Sorry.

One hand typing here. Crazy life. Busy busy. Hazel is fantastic and amazing and beautiful and perfect. She is the best and most loving and helpful big sister there ever has been. Not a trace of jealousy or anger at all. She is talking full sentences all the time and busy as can be. She made a great escape from her crib, so we took her to Ikea to test out all of the new big kid beds. She picked out a red one with a dog and cat on it and has been sleeping wonderfully at night but not so wonderfully during the day. Elias is still getting up twice at night to eat which isn't so bad considering he has been eating almost every 2 hours in the day. He is chunking up nicely, weighing in in his 8 week appointment at a whopping 11 pounds, 13 ounces- more than a pound heavier than Hazel at the same age. He is stuck to me all day, every day and we spend a lot of time sitting around. Everyone comments on how clingy and cuddly he is, but thankfully learned this month to sleep in the co-sleeper instead of on my chest at night. He is like glue, and kind of cranky most of the time. He is also very hot and sweaty! The other big news is that we are the most recent victims of the recession-almost-depression; Jamie was laid off because of restructuring in his company the week he returned from paternity leave. It's been a month now with both he and I at home and we are still reeling and trying to negotiate this whole, huge, scary unknown but hopeful that we will land on our feet someplace better than where we were. Keep your fingers crossed. It's a mixed bag- scary to have things be so uncertain with a new baby, but lucky to be able to spend so much time together when the kiddos are little. We will see.... For now, it's time to go to bed because Mister will be up in a few more hours, hungry as a hippo, and Hazel will be up at 6:00 screaming, "DADA! COME!"

Testing out one of the beds at Ikea. This one was a no-go. We decided to go with the Kritter model because of the "picture of the dog and cat. On it."

Grouchy Elias. In a vest.

Crabby Elias. In a hat.

Hazel's haircut with pigtails.

Two minutes ago, crashed out on dada for a change, showing off the chunky wrists and pudgy cheeks.

Ending

Dear Hazel,

This is hard for me to write. Today I'm 39 weeks into this terrible pregnancy and it may be ending today and you will have a new brother in the house for the rest of your life. It's never going to be the three of us again. I don't do pregnancy well- I hate it, in fact. I hated being pregnant with you, and I hate being pregnant now, though this is a hundred times worse than before. I'm in much more pain, sleeping even less, have a bigger belly and no muscle tone left to hold it up. It's pretty awful. But the worst part of it all, and I cry every time I think about it, is that I have not been able to give you the attention and love and time that I want to. It's hard for me to pick you up, I have no lap to sit on, you watch a lot of TV these days, and I can't even get on the floor to play. It breaks my heart, because you are so amazing and incredible and all I want to do is focus myself entirely on you.

You are going to be two years old in a few weeks, my girl and I couldn't have wished for a better kiddo. Your dada and I are in awe of everything you do, and after you go to bed at night, he and I swap stories about all the cool, funny, brilliant, sweet things you did that day. You talk constantly, and say such funny things, and you have got to be the happiest kid I've ever met. You are totally fearless; I can't think of a single thing that you are afraid of in this world. Scary for me, but I know it's going to serve you well in the future and that it's a sign of great intelligence to be so curious and outgoing. You are very physical and kinesthetic; we go to a tumbling class at the Y with your friend Bea, and the two of you tear the place up. You are obsessed with the older kids who are training in there at the same time as you. Kids on the parallel bars, kids climbing ropes 30 feet into the air, doing back flips. You watch them intently, then march right over to try and do it yourself. No fear. You love watching the show Yo Gabba Gabba, sing along to everything, and are on your feet dancing away through the whole thing. You love your friends, and talk about them, kiss and hug them, and get so excited and happy to play with them. You dance. All the time. You climb everything. You run and jump and fall down and crack yourself up. In fact, you never, ever cry when you fall. You love swimming in the Y pool with your dad and recently you love snuggling up (alone of course, since you hate being contained in any way) in the big armchair with your blanket, whom you recently bestowed with the name, "BEEKO". And oh my goodness you love to draw. You call it "eyes" because we showed you how to draw a face with "eyes, nose, mouth, head, ears, hair", etc. You get very frantic when you don't have a chalkboard, paper, crayons, markers or something nearby with which to draw eyes. You even draw them on the glass door when you shower with dada in the morning. You sleep with your mini Magna Doodle, the best four bucks I ever spent. You crack me up.

Since I've been so disabled and lame the last couple of months, and since you are so social and independent and active, I thought it was time for you to go to daycare twice a week. We found a fantastic home-based place here in Ipswich on the recommendation of a friend, and I signed you up for two days a week, hoping to get you settled in there before the baby comes. We took you there for an informal "interview" on a Saturday morning, and you immediately marched off away from us, in a strangers house, and started to play. When we left about twenty minutes later, you threw a fit. I knew you would love it. I started slow and put you in for a half day at first. You did great, of course and again threw a fit when I picked you up. You have been for a few full days now, and just love it. I'm so happy, but it's bittersweet. Every milestone is a separation, and this was yet another one that flew by without a chance to even process it. Per usual, you are off and running. It's a beautiful thing, and I wouldn't have it any other way, but I miss you, too- terribly.

I'm not one of these mothers that wants you to cleave to me, live with me until we are both elderly ladies out of some selfish need to OWN your soul. "Your children are not your children," and so forth. I know that. I want you to be exactly who you are. I want you to go out into the world whenever you feel you are ready and I want you to see and do everything. I want you to work a totally crappy job and try to support yourself on minimum wage. I want you to get so drunk you swear you're never going to drink again- several times. I want you to have beautiful lovers that whisper secret things in your ear that will make you blush, and I want you to get your heart broken...and break a million hearts. I want to see you discover your path and get so excited about whatever it is you were put on this earth to do. I want you to live in a roach-infested, peeling-paint, cracked-window, too-hot, drafty old apartment and love it because it is yours. I want to see what you do to that apartment to recreate your idea of Home. I want you to learn, and travel, and stumble and pick yourself up because you are one of the toughest people I know, and you have already been through so much. I want to see you get mad after paying for a terrible haircut. I want to meet you for lunch and listen to you go on and on and on about all the exciting things in your head, too wrapped up in it all to even ask me how I am. I feel so blessed that I can watch you do these things and that your dada and I get to be the point from where they all started. We love you more and more every moment of every day to the point that we think we couldn't possibly love you any more. But we do. It's crazy.

(I can hear you downstairs right now saying my name, looking for me and my heart is literally melting at the sound of your voice. Perfection.)

Soon, as in this week, you're going to have a brother, and I'm sorry. I know it's going to be hard for you, but I'm hoping that in time the good will outweigh the bad. I'm hoping that your heart opens and it will be another person for you to love and depend on, another person to anchor your home, a person you can turn to when you can't turn to us. I hope that the two of you will have each other after you have moved on from your dada and I. In the best world, that's what will happen. I hope for as much. I hope he will be the best man at your wedding, and will be a playful uncle for your kids. I hope you'll love each other, and that you someday get over the "When do we send him back?" phase of your relationship. It's a wild experiment, you silly wonderful girl.

Things went by too fast, my love. I enjoyed every damn second of it, and have felt blessed from the moment I met your eyes. I've never taken you for granted, and I pray that I never do.

So full to bursting with love for you,

Mama

Moona es UP!

At 21 months old, some of Hazels words these days, though she adds more every day.

cup

flies (any bug, always plural)

moie (more)

cai (car)

truck

vroom

train

choochoo

up

down

nite nite

BIE!! (goodbye)

hi.

no.

yup.

thanks.

peeze (please)

mama or mommie

dada

butt

dis (this)

dat (that)

GABBOO GABBOO!! (asking to watch her favorite show, Yo Gabba Gabba)

hep! (help)

oh kay oh kay (said under her breath whenever she is nervous or concentrating)

ohhhhh nooooo!!!! (very dramatic)

boook (book)

poop

fart

dada's cup (beer bottle)

chubbies, or chow-bies (berries- took us a while to figure this one out)

cheese!

moona (moon)

Buba (our dog hector)

Other animals: cat, dog (and they say "foof!"), hoss (horse), baaaa (sheep), tur-tul (turtle), gucks (and they say "kak!")

hut (hot)

wa-wa (water)

wet

abble (apple)

noodle

eyes

nose

har (hair)

head

hat

go!!

brush (as a verb!)

pool

shower

ball

dirt

blocks

trees

pints and shit (pants and shirt)

sock

shoes

boots

why?

nice... (used for her favorite clothes, lotion being rubbed in, and stickers on her arm.)

bike

weeeee!!!

food

ice

bee-bee (baby, particularly important at this juncture)

P.U. (always said with a sniff in the direction of the offense, usually used to point out when someone farts.)

boobs (which she likes to point out on others)

beech (beach)

monies (coins)

wa-waruash (walrus)

sup (syrup)

dirt

house

beach

trees

one, two, three

four

five

all done

all gone

Hay-hay (this is what she calls herself)

She has recently been stringing some of these words together into short sentences and its so funny; "Is it hut? Noooo.....it's not hut" "Where mama go?" "The moona is up!" "Moie chowbees peeze." "Oh, Buba butt...P.U."

It's fun to focus our energies on all this good stuff. Tonight, actually right at this moment, is the one year anniversary of Hazel being rushed into emergency surgery to have the battery removed from her esophagus. We are, needless to say, still quite traumatized by the whole experience, and still extremely angry at Beverly Hospital. I expect that will only fade with time. Meanwhile, we are very focused on everything we have to be thankful for right now. Our daughter was not expected to live, and our family was almost destroyed one year ago this week, but she did and it wasn't and I'll never be able to forget how blessed we are.

Now if only I could take an Ativan with a wine chaser to fall asleep tonight.....

No Excuses

I have no reason for not blogging, other than the fact that I'm pregnant and exhausted. It ain't easy chasing after a crazy toddler with a sandbag strapped to my gut. And this second pregnancy thing....man, I have no muscle tone or something because I'm carrying so much lower and feel always like I'm ten weeks further along than I actually am. I guess the big news is that we found out we are having a boy, which seems so strange and foreign after having a girl for almost two years. He is an active little guy, just like his sister and we are excited to meet him in February (or, late January hopefully!). Other things happened this summer; it rained for about six weeks straight, we went to the beach a lot and Hazel proved to be as daring in the waves as she is in everything else. We took a vacation in Maine, and spent a week in Vermont. I slept as much as I possibly could. Nothing really Earth shattering. I got a new computer, which has probably slowed me down more than anything. I'm a new convert to Mac, and still trying to figure everything out. I haven't even tried to upload pictures from my camera all summer. I'm a mess! Wondering how realistic this blogging thing is going to be after the new little one arrives.

As for Hazel Porkpie, she is fabulous. Perfect, Hilarious. A pistol. Whip-smart. She is talking non-stop and incredibly active. Her personality hasn't changed, but become so much stronger with each passing day. She is stubborn, single-minded, smart, so happy, opinionated, funny, and delighted by everything. She knows all of her body parts, a ton of animal sounds and learns new words all the time. She talks constantly about cars ("cai") and all the various "cai"s that she sees in a day, and has been a little focused on her and others butts, too. She is getting grabby with her toys, and vocal about her needs and wants. She is incredibly social, and loves to visit with her friends that we still see every week from the newborn group back at Beverly Hospital. She has a lot of friends and a lot of adventures. She climbs everything she can, kisses every animal she meets, and charms total strangers. She is incredible.

We had another photo shoot with our fellow blogger, Kerry Goodwin, too. These are the highlights of the day. You can view some more of the pictures from that day here (link to the proofs at the bottom of the post).

This little monkey has grown so much...

Talking Teddy

"Cup", "clap" and "quack" sound suspiciously familiar.

Hazel Gets Her Hair Did

The "before" shot- a crazy mess hanging in the eyes

"Most obstacles melt away when we make up our minds to walk boldly through them."

The first snip!

All done!  We just trimmed her bangs a bit.  I like it long and shaggy, and I love her curls in back.  She is still growing out her ICU bald spot a bit, so I didn't want to cut the back until it has sort of blended in a little bit more.  She just needed to be cleaned up a little bit.

Family.

Words

Hazel just said, "Oh, crap."  It's her second phrase, her first being, "Hi, dada".  I was picking cheese out of her hair and she repeated me.  Guess it's time that I start to (try to) clean up my mouth.

Her other words for now are;

cup (cu)

uh-oh

dog (dug)

woof (wffffff fffff)

mama

dada

hi (hhhiiiiiieeeee)

cat (ca)

that (dat)

no (nai nai nai)

I Love This

"Your toddler will do what they need to do and it's not necessarily what you say. If you're patient then they will be patient. If you speak gently then they will be gentle. Whatever you want them to be you have to start becoming."  Helen Hunt

Perfecting the Walk at Mount Vernon

Stay tuned for the good stuff at 1:45

Woah

I'm so embarrassed!  I am shocked that I have not updated here in so long.  I sort of put this blog on the back burner while other things took over our life and felt slightly guilty but nothing more.  Until I started getting the emails.  Thank you all for your concern- I guess I never realized how many people followed our lives.  Just to reassure you all; Hazel is OK!  In fact, she is more than OK.  She is totally nutso.  I think that since she started walking last month, our energy has been sapped.  I find myself napping when she naps almost every morning.  Part of this is because of the multiple sclerosis making me feel like I'm constantly operating on two hours of sleep.  Part of it is because Hazel is so busy that it takes every ounce of strength to keep up with her.  Luckily she is still a big sleeper, as she has always been.  She still takes a three hour nap in the morning, then a two hour nap in the afternoon, and continues to sleep a solid eleven to twelve hours at night.  When she is awake though...look out!  She is almost running now, and it looks so funny because she is still such a shrimpy little thing.  She just hit 21 pounds and is about 28 inches tall.  Little and chunky!  Perfect!  

She is also a little jet setter.  She has been to DC now twice, just this month; once for a quick family get away, and once to visit friends and do the MS Walk in Reston, VA.  She also did the Newburyport MS Walk up here in Massachusetts where we raised a whopping $3,800.00 for the Central Mass MS Society!  She is very proud of herself.

Hazel also survived her first stomach flu, and survived having the TV as a babysitter for two straight days while mama tried to survive the stomach flu.  We all got through it.  Jamie also managed to get through the most hellish project deadline at work that had him loving at his office for two weeks.  He billed 360 hours in three and a half weeks, and is long overdue for more of a break.  So am I.  

Our other big news is that Hazel had her post-op follow-up with her doctor at Children's Hospital and we got the best news we could hope for; she is doing great.  She has been eating and swallowing so well and has only gagged/chocked/regurgitated food on a few occasions.  She looks so healthy and happy, and there are no plans to do another esophageal dilatation anytime soon.  For now, they don't even want to see her for six more months!  It's just what we have been wanting to hear since November.  It feels so good.

So, life has been hectic.  I swear I have a TON of pictures to upload as soon as I have the time, but this child turned from a baby into a toddler overnight and I can't turn my back on her and her fiery emotions for a second.  She is talking, too.  I think she has about 7-10 words now, and has even used two words strung together to say, "Hi, dada."  That is probably the most heart warming thing you have ever heard, in that silly, croaky little voice.  She takes my cell phone and puts it to her ear and has whole conversations that sound like, "HHHHIIiiiiiiiii, dada!  Hi, dada!  Hi!  HHHiiiiiiieeeeeee! *insert some bubbly giggling as if dada just said something really funny*"  It's pretty hilarious.  She also "woofs" at every animal she sees, points and demands "THAT." at every single object, and screams, "NAI NAI NAI!" for "no no no".  Also, right before she does something that she knows I don't want her to do, like feed her food to the dogs, she looks at me with a very serious face and very earnestly shakes her head "no".  As if to tell me, "This is something very bad that I'm about to do."  It's damn near impossible not to laugh.  Every day she has a new dance, she is absolutely obsessed with her Legos and will sit in my lap, focused as hell, and play with them for a whole hour.  She has developed picky toddler eating habits overnight and now isn't really interested in anything but berries and cheese with the occasional spinach-artichoke nugget or tofu cube.  She also, as all toddlers seem to do, has developed a fine crust over her face, hands and throughout her hair.  She always seems to be dirty from head to toe.  She is just as opinionated, stubborn, funny, happy, bright, healthy, smart, silly, flirtatious, outgoing, laid-back, adaptable, flexible, curious, interested, silly, and adorable as she has ever been.  You won't believe how much she has grown up, if I ever can get these pictures up...

Thank you all for your concern, and for continuing to check in on us.  We have been out and about, seeing friends, happy as Ipswich clams and looking forward to the nice weather hitting our little corner of paradise!  Stay tuned.

We're Still Here

Hazel and I are both half dead from viral gastroenteritis, and Jamie has been working hundred hour weeks, staying down in Cambridge most nights to try and get this project done by Friday.  His company helped me out by paying for a babysitter this afternoon so I could get some rest and try to rehydrate myself, but I would rather have Jamie home.  I'm on hold with Hazels pediatrician now (going on 40 minutes) to see if theres anything I can do for her.  Maybe they can give me a little something something, too.

Thank goddess for mama friends, though.  With Jamie in the weeds at work, Laurie came by with milk for Hazel and Ginger Ale for me late last night.  Don't know how I would have hydrated without her!

Big news, though!  Life doesn't stop just because of a little vomit and diarehhea- Hazel is walking!  She loves it, and she is getting incredibly good at it.  It's amazing to me that a year ago she couldnt even hold her head up.  She went from taking a couple of steps to walking all over the house in just a few days.  It's adorable.  I love her wobbly drunken stagger, and she is just clapping and laughing all the time.  I do have video, and pictures, but can't deal with anything while we are sick and I'm a single parent.  As soon as we are feeling better, I will get back to it.

Hope everyone in TV land is doing well!

Some of Her Last Baby Pictures

Oh, this child. The moment she turned ten months old, the toddler came out, and the baby receded into the background. But this birthday tomorrow, as arbitrary as it can be, is the final cut- the coup de grâce of her babyhood. Every day she is doing something new. Today she said, "woof". She blows on her food like she is cooling it down. She does "Twinkle Twinkle Little Star" with her hands and dances and sways to any song she hears. Even car commercials. She stretches her arms up when I ask, "How big is Hazel?" and I say "soooooo big!" and she cracks up. She climbs all over me like I'm her gym. Today I caught her stacking blocks, two at a time! She puts thing in a container, instead of just dumping them out. She talks to herself. She points to her crib when she wants her nap. This child is amazing, beautifulandperfect.

It's hard for me to be sad about my baby disappearing, when this emerging kid is so cool. It's been such a dramatic year for our family and it's impossible not to reflect on everything that has happened. There is so much to look forward to though that I can't contain myself. I'll be printing out this blog thus far into a hardcover book for Hazel very soon. All of your comments are going to be a part of it. Thank you for being a part of our lives. Thank you for loving my daughter like one of your own. Thank you for all of the love and support this year. Thank you for taking an interest in our little life, for checking in on us, and for introducing yourselves and your babies to me. You are all a part of my families life, and will always be a part of Hazel's childhood.

There are so many things coming up in the future- on March 10th Hazel is scheduled to go back to Children's Hospital Boston for another procedure. The scar tissue in her esophagus has formed a stricture, or a narrowing and she has had a lot of difficulty swallowing beyond purees. It's frustrating, because developmentally she wants to feed herself, but physically she can't swallow anything that she might be able to self- feed. They will put her to sleep under general anesthesia and thread a balloon into her esophagus under xray. They will inflate it to a certain pressure that will tear her scar tissue and hopefully open her esophagus. This is a procedure that Hazel may have to have repeated several more times. Can I ask you all one more favor- will you please think of her, and send us your best, strongst, healthiest wishes? There is still the risk of a rupture of the esophagus, but there is also the opportunity to get her swallowing again without choking, regurgitating and aspirating. It would be really nice for us all to be able to relax a bit.

But there are other things to look forward to- spring is coming, and while we are sad to see this snowy winter go, we can't wait for days at the beach, walking along the river, swinging at the playgroud, exploring in the woods, spending time at the lake in Maine, and with our friends in Vermont. This will be Hazel's first year in the Warren, Vermont Fourth of July Parade and at the Tunbridge Vermont World's Fair. Our CSA farm will be opening for the spring season, soon and Hazel can participate in all of the fun things going on there this year. Hazel will be walking any minute and she is ready to explore the larger world. We are so looking forward to everything that is to come. We love you more than anything, Hazel Porkpie.

What Hazel is Doing Now

Hazel is eleven months old.  Can you believe it?  Neither can I.  Every month I planned to write what cool new developmental milestone she had hit, but I didn't.  There was a lot of stuff that I wanted to write but didn't.  I hope that I will never forget it, but I know I will.  I figured that I would take the time now to write a little bit about the Things Hazel Has Learned in these past eleven months- the culmination of all those neural pathways strengthening and paring away, all the practice and teaching and nutrition and sleeping.  I try to get pictures and video of these little things before they slip away or morph into something else more "sophisticated" (whatever that means), but Hazel can hear the camera turn on from a mile away and come rushing up into the lens before I can get a shot.  That is why I have had fewer pictures to post.  It's certainly not for lack of trying.  Every time I download a batch of pictures to the computer, I end up deleting about two thirds of them!  It's too bad, because I want to have some sort of record of all these little things she does.  I guess this is it, and hopefully in thirty years this will jog my MS lesion-littered memory centers and I will have perfect mental pictures of how stinkin' cute this kid was (is).  

Hazel waves.  She waves at every little thing she sees.  Every time we go get her in the morning or after a nap we have to walk her around the room so she can wave at each little thing. She doesn't do that grabby kid wave in which they just open and close their palms- she waves her hand and arm like The Queen.  We call it her Miss America wave, and it is adorable.  When she was in the hospital, the nurses would take her out to the nursing station so they could keep each other company and give us a break.  Hazel would just sit there and wave to all the nurses and all the other kids as they walked the loop on the unit, post surgery.  She doesn't smile when she does it- in fact, she looks very serious.  So serious that you have to laugh.  when she does something "bad", like try to eat the extension cord and I yelp , "NO!" she gets nervous and startled and turns around and waves at me.  When the disposal runs and the noise scares her, she waves at it.

She is clapping!  It's so funny because she does it whenever she hears any music, and when she is happy.  So she will get startled, wave at what scared her and we say something like, "Hi, disposal!" for her and she gets excited and claps.  Rinse, repeat.  All day, and I still can't get enough.  

This kid really loves music.  She sits with her legs bent under her and bonuses up and down on her butt clapping to any sort of music.  Right now I am playing a lot of Krishna Das, Armenian folk music, Jenny Lewis and the Watson Twins, Bon Iver, Magnetic Fields and Morphine.  She even started bopping around to Sonic Youth.  Go figure, but she has good taste.  I am taking her to Music Together classes and she is loving it.  I didn't know how it would go for her, but she is doing well!  They give you two CD's of all the songs in that curriculum, one for the car and one for home, and we listen to it a lot.  The songs are great and she really enjoys it when I sing them to her throughout the day now that she recognizes them.  

She is starting to stand on her own after pulling up, but she doesn't know it yet.  Once she figures out what she is doing, it's only a matter of time before she takes off running. As it is she crawls faster than I can run.

She is feeding everything to everyone.  Food, her pacifier, her bottle, lint, dog hair...everything she can pick up, she feeds to me, her dad, the dogs.  She has caught on to the fact that the dogs ill hang around and give her the desperately wanted attention if she feeds them, so she has really started to enjoy handing them little pieces of her food and getting them to lick her hands so she can laugh.  She even tries to feed me my own necklace, and hilarity ensues.  

Her language skills are developing so rapidly.  She is saying "mamamamama" at me and "dadadada" at Jamie but she is also mimicking other sounds and movements we make with out mouths.  The other day, she said DOG!  Seriously!  Jamie and I were both there.  She was in her booster seat, eating and of course the dogs were milling about her and she pointed at them and we said, "dog", and then she said, in a cute hesitant whisper, "dog".  We nearly died.  

I'm trying to take advantage of her mimicking phase by attempting to teach her to blow kisses, high five and do a terrorist fist bump.  We'll see how that one goes.  She sure is cute stuff...

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.

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.

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?

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!

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.

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.

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!