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.

And Beginning

Welcome to Elias James Donovan, who born January 28th, 2010 at 10:31 PM. Weighing in at a measly 7 pounds 15 ounces after my fears of a 12 pound baby were thankfully unfounded. Apparently I was measuring 43 weeks pregnant when I was 39 weeks pregnant not because of a large baby, or too much fluid, but because of a gigantic umbilical cord that was a whopping 2 pounds! The clamp didn't even fit around it. I was admitted to labor and delivery at 8pm with mild and irregular contractions and two and a half hours later was holding my baby. No pain medications, not like there would have been time even if I had wanted them, and I gave birth standing up, like a cow in a field after pushing for twenty minutes. It was very intense, and very cool. Elias did great, and has a bit of facial bruising as a badge of honor of his Bad Ass Birth. He looks just like Hazel when she was born, but with a lot of black hair and darker eyes.

So far he has been even more mellow and sleepy than I think Hazel was, and that's saying a lot. I don't know that his eyes have been open for more than ten minutes total today, and he has only cried twice. He has already been sleeping for five hours at a stretch at night, and I have to wake him up to feed him. He is a great eater and has been working hard on his pacifier and is the jumpiest baby I've ever seen, startling constantly, wether or not there is even a stimulus. Keep it up, kiddo. I hope he is as good of a sleeper as his big sister.

We came home from the hospital today, and Hazel has been having a difficult time. She is very fussy, sensitive and hyper. She has not removed her pacifier from her mouth for even a second, and has not put her "beeko" down. She has been vacillating between clingy and angry with us, curious about the baby and jealous that he has socks. Things will be ironed out in time, but this is not going to be an easy transition and the poor thing is breaking our hearts in the meantime. My mother took this picture of her in the hospital room, paying me a visit. Heartbreaking, no? Especially wearing her big sister cape, and big sister shirt.

We are trying to get her back into her regular schedule as soon as possible, back to normal life. She has been "helping" as much as she can and getting lots of extra attention. Thats really all we can do at this point! Someday she will be happy with her little brother. Unless she is like me, that is... cross your fingers, folks.

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

So, What Have You Been Doing That You Can't Blog?

Touch down estimated to be February 3, 2010. I'll have two under two for two weeks! Wish us luck! Hazel won't know what hit her.

P.S. No fertility treatments needed this time! I love surprises.

One day, and Some Birthday Fun

We went to cousin Owen's second birthday last month- un-freaking-believable that it's already been a year since the first one.  Hazel fell in love with this little buggy, and because her feet didn't touch the ground to mover herself around, Sucker Mama pushed her all over the play space for most of the party.  It was pretty awesome for her.  She is really into mechanical things right now- her Legos are her favorite toy that she can play with for an hour straight.  She loves anything with wheels and anything that moves.  I'm going to have to become one of those mothers that pushes the car-carriage hybrid at the grocery store very soon.  I always hated those things, but now I can appreciate the genius behind it.  Anyway, this was one of those times where she had to be forcibly extracted from the buggy as the play space employees flickered the lights on and off.  I had to carry her out under my arm, legs flailing, screaming bloody murder.  I secretly love it.

Just some pictures of my kid hanging around the house looking cute.  Playing with the dog dishes.

This!  This picture stops my heart.  This is her smile that slays me.

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

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!

The Case Agains Breast Feeding

I always like provocative!

Tell me what you think, and PLEASE be respectful.

Proud

This is where it all began...

In early labor on the day you were born.

Transformed

We were still attached

Your first breath, my first look in your eyes.

Your first kiss.

Melting.

Spectacular.

We thought we loved you as much as we could then, but our hearts are bursting more every day of your life.

Swollen, puffy, tired. Quiet alert.

Proud.

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.

Countdown

I'm thinking back to one year ago tonight, eating the pumpkin tortellini at Chianti's in Beverly that is rumored to put women into labor.  I didn't even have to place my order- our waitress saw me coming from a mile away and said, "I know what you came here for!"  We had just been to see my OB where I was told my cervix had not budged and the baby had not dropped into my pelvis.  He told me that if I went into labor, it would be unsuccessful, and that I would need a Cesarean, dashing my hopes for a natural birth.  I remember sitting at dinner with Jamie, depressed and talking about how I had been so focused on my estimated due date of February 19th for so long, and here it was going to pass totally event free.  I remember thinking that even if it didn't work, that at least I got to eat pumpkin tortellini with Gorgonzola cream sauce.  I remember I was wearing my favorite black maternity top and jeans.  It was very cold, and traffic on Cabot Street wouldn't stop for me to cross.  It was our last night out together for a very long time.  It was the last time my family was only two people.  It was the last night of my old life.  Cliche, but my last night living in black and white.  It seemed like an ordinary night back then, but in remembering it... it was extraordinary.

Happy Inauguration Day!

Hazel went to her infant massage class this morning that my doula, Lorryn is doing for a small group of friends, but she skipped her afternoon playgroup at the Ipswich Birth to Three Center so she could stay home and watch the historic Inauguration of President Obama on the tube. She was delighted by it, clapping whenever the crowd clapped (often) and staring with rapt attention at Elizabeth Alexander's poem being read. We are all very proud of our country today!

Here are some pictures we had laying around from the month. We had grand plans to go out to see our friends in western Massachusetts for New Years Eve, but instead we were hit with a big snowstorm and a very fussy baby who, turns out, had a double ear infection and four teeth coming through. So, instead we stayed home like most of New England did. On New Years Day, mama drove out to Stockbridge to attend a four-day yoga and meditation retreat at an ashram. It was nothing short of amazing. I left there walking on clouds.

This was something I had been planning on doing all year in honor of Hazel's first birthday. February 19th not only marks the end of her first year on earth (this time around) but it also marks the day I became a mother, the happiest and most transformative day of my life. Obviously, this year has been full of transformations for my little family; some positive and some not so positive. But they all brought us here, to divine perfection. Being back in Stockbridge is always a bittersweet time for me, too (see the MY CAUSE section of links in the sidebar) as it was the place where I was abandoned and abused so many years ago. Now that place lies in ruins, leaving a wake of scarred adults behind it and right next door is this place of magnificent beauty and warmth where I went for healing. I see everything coming around full circle for me, in a series of circles, series of cycles, always beginning and ending in a New England winter. Sorry to be cryptic, but 2008 was a year of revolution, in the truest sense of the word; back to the beginning with my birth from a clam shell in the sea foam. Hazel will know what I'm talking about, and she is the only one who matters. Viva la revolution! Viva Obama! Viva New England! Viva Hazel and her mama! Viva viva viva!

Another classic stink-eye.

Double ear infection never stopped me!

Taking the T (subway to you out-of-towners) from Harvard to the Museum.

Learning how to wait for the next train with a look of boredom and mild distaste like a true Bostonian.

Making friends at the Aquarium- a doomed relationship.

Why so aloof?

Watching Planet Earth. I had to put her in her Exersaucer because she was trying to climb into the TV.

Using chopsticks at wagamama, the best little noodle house! This is where we like to go when we visit Jamie at his office for lunch.

Working

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

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

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

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

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

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

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

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

A tandem Christening.

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

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

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

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.

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.

Survivors Guilt

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

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

Her Miraculous Recovery

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

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

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

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

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

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

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

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

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