it out." So we went home. Hazel still was wheezing so loud you could hear it two rooms away. I tried to keep her comfortable so she wouldn't cry or exert herself because the breathing became so much worse. I was feeding her with a medicine dropper because it was all she could swallow at a time.

That evening, Tuesday the 25th she was very fussy, so while Jamie ran out to the store, I decided to give her some Motrin and a see how much she could take from a bottle. When I sat down to feed her, Hazel stopped breathing. She turned bright red, her eyes bugged out of her head and she looked at me terrified. She began to gag and retch, so I thought she was going to throw up. I tipped her forward and started to pound on her back. That is when she started gagging and coughing up blood. Bright red blood. It was foaming and blowing bubbles with her saliva. I don't remember much of what happened next. I called 911, screaming "NO NO NO!!" I thought she was going to die in my arms on the living room floor. I grabbed my purse and we went out in the street. The police came very fast, then the fire truck and the ambulance. Jamie came home at that moment and he followed us to the hospital.


Back in the ER we had the same doctor. Despite the blood on my shirt, on her baby blanket, despite her lethargy, we were told that it was not blood that she coughed up but that it was likely Motrin. We were told how long this doctor had spent in medical school, how even if it was blood it was no big deal. We were told how many things people cough up that look like blood. We were told a lot of things by some very condescending and arrogant people, but through all the talk, no one thought that it might be wise to do some further tests. For instance, a chest x-ray. Like the chest x-ray that should have been done during our previous ER visit and inpatient stay. No one thought to rule out the very severe potential causes of the episode Hazel had at home, or think about differential diagnosis when Hazels wheezing didn't respond to medications or become a cough. Or improve with time. Instead of investigating, they decided to spend their time trying to make us look stupid and hysterical. They continued to administer nebulizers and steroids, despite those treatments being discontinued in our prior hospitalization because they had no effect.

The following morning they were going to discharge us again, send us home with the same line we had been hearing for over a week, "Viruses take time,". A doctor from Hazel's PCP practice stopped by in the morning and gently suggested that perhaps they should take a chest xray just to rule out pneumonia. She was more than a little surprised that no one thought to do it earlier. I was, too. When the chest films came back, it was clear as day; there was a "foreign object" lodged tightly in her esophagus. It looked just like a nickel. I was thrilled! Now they could just pluck it out and we could be home for Thanksgiving! They transferred us to Children's Hospital Boston to have it removed in endoscopic surgery. I ran home for clothes while Jamie rode down with an increasingly lethargic Hazel. Over the past few days, Hazel had been sleeping more and more. One day, she took seven hours of naps.


As Jamie was riding down in the ambulance, he remembered that we had recently noticed that the button battery from our DVD remote had been missing. We had just assumed it was long gone, or sucked into the vacuum or something. It looks almost exactly like a nickel.

In the Children's ER, they also thought it was a battery from the x-ray, and they rushed us up into surgery. I was terrified. Especially when they wouldn't let me be with Hazel as they put her under anesthesia, "because really bad things can happen." She was in surgery for a while, and we just cried and hyperventilated. A battery apparently begins to leak acid after only about an hour. This had been in Hazel for six days. Her hematocrit was low because she had been losing so much blood, and she required a transfusion. Her esophagus is badly burned, and where the battery was lodged burned through the mucosa, through the muscle, and so there is a very thin piece of tissue that they are afraid will rupture. If that tissue ruptures, she will require a major surgery that will involve going in through her neck and/or chest.

She was intubated, heavily sedated and sent up to ICU to recover for the night. The next morning, they attempted to extubate her. I was so excited. They pulled the breathing tube and put her in my arms. Within about thirty seconds, she started gasping. Her eyes bugged out and she looked up at me, terrified. She was reaching her hands up to me and I saw they were blue. When I looked down at her face, she was blue and foaming at the mouth. Time stopped. Someone pulled me back and about fifteen people rushed in. In my mind it was about half an hour, but I was told it was only ten minutes. They sedated her and were able to reintubate. She has been on the ventilator ever since.


Today is Day Six in the ICU. Day Six on the ventilator. Day Six of having my daughter lay there unconscious. I don't have the words or the energy to describe how I'm feeling, so I'm not going to try right now. Suffice it to say that I have never missed someone more than I miss her now. I can't stop crying. I need her back.

We are not out of the woods yet, so please keep praying and sending us healthy, strong thoughts. Thank you to everyone who has already called, texted, emailed, snail mailed, sent flowers, balloons, books, and St. Christopher medals. It means the world that so many people are cheering Hazel on as she fights the good fight.

We love her so much.


fever, i know you've come to take my love
go away 
fever, i know your face just like a dove 
fly away
fever, turn the lights out
take a different road
let us be
fever, i know you've come to take my love
go away
fever, i know in god i shouldn't trust
he's so far away
fever, turn the lights out 
take a different road
let us be
fever, take a different route
travel a different road
let us be
fever, i know you've come to take my love
go away. fly away. go away. 

azure ray- fever

11.24.2008

Back to the Hospital

Well, Hazel was admitted to the hospital last night because she was having difficulty breathing.  It looks like the has croup and a bronchial infection.  The cold air to treat the croup was irritating her bronchial infection.  So, we stayed there last night and will be there again tonight.  She is doing well, and is getting steroid treatment and nebulizers every two hours.  I think she has started to improve, and she is finally eating again.  I have just been too wrapped up in her health to do much posting here, since she has been very sick for a week now.  When she is all put back together, I will update the blog with all the good pictures we have been taking.  Have a good Thanksgiving!

11.20.2008

What Hazel Has to Say

`t x b cvbg7 N JUHN VV6


I guess thats all she had on her mind. Hazel has been super sick with a fever and stomach bug lately. She might be starting to pull out of it, but this is day three of a fever and long, long naps. On Tuesday I was delighted to experience projectile vomit for the first time. Blueberries, too! Poor thing has just been sleeping on my chest all day, every day. We went to the doctor today and she has perked up a little bit tonight, and has been torturing Flossie for about half an hour, so I'm thinking she is feeling better. I'm hoping that tomorrow she will be back to her usual self, and will have more to say to her readers. Anyway, for those who were wondering, thats where we have been. We have pictures and videos to post, so I hope things will be back to normal around here soon!

11.10.2008

Daughter

Everything she sees,
she says she wants.
Everything she wants,
I see she gets.

That's my daughter in the water.
Everything she owns I bought her.
Everything she owns.
That's my daughter in the water,
everything she knows I taught her.
Everything she knows.

Everything I say,
she takes to heart.
Everything she takes,
she takes apart.

That's my daughter in the water,
every time she fell I caught her.
Every time she fell.
That's my daughter in the water,
I lost every time I fought her.
I lost every time.

Every time she blinks
she strikes somebody blind.
Everything she thinks
blows her tiny mind.
That's my daughter in the water,
who'd have ever thought her?
Who'd have ever thought?
That's my daughter in the water,
I lost everytime I fought her
Yea, I lost every time.

Lauden Wainwright III

Hazel Does the Aquarium

Hazel went to the New England Aquarium with her grandparents and her dad the other day.  Hazel and Jamie took the train down to Boston from Ipswich (and we already know how much Hazel loves trains) and they had lunch in the North End.  She loved it.  She passed out cold on the way home, and slept like a champ that night.  Jamie took three quick little videos of her ooo-ing and ahhh-ing and licking the tanks.  I can't wait to bring her back..

No pictures!

Trains!


I don't know where I'm going, but it's pretty exciting!

Lunch with Grandma and Grandpa Donovan

Jellyfish

We need a jellyfish tank in Hazel's room.










Photos from the Week

I'm just posting some pictures that I've been collecting from the past week or so.

Hazel's belly has been looking particularly chunky lately, so we had to get about a dozen pictures of its glorious round-ness.

I love when it hangs over her pants.

Chunky belly, chunky face, wonky eye.  Yum!


Our old friend Steve was in town for the weekend from his home in Portland Oregon.  I have known Steve for EIGHTEEN YEARS.  He had his daughter, Sofia just three months after Hazel was born.  I have no idea why this picture is so yellow...

Hazel is really, really good at playing maracas.

She loves to shake it, shake it, shake it.

We went into Cambridge to have lunch with Jamie one afternoon.  Hazel even put in her adorable felt owl hair clip to show off at the office.  She was a big hit.

But she really just sat in front of the elevators and ate her dads keys.