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.

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.

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

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!

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!

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.

Hazel Laughing

Long Overdue Zoo Pictures

I know these pictures are a bit overdue. A couple of weeks ago, Hazel went to the Franklin Park Zoo in Boston with her dad, Uncle Patrick and Cousin Oliver who is 18 months old.

Hazel and Oliver under the table at Uncle Pat and Aunt Nini's house.

Looking for something cool. See they both have the same hair color?

Pat and Oliver

Pat and Oliver

Jamie and Hazel

Hazel is more interested in her hands.

And Oliver is interested in Hazel.

The kiddos looking at some animal together.

Dancing Together to The Cure

You're so gorgeous I'll do anything! I'll kiss you from your feet to where your head begins! You're so perfect! You're so right as rain! You make me make me hungry again! Everything you do is irresistible! Everything you do is simply kissable! Why can't I be you? I'll run around in circles 'til I run out of breath! I'll eat you all up or I'll just hug you to death! You're so wonderful, too good to be true! You make me make me hungry for you! Everything you do is simply delicate! Everything you do is quite angelicate! Why can't I be you? You turn my head when you turn around, you turn the whole world upside down! I'm smitten! I'm bitten, I'm hooked, I'm cooked, I'm stuck like glue! You make me make me hungry for you! Everything you do is simply dreamy! Everything you do is quite delicious! Why can't I be you? Why can't I be you? Why can't I be you? You're simply elegant!

Still Glowing

It's all we can talk about. There are a thousand angels singing in our heads. It is a very happy time! This picture says it all.

Signed Sealed Delivered

Baby, I'm watching history and you are sleeping upstairs on your belly. In an amazing moment for our country, we have just elected the first black President of the United States, Barack Obama. He will be sworn in before your first birthday, and you will have already lived through a complete transformation in your country and in the world. We did this for you, baby. I have never been so proud of my fellow Americans before. I have hope again, and it feels amazing. Your generation will grow up in a different world. This is even better than when the Sox won the 2004 World Series, and you have no idea what that was like! This is a night of Thanksgiving, a beautiful evening full of promise and optimism. I love you.

Crushing Anxiety

I will be taking a break from blogging until the presidential election is decided. This is an incredibly emotional election for me, my first as a mother. I feel as if more is at stake now than there ever has been before in my lifetime. I am scared, anxious and excited to see what the next couple of days have in store for my country. This is the end of a very long and trying struggle. As far as my family is concerned, there is only one choice for us. I know that Barack Obama is going to be the best president for me as a mother, as a social worker, as someone with a chronic illness, as a survivor of institutional child abuse. I have faith that my fellow Americans will make the right choice. I hope and pray that when I return to this blog, it will be to announce that my country has elected it's first black president, and that my daughter will grow up in a country in which truly anything is possible.