I love you even more today, and I still feel so lucky to be your mommy. I just wish I could whisper it right into your ear.

November 11th is a day I’ve been dreading for a while. I love birthdays so much, but the idea of yours arriving without you here has been really hard for me to think about. Sometimes I let my mind drift to all the things we could have done today. Lately, everywhere I look I see two year old girls holding their mommies’ hands. I try to imagine your little hand in mine as we walked (ran) down the path to a great adventure.

When I was a kid I used to think I’d feel so old and mature by the time I was a mom. That I’d have it all figured out. But the secret that no one tells you is that grown ups don’t really have it figured out, and that we still feel like kids in a lot of ways. When I found out I was pregnant with you, I was elated and totally freaked out. I was still a baby, and now I was going to have one! But then you came, and even though I still felt tiny and immature in so many ways, you made me feel so important. You trusted me and you needed me and I never doubted myself. I trusted you and needed you, too. I still do. I need you so much, baby.

It’s impossible to think about more November 11ths passing without you growing older next to me. It’s incomprehensible to think that I will never breathe you in again. The opportunities you were robbed of constantly smack me in the stomach and leave me doubled over. It is so unfair that you are missing out. It is so unfair that you aren’t here.

As your sister grows inside me, I wish so badly we could have a do-over. Because of the terrible gestation you had to endure, your little sister has benefited. She is healthy and strong, and it kills me that you couldn’t have that opportunity. I wish things were different. So, so different.

On your first birthday I told you you were my dream come true, and that is still the case. You are the best little kid a parent could ask for.

If you were sleeping next to me right now, I would whisper one other thing in your ear, something I whispered to you every night: “You are all I ever need.” It’s something I would say to remind myself that despite life’s curve balls, I was the luckiest person because I had you. And, even though I don’t have you in my arms anymore, I have you in my heart. It’s not how I imagined our lives, but I still know how lucky I am to have you there.

Happy birthday Madeline. I will celebrate you every day for the rest of my life.

November 11th, 2007 - 3 lbs, 1 oz, 15 3/4 inches

April 4th, 2009

I loved watching her play alone. I could see her mind figuring out how things worked. I imagined that she was making up stories in her head the way I used to when I was a kid.

narrating her play

making her dolly fly

showing off her mad playing skillz

off to play alone

see YOU later

it’s not a mess, it’s very well organized chaos

Sometimes, I’d haul my body off the floor onto the couch, and I’d read or edit photos while she played. And then, suddenly, she’d decide she was done playing alone, and she wanted the attention of a certain person in particular. Often, I would look up from editing a photo of her to see this face:

hi Mommy!

peek a boo!

I’m done playing alone now, Mommy.

She often found more creative ways to get Mike’s attention.

wet willy!

I look up countless times a day, expecting to see her peeking at me from the other side of the couch, or from behind my computer screen. What I wouldn’t give to scoop her up and play a game, only to have her crawl away to make up her own adventures. I think I will always expect to see her big blue eyes looking back at me.

her pride is evident

She even came to visit when I was on hospital bed rest.

it was totally allowed. cough.

And when she couldn’t visit Maddie in the hospital, she sent a stand-in.

almost life-like!

After Maddie came home, Rigby realized she had a new partner in her favorite activity – snuggling.

They shared tons of good times together,

laughing at jokes,

playing ball,

keeping each other clean,

sneaking food,

and dressing alike.

In the morning when we’d wake up, Maddie would make a beeline for where Rigby lay sprawled at the end of the bed. One of Maddie’s first words was Doggie. She loved her puppy SO MUCH. On Maddie’s last night at home, Rigby was glued to her. She insisted on sleeping right next to her instead of at our feet. When Maddie would wake with a little cough, Rigby would nuzzle her hand or foot. Rigby was there for her best friend, and Maddie knew it.

They will always be the best of friends.

After playing, we made a stop by a shop for dessert and then it was time to celebrate. We put a giant cream puff down in front of Maddie and let her go wild.

if you can’t see the video above, click here.

The cream puff was such a hit we decided we’d make it a tradition for her birthday every year. So next week, on the 11th, we will go to the store and get giant cream puffs. We’ll eat them with our hands and make a big mess, and we’ll remember how much fun she had on her special day.

Since last week, my neck and shoulders have been getting tighter and more painful. Finally, some physical pain to distract me from the razors of loss I feel every day. At first, the pain was a nice little distraction. My brain couldn’t replay April 7th if the act of merely sitting up stole my breath. But then the pain got worse, and worse, and I finally realized on Tuesday morning that maybe I hadn’t slept on it funny, and maybe something was actually wrong.

Sitting in the chairs behind the curtain in the ER, I couldn’t block out anything. A mother struggled to comfort her sick baby. The woosh of a steroid breathing treatment given by nebulizer to a little boy. An alarm sounding on a monitor. I tried to block it out and focus on my physical ailments. A doctor came and had me go over my medical history. I held my breath and hoped that no one would ask about Madeline. They didn’t. Another doctor asked me to rate my pain on a scale of one to ten. I wanted to ask him what people said was a ten. To me, a ten is watching your child die in front of you. Some shoulder pain isn’t on that scale. But I knew he wanted a measure of the pain he could treat, so I threw out a number that sounded urgent.

And then the pain started to get worse, and breathing became harder for me, and I remember just focusing, trying to get through another minute until I’d get a bed and get to lay down. And then I wouldn’t remember anything until I’d feel Mike tugging on my good arm, my left arm, and I’d hear him stay, “stay awake baby, stay awake.” I stayed awake, I tried, until I got hot and sweaty and the room went gray, and the next thing I knew I was in a bed.

Being in a hospital after losing Maddie doesn’t disturb me the way most people think it will. She was born in a private hospital, was in the NICU at the old hospital, and she died in a third hospital. The ER we went to is in the new hospital and has no bad memories for us, nor does the labor and delivery unit Binky will be delivered in a few floors up. But the sounds are the same. The deliberate pace the staff moves at until a crises starts. Mike and I are practiced at pretending curtains are actually soundproof walls when it comes to keeping patient confidentiality, but nothing could keep out the reminders that bad bad things can happen.

I drifted in and out of consciousness for most of the day. I was stunned when my mom arrived and it was eight pm. Mike made me eat some food and drink some fluids, and I was able to carry on conversations again. But before that, Mike had to step up and make decisions for me and Binky, because even though I could hear what the doctors were saying, I couldn’t retain the information. I was too clouded by pain and grief and memories. And when it came back that it wasn’t the horrible thing it could have been, but instead just more pain no one else could see, I was relieved. I have learned how to manage invisible pain.

When the final ER doctor came for a last examination and discharge and she asked me how old my first daughter is, instead of giving my “her second birthday is next week” misleading answer, I told her that my daughter had died. She told me she was so so sorry and I told her that I knew she was, and I was too.

Then we left the ER, and drove away from a hard hard day that in the scheme of things wasn’t really hard at all.

Luckily Dr. Risky got us in right away. Everything with Binky checked out well. She had a good heart rate, and Heather’s belly is measuring a bit big so Dr. Risky is going to check Binky’s growth in an ultrasound next week. When we got to the shoulder stuff, Dr. Risky was concerned for Heather, but not for Binky. That was a big relief for both of us. After checking her range of motion and seeing how hard it was for her to even lay down, she suggested we walk over to the Emergency Room and make sure there wasn’t anything bad going on.

When we arrived at the ER, the nurses wanted to send her up to Labor & Delivery until we explained that we’d JUST seen her OB. After checking her vitals and doing all that, we had to wait in the waiting room. I wasn’t happy about Heather being close to so many people with flu germs, but I was very happy the nurses made her wear this:

When we finally were brought back to see a doctor, Heather went through her history for several nurses and doctors. The resident assigned to her started to get suspicious that she might have a blood clot causing her pain. He ordered labs, so a nurse came over to where we were sitting to draw Heather’s blood. At this point, we were sitting in chairs in the hallway. The ER was packed with people and they were only giving rooms to the people who needed to be isolated. Heather told the nurse about her recent history with fainting during blood draws and the nurse said, “It’s OK, I won’t freak out if you faint.” Not the most comforting reply, so I positioned myself to hold her up in case she did faint. Thank goodness Heather can hardly move her neck, because as soon as the IV was started the whole thing disintegrated and blood went EVERYWHERE. If she’d seen all her blood on the floor, I think she would have fainted. Well, fainted sooner, because about five minutes after that her IV was placed, she went gray and the doctor had to rush to get her a gurney before she completely lost consciousness.

But, it got her in a room right away!

The next several hours were spent giving her fluids and trying to keep her comfortable. A Chest X-Ray was ordered and the results came back showing a cloudiness in her right lung. The ER doc said that the cloudiness could mean a few things: that Heather couldn’t take a deep enough breath thanks to Binky, that she could have something like pneumonia (even though she had no other symptoms), or it could mean something more sinister like a blood clot.

At this point, the ER resident called his attending AND Dr. Risky to get their opinions on what to do. Eventually he came back and said that the three of them had discussed the situation and they thought the best thing to do would be for Heather to get a CT scan. There were risks, though – there is a lot of radiation in CT scans, and she had to get one with contrast, which also has some slight risks. It was a really hard decision. Neither of us wanted to do anything that would hurt Binky, but obviously a pulmonary embolism would be awful. After much discussion (and a call to Heather’s parents), we decided it had to be done.

Heather said the CT scan was not fun. They made her lay on a hard table with her arms over her head. I know how little she’s been able to move her arm so I’m sure that didn’t feel good. She said the contrast burned going in and then made her whole body feel really hot. The radiologist had told her to expect the feeling of “wetting her pants.” SEXY! Luckily, she did not actually wet her pants. I think.

I should mention that by the time the scan was finished, we’d been there for eight hours. The place was jammed with people – we heard announcements for five incoming traumas, and the halls were literally stacked with gurneys of people. Two more hours went by and FINALLY we saw Heather’s new ER resident (we were there long enough for a shift change). The doctor said that thankfully, the scan didn’t show a clot. We were so relieved, although it didn’t explain Heather’s pain or shortness of breath. The new resident examined her a bit, feeling her back and neck, and figured that she must have a pinched nerve and some pulled muscles. She told Heather that her physical therapy team should be able to help her, but if not, she should come back to the hospital.

I really hope her physical therapy team can help, because neither of us wants to see the inside of a hospital room again until February.

Shoulder pain aside, this pregnancy has gone well. Getting this far without any of the complications of Maddie’s pregnancy is a very bittersweet thing. On one hand I am ecstatic for Binky. On the other hand, every healthy landmark we pass only makes it harder to comprehend what happened to Maddie. How can one pregnancy go so wrong when another can go so right?

Early on in this pregnancy Heather and I downloaded a pregnancy app for our phones. It’s a great thing…it keeps track of exactly how far along you are (62.9% finished as of this writing), shows you in utero photos of babies at the same stage as your baby, and, at the start of each week, tells you vital information about the baby’s development. Initially this information included things like: “this week your baby’s face starts to develop its features.” At week twenty-three, however, it added a new bit of information – the survival rate for babies born that week. (10-20% for week twenty-three babies.) As weird as this may sound, seeing the survival rate mentioned was encouraging in a twisted sort of way. It told me that, if something was to go wrong with this pregnancy too, and Binky had to come early, at least she would have a shot. At week twenty-four the chances for survival improved to 60%, and this week the odds shot all the way up to 70%. Seeing the number jump up each week felt good, but only when I thought about it in the context of Binky. When I thought about it in the context of Maddie, it made my heart sink.

The other day I couldn’t help myself and flipped forward through the information to see what it says about the survival rate for babies born at week twenty-nine (Maddie was born at 28 weeks six days).

It read: “The survival rate of babies born at 29 weeks is ninety percent.”

Ninety percent. Those are good odds. Anyone would be elated, for example, if they were told they had a 90% chance of having their dreams come true.

It didn’t say so in the app, but I was able to dig up statistics that said the survival rate for week twenty-nine babies improves well past 90% once a baby lives more than twenty-four hours. If he or she lives to see his or her first birthday, well, statistics only promise sunny days ahead.

Statistics are a funny thing though. They don’t matter much to the person holding the winning lotto number, and they don’t matter much to the person thousands of feet in the air on a plane suffering from mechanical failure. Despite this, I will smile for Binky as her survival rate statistics improve with each passing week.

For Maddie, I will cry.

We held Madeline’s first birthday party nine days early, on November 2nd, taking advantage of the proximity to Halloween to throw a costume bash.

It was a large party at my parents’ house. They have the room for that sort of thing. I wanted to invite the whole world, but I figured there were plenty of birthdays in the future for that.

Instead of gifts, we asked the guests to donate to the March of Dimes in Maddie’s name, and $540 was raised.

Maddie went from loved one to loved one, and every time I saw her she looked so happy and content.

photo by Auntie Dana

She was surrounded by love.

When we brought out her cake and everyone sang happy birthday, it was amazing. It was the culmination of eighteen months of worry, eighteen months of fear and stress. And it was a day where we were so proud of everything our Madeline had accomplished in her year on earth – all with a smile on her face.

It was the only time she had candles.

It was her only taste of birthday cake.

But it wasn’t the only time she heard happy birthday. Every day in the NICU at 4:22 pm we’d sing it to her. After she came home we sang it on the eleventh of every month.

We wanted her to have a hundred more birthday parties. But the one she had? Was great.

if you can’t see the video above, click here.

As Maddie grew older, she loved it when her daddy would play his songs for her.

And she often wanted to help him along.

One day I asked Mike to play for Maddie so I could get a video of her watching him. She was totally into it the first few times. But something would happen (a dog bark, ringing phone, wrong note), and we’d stop recording and start again. Foolishly I deleted those videos, and this is the only one we have left. Mike’s voice is hoarse from being sick, and Maddie’s attention span is starting to run out, but I still can’t get over the way she looks at him when he sings (even when he messes up at the end).

If you can’t see the video above, click here.

We still sing her songs, to each other.

17 weeks 2 days

24 weeks 3 days

Binky is moving along well, and it is such a comfort and relief. Things have been a little bit rougher for me but nothing awful. My sudden crazy upper back and neck pain has been super annoying but it all checks out OK and it’s nothing I can’t handle. My blood pressure has been kind of wild. High one day (132/83 is significantly above my baseline BP), and then extremely low the next day (83/40 is low for ANYONE). It makes taking my blood pressure every day feel like my own weigh-in scene on The Biggest Loser – I never know what the number is going to be.

I actually ended up calling Labor and Delivery over the weekend when my pressure stayed persistently low and I spoke with the on-call doctor. There was talk of me going int0 L&D for monitoring, but it was decided I’d stay home with clear instructions on when to come in and luckily I never got to that point. Two years ago I was admitted to the hospital with Madeline still in my belly. Walking into Labor and Delivery two years later (to the day) would have seriously tripped my brain.

I spend most of my days taking it easy. Dr. Risky wants me to be careful, but I’m not on bed rest so I can still go out, as long as I don’t over exert myself. Mike has been WONDERFUL picking up my slack, but sometimes I gotta get out of the house and grocery shop with him.

What, like Mike is going to let me walk through the store? I can’t get away with anything around here.