Remembering

I can't believe an entire year has gone by since we said goodbye to Charlie. The memories keep surfacing, like flashbacks, breaking my heart all over again as I relive them.

I remember starting out the day with the hope of weaning him off of the ecmo. I remember the delight at how well he was doing at first only to begin tanking towards the end of the clamping off. I remember feeling the dread as they confirmed he had had a stroke, and that we were out of choices. I remember reading him Love You Forever, and wishing the doctors and nurses would just leave the room for a little bit so we could be alone. I remember tears flowing as I said the words, as I selfishly begged him to keep fighting. I remember seeing everyone's Facebook status change to "Praying for Charlie".

I remember the look on Dr. Su's face as she walked in to tell us he was crashing, and this time, his chances were minimal. I remember asking our families to leave the room, then breaking down knowing we couldn't keep putting our son through this. I remember telling them we had decided to stop.

I remember holding Noah tightly as we sat outside the nurse's station, waiting to be called in to his room. I remember alarms ringing and people running into his room. I remember being pulled into the room as they restarted his heart one last time so that we could say good-bye. I remember the surgeons frantically putting a plastic cover over his open chest so we could hold him. I remember putting on surgical blue gowns over our clothes so we wouldn't get blood on them.

I remember my heart hammering as I stepped towards the warmer, hesitating. I remember the nurse shooing away Dr. Sinha, picking up Charlie with one hand and pressing him into my chest. I remember the tears flowing as I stared blankly at the monitors, saying his heart rate was 100...then 70...then 50...then they were turned off. I remember staring at my cold, sweet baby, in the midst of his blood all over the table..the floor...my lap.

I remember family coming in to say goodbye. I remember them making his hand mold. I remember wondering how I could ever get the strength to leave the hospital without Charlie with me. I remember staring blankly at three bags full of small bottles of frozen breastmilk and wondering what the hell I'd ever do with them.

I remember wondering how I could ever go on after losing so much.

Could this have really have happened an entire year ago?? Feels like yesterday, the way the memories keep coming back.

I miss you, Charlie. I'm sorry your life was filled with pain. I'm sorry you aren't here now.

I love you...and I'll always remember you.


- Posted using BlogPress from my iPhone

Location:Chincoteague Island, VA

A Birthday Letter To My Sons

My dear boys,

So much has happened in the past year...I have spent the past month having flashbacks, of good memories and bad memories and laughter and tears...so many emotions. So much love. So much heartache. Tomorrow is your first birthday and I can't believe everything the Baer bunch has been through...

My little Charlie, celebrating your first birthday in heaven...oh how I miss you. It seems insane that I knew you for less than a year and yet there is this gaping hole in my heart that will never fill again. I am the only one besides Noah who knew you from the moment you were created - from the first sono (taking up all the room in there, of course!), to the first nudges I felt since you were so high up. You took over my belly from the get go and made sure Noah knew who was in charge (don't think I forgot you kicking him in the head all the time...). I picked your name because even inside you were the more mischievous one, sticking your butt out in the air whenever you wanted attention (ps - that hurt!!!). I wish I could know what you would be like now. How your laughter would sound, what your favorite toy would be, or your favorite book, or your favorite food. Would you love bath time like your big brother? Would you also be getting into everything possible? (based on what I know of you...yes). I can't imagine how insane my life would be right now, especially if you were the more mischievous one (Noah is working hard to fill your shoes). But I wish I could know. I wish your life hadn't been filled with so much pain. I hope you understand that I loved you from the moment you were created, continue to love you, and was only trying to give you a chance to live. I know you are happy now, without pain, and in the end that's all I ever wanted - for you to be happy.

And my little chunkeroo Noah...As you turn one year old, I find myself filled with all sorts of emotions that I am still trying to make sense of. This past year has been both joyful and heartbreaking. However, I want to make sure something is very clear to you: Watching you grow over the past few months has been indescribable. You came into this world a tiny, shriveled little thing (in the words of your Tia Lucy, a little Benjamin Button). Little by little, you grew. You became more aware of your surroundings. Your great big blue eyes took in everything - continue to take in everything. I see the wheels turning in your head as you observe everything, get into everything and try to make sense of everything. It is incredible. You smile a lot, you laugh from deep down in your belly, and you flirt with everyone, and strangers stop to comment how cute you are. You simply smile, throw your hands up and keep swinging your feet. Such a sweet little man. You're a perceptive little guy. When something makes me cry, you pause and look at me with your inquisitive eyes and I can almost hear you ask "what's wrong?". Then you reach out your little hand and do something to make me smile. I know it's not fair for me to be so sad. You need your mama. And I promise I'm trying my best. But I really do hope you understand something:

April 26th 2010 was by far the best day of my life. Nothing that has happened can EVER change that. You are an amazing little boy, and I am so lucky to be your mommy, and to watch you grow. I'm not perfect; in fact, I'm not even sure I'm all that good. But I love you more than life itself. And I promise to do my very best for you forever, and to try to not be so sad.

One year ago, my life changed in indescribable ways. But one thing remains true - I am blessed, SO blessed, to be your mommy, boys. I thank God everyday (literally) for both of you.

Happy first birthday, Noah and Charlie. I love you boys.

Love always,
Mommy

The holidays...

The holidays are usually a time for cheer and laughter. Excitement and love...especially being a new parent of a wonderful little boy. And for sure it will be. The holidays for the new parent are a whole new ballgame.

But we are not only new parents. We are also bereaved parents. And that throws a whole different perspective on the holidays.

Things were supposed to be so different. We were supposed to be frazzled and probably out of our minds. We were supposed to be exhausted. We were supposed to be overwhelmed by juggling two little boys. Instead we are overwhelmed by juggling immense gratitude for the health of one and for the ability to watch him grow...and the incredible grief of losing another. We were supposed to be buying them both toys.

It was supposed to be different.

There are so many things to be thankful for. Noah is the biggest blessing I could have ever asked for. And I am very thankful for having had Charlie in my life. Such an amazing boy. But I can't get past what these holidays could have been. I am trying to keep a smile on my face, get through each day, but my heart is broken. I will do my best to enjoy what I can, and remember that Charlie is in a good place...even if my selfish heart wishes he were here with me.

Please be patient with me in the coming weeks. I burst into tears at the drop of a hat...I withdraw easily...and now you understand. I know I will never be the same person again...but hopefully I can be close to that. Just be patient. I'll be back.

With love,
Mina

One year changes everything...

(A note from Mina)

A year ago today, I was staring blankly at a second thin pink line on a pregnancy test. Convinced it was a broken test, I took another one. Then another one. I immediately thought they were too faint to be real, so I went to bed, and retested again in the morning. Then a fifth time. That evening, at dinner, I sheepishly told Josh, "Um, I think I'm pregnant? But I'm not sure. Maybe it's just a hormone secreting tumor." My darling husband looked at me like I was somewhat crazy and said "Um, okay..." I was convinced it couldn't possibly be. Who gets pregnant on their first try?

That Saturday I took a sixth test (I know, I'm neurotic). No longer able to deny a big plus sign staring me in the face, I went to work in a bit of shock. My OB saw me, ordered a blood test, and there it was, confirmed. Pregnant. Me being one of "those" people, googled the level of HCG my result showed me. From what I saw online it was very high compared to what the charts said someone at 4 weeks and one day should be. Later that evening, after telling my sisters, Lucy joked that maybe I was having twins.

It's amazing how the events over 4 days one year ago can still seem so clear to me now. At times it feels like forever ago. At other times it's like it just happened. Josh and I have been through more in the past year than most people will see in a lifetime. We had just gotten back from our BIG trip to New Zealand. I finished nursing school, became a nurse. We both started new jobs. We moved to Annapolis. We had two sons. We lost one. We became part of the CHD community, whether we ever wanted to or not. We learned to cherish Noah more than ever, because we've been slammed with the alternative. It has been a rollercoaster with more tears than I care to admit. More heartache than anyone should ever have to know. But more also more joy than I had ever imagined.

I look back on that extra thin pink line and how my life changed instantly, in that moment. I can't say I regret a single part of what has transpired in the past year. Of course, I wish Charlie were still with us. I miss him and I hate that he suffered and fought so hard, and the passed away. But he has taught me so much, and filled me with so much love. And of course, without Charlie, there'd be no Noah.

So of course I am heartbroken. And still feeling like a part of me is missing. (It is.) But I look back on the past year and think, I am a lucky woman to have been blessed with such two amazing little boys, as well as an amazing husband. I'm a completely different person than I was 365 days ago, as is Josh. But everyday I hear throaty giggles or see a gummy grin flashing at me, or hear about how our story has made an impact, I know we are really and truly blessed. A year ago, I would have told you I could never survive what has happened - I would never make it through. But here I am. Still standing.

Indeed, one year does change everything.

Been quite a while...

So it surely has been quite a while since we updated. When time starts moving, it sure moves quickly. Mina got a postion as an RN at Sibley, working in postpartum. It has been a little rough for her, being away from Noah, but so rewarding to help new moms and new babies during such a joyous time! Working in maternity is a true blessing.

Noah is growing like a little weed. He is almost 15 pounds already - meaning he has tripled his birth weight in just 4 months! He has started to laugh, and smiles all the time. We feel so blessed to be his mom and dad; every day with him is such a miracle and blessing!

We thought we would just update, if anyone still reads this, that we are doing okay - just taking it day by day. Some days are harder than others, but we are slowly pulling through. We have decided to start a team in the first annual Congenital Heart Walk - Team Charlie. We are asking for people to either join us or donate to our team at this link: Team Charlie. Please help us raise awareness and money to benefit two great organizations assisting folks living with CHDs.

Also, tonight, just please say a little prayer for the people who are affected by CHD. I've gotten to know so many people who are helping their child fight for their lives daily, or whose children have unfortunately lost the battle against CHD. Pray for the mommies, daddies, brothers, sisters, babies and grown ups, and little angels in heaven, all touched by the number one birth defect in the US - congenital heart defects. Thanks!

Father's Day Weekend

This weekend, we finally came out of hiding and visited with a few people. On Friday morning, we watched the USA match at the Hammers' house with several friends. Noah got to meet some new buddies of his, Caleb, Amanda, and Jonathan (such cuties). Saturday, we got to visit Josh's grandma; it was her first time getting to meet Noah. She's had a bit of a rough couple of months, and with everything that had been going on with us, we just never got a chance to visit. In the afternoon, Patience, Jordan and Eliana stopped by to visit on their way to the Eastern Shore. It was our first time seeing them since the boys' birth, and it was so good to finally see them. The kiddos eyed each other warily while visited, and we can't wait to set up future play dates, and hopefully see them again soon. As the only other people we know to have gone through this, they have been so kind, so understanding and so wonderful to us throughout this whole ordeal. We know we couldn't have made it through without them.

Today was not only Father's day, but a big day for Mina's family - Brasil soccer! We headed to Lucy's house to watch not only the Brasil match, but the earlier New Zealand match as well. Needless to say, we were pleased by both results. While we were there, Noah and Maya got a little more acquainted and played (or maybe more wary staring). There was lots of family time, and we had tons of fun.

At the end, it was a mostly good Father's Day - yet bittersweet. We can't forget that one month ago today, our family experienced a loss we can never truly recover from. It was a good day - but we remember our buddy Charlie and how much we miss him today.

Noah lovin'

Has it really been 7 weeks since delivery? Sometimes it feels like forever ago, sometimes we feel like Noah is still a newborn! He's been doing well, he has quite a bit of reflux and colic. Some nights we get some sleep, others...well, thank goodness for coffee. No matter how tired we are, though, he brings smiles and laughter to our daily lives, and we are absolutely in love with this little man.

We found a great book online this week, called "Always My Twin" by Valerie Samuels. It's a book about being a surviving twin. We think it is very important for Noah to always know about Charlie, and know what a brave little soldier he was. We've also started to sort of get into a routine, somewhat, now that we are settled back at home. The next step, Mina begins the job hunt as an RN which is a little difficult at the time. Financially, because we are living with Josh's parents, it isn't completely necessary however, we'd like to work on what our primary goal of moving here was - saving to buy ourselves a house! So hopefully Mina will be able to find something soon. She'd love to go back to where she worked before, and hopefully it will work out!

Lastly, our friend and amazing photographer Janete came to take pictures of our little munchkin last weekend. She did such an incredible job, we can't thank her enough. Thanks Janete!!! Here they are...Mr. Noah, 7 weeks old, cutest baby ever (and we're pretty sure he knows it):