20 Months Without Her.

Today marks the 20th month since Eleanor died. I have cried twenty times on the 14th.

I still vividly remember that day. We were so hopeful. The doctors said she was stable enough to fly to Washington D.C. for heart surgery and after being delayed one day already (so the flight team could assist with Haiti earthquake disaster relief), we were very eager to get going. Chris and I sat by her that morning and allowed ourselves to fantasize about bringing her home. We talked about how protective we would be of our sweet heart baby, but how important it was to let her be a normal kid. Oh, how we wanted to hold her! We made plans for me to fly with her that evening and for Chris to fly commercial the next morning. The Ronald McDonald House at Children's National had a room ready for us, although we knew we would be staying with Ellie as much as possible in the PICU. We busily cleaned our room at the local Ronald McDonald House in preparation for checkout and made final arrangements with family for the care of our then 19 month old son while we were away. At 2pm that day, we received a call that Ellie wasn't doing well and rushed back (we had only been gone an hour or two in order to pack up and clean). We only had six more hours with her and then she was gone.

I am starting to get anxious as we get closer to the 24 month mark. Two years since my baby left. It feels like a lifetime ago, yet it is all still so fresh. I feel like a different person and don't think I will ever be who I was January 3rd of last year when we were still so blissfully ignorant. Ellie was perfect as far as we knew. But she was already fighting for her life.

Will I ever be 'normal' again? Will this ever make sense? Will this hole in my heart ever heal enough to where I can say her name without fighting tears or feeling that lump in my throat?

As I am typing this, her baby sister is wiggling and kicking inside at 34 weeks. What a bittersweet time.

Trying to be Strong

What does that mean? Strong. "You are so strong." "You are stronger than you think." No, I don't think I am strong. Quite the opposite really. But what other option do I have? I must wake up. I must care for my son, whom I love more than anything except my husband. I must get up and go through the routine. I want the beautiful baby girl growing inside me. So, I continue on. I try. I try so very hard.

I have been fighting tears the last few days. On Saturday we went to the Ronald McDonald House where we stayed during Ellie’s fight. We try to bring lunch occasionally to the brave, humble, loving parents staying there because people did it for us when we were guests. We decided to stay and eat with them this time and spoke to a nice father and mother-in-law. We also got to see Ellie’s “heart” displayed in the hall. If you aren’t aware, the RMDH memorializes children with hearts…this chapter has several, several display cases full of them. It was emotional to see hers.  I miss her so badly. I think about what she would look like and what her personality might be. My heart aches for her.

This morning, after we dropped our son off at daycare, I had a flashback to the moment I was holding Ellie and signing as her heart slowly stopped. I didn’t want to upset or worry my husband so I fought as hard as I could to make the tears stop. I’m not sure he noticed. But I could hear and smell everything from those last moments. I caught myself starting to rock in my seat as I thought about it all. She felt so good in my arms even thought I knew it would be the last time…

Tears. I try so hard to think back on my grief counseling. Distraction. Looking at a picture of my son. Deep breaths. Take a drink of water. Count something to use that other part of your brain. Take a walk. This is so hard. When will it get easier? August marks the 19 month since Ellie died and it still feels so fresh.

I start my third trimester this week and I am terrified. Although we got the “almost” all clear from the Maternal Fetal Medicine Specialist and Pediatric Cardiologist (you will never get a 100% bill of health) at 20 wks, I am still worried. Ellie was okay at 20 wks too. And it was at her 4D ultrasound at 28 & 30 wks when we discovered her severe heart defect and hydrops. We are having a 4D for Adelaide this Friday and I will be 28.3wks. What if they see something again? And how will I react to the 4D in general? I have been trying hard not to obsessively call my doctor or rush to Labor & Delivery at every twinge of pain or fear. I try not to talk about my constant anxiety and awful thoughts that something is wrong. I try to make other people comfortable when I can and not talk about any of this (except here). I try. I try so very hard.

I know what some of you are thinking. Stop with the dire thoughts. Think positive. Everything will be okay, you just know it will be. Just TRY. That’s what I thought last time too. But now that the unimaginable has happened, it makes it much more real. Bad things happen. Period. And they can certainly happen again. There is no reason why some babies live and others don't. I don't care what your philosophical views are, there just isn't! It's not fair, but that is nature. 

I will continue to hold my breath through this pregnancy. And I will continue to worry. But I am hopeful. Enjoy this pregnancy, you say? It's time to move on and stop dwelling on the past when there is nothing I can do about it? You think I should just try harder? Walk two steps in my shoes and tell me that again.  

Bittersweet

We found out two weeks ago, at 19wks pregnant, that the baby has a healthy heart and no signs of hydrops! That was confirmed by a Pediatric Cardiologist the following week. I cried tears of joy and my husband and I both gave a HUGE sigh of relief. Another milestone has come and gone and we are still progressing along. During those appointments, we also learned that we will be expecting our second daughter. Her name will be Adelaide.  

I had mixed emotions to this as I knew it would be difficult no matter what the gender was…although that was the least important thing to me during those appointments. But once it sunk in that we had a healthy baby, the realization that I would finally have my living daughter both excited and terrified me. All the fears I had with Ellie came rushing back, which made me miss her even more. And I am terrified people will forget her with the new baby coming, especially since that baby is a girl. But we ARE so very excited.

My husband and I went straight to Target and bought a few toys and an outfit as soon as our appointment was over. We hadn’t allowed ourselves to get too attached until this point out of fear. But these appointments allowed us to imagine bringing Adelaide home in October.  As we excitedly talked about what was to come, it hit me that we already HAD this conversation a year and a half ago: What would it be like to have a girl? Would Sebastian be a good big brother? How would life change with two children? Remember what it was like with an infant? We had the furniture. We had all the toys and clothes. We were almost ready for Ellie at 30 weeks, just missing a few minor things. But now, now we would be going through the exact same motions as before. How strange to talk about bringing a new baby home, totalling two kids, when you have had three (and two butterfly babies lost by miscarriage)?

And I can't help but think about how Ellie’s 20 week scan was good too. The specialists have both said they would’ve caught her condition by then and it really depends on who is looking and what type of equipment is used. They said at this point they can see 70-90% of all major defects, with the disclaimer that something could be missed. I can’t help but fear the outcome will be the same for this daughter although I desperately hope it isn’t.

People keep asking me if I feel “better” now that we know the heart is okay. Will I “enjoy” this pregnancy more. The answer is complicated. I will never, ever be “better”. My daughter died, in my arms, and nothing will erase that. I have met amazing women who have suffered the loss of a child and now know there are many other complications that can occur. I am a little more at peace about Ellie after talking with the Cardiologist about her defect. I am allowing myself to talk more to Adelaide and do feel more connected. My husband has confessed he deseperately hoped for a girl and has every intention of spoiling her rotten in lots of pink, girlie things! If anything, these appointments and discussions with specialists have allowed me to begin forgiving myself for things I feel guilty about. I am beyond hopeful. But I still have so much fear. The unimaginable has happened and my eyes are wide open now. Although October will hopefully bring a healthy baby girl, my grieving journey will continue for a long time. Eleanor will never be replaced.  

What's in a number?

My son will be turning three next week and is a pure joy. Of course we battle over what shoes to wear, the amount of TV to be watched, and what’s for dinner. But he also says, “I love you”, snuggles, tells awesome stories and makes the most brilliant observations, “My head is a circle!” Overall he is a wonderful, smart, compassionate little boy and I am truly blessed to have him. I cannot wait for him to have a living sibling to play with.  It's not that we haven't tried to give that to him.

When you are pregnant, people seem to lose a filter and say whatever pops into their minds and can occasionally lose control over their bodies and touch your growing tummy at a moment’s notice. This being my third (fourth counting the early miscarriage in November) pregnancy, I’ve heard and experienced this a lot. “No, there aren’t triplets in there.” “Yes, I am waddling as I walk.” “Yes, I understand things are about to change in our lives and become a little more hectic in the beginning.” I have been felt up (i.e. violated) by strangers and acquaintances. I even watched recently as a man pretended to make a large arc while walking around the apparent hugeness of me. But I usually shake it off, even if my feelings are hurt. This time is different though. I'm not sure people know how to talk to a pregnant women who has had a child died.

I was taking my son to daycare this morning and he just HAD to jump down every step instead of walking. A line of parents were forming to leave and I apologetically looked at them and said, “Sorry! You know everything is a game!” A mother looked at me, one who knows that Ellie died last year, and said, “Wait until you have two.” I smiled politely and nodded my head. But I cried and screamed inside, “I HAVE TWO CHIDLREN. ONE IS NOT HERE, BUT SHE EXISTED. SHE COUNTS! DON’T FORGET ABOUT HER!”

If you have suffered the loss of a child and are pregnant, or if you have a surviving/living child at home and lost another child, you understand the conundrum I am in. For 12 months, I had no hesitation when answering how many children I had: Two. Period. If people asked, I gave out more information. I didn’t try to guilt people, but I do have two children and I’m proud of that. (Please note that if a woman loses her first and/or only child, she is STILL a mother. I don’t even feel that deserves an explanation as it is common sense.) But now that I am pregnant, I find it hard to explain. People are usually smiling and excited when they talk to me as most are when a new life is about to enter the world. They will ask if this is my first, second, etc. pregnancy and I always say third (I feel so guilty for leaving out the miscarriage…I think I will start including it from now on). Then the question of what do we have and how old follows with "What do you hope this one is". I want to answer the last question with, "Alive." Whatever I do, which is try to stay true to myself and babies, I have to watch as they uncomfortably shift or look away, desperate to get out of the situation. It's a repeat of the months after Ellie died.

And there is more. Those that know I have a son will say, “I bet you hope it’s a girl” or “I hope it’s a girl.” It is bittersweet. We find out next Tuesday if the baby is healthy and the gender. If it is a boy, I will be sad because I will never have my living daughter. If it is a girl, I will be sad that is wasn’t Ellie and scared that in some way I am replacing her. Hearing people talk about hoping and wishing for a girl hurts more than them thinking it is a boy for some reason. I want my Eleanor. I know it may seem irrational to some. I know you may think I need to just be happy and stop worrying. Maybe you are right. But until you’ve been in my shoes, I’d ask you to refrain from sharing those thoughts. I try to avoid talking to people about how much pain I am in. How I fear getting close to this baby in case it will die too. How I am worried others will forget about my Eleanor or two lost angels, Pizza and Baby K, when this baby is born. I really try to be optimistic, but the unimaginable has happened…multiple times. I can’t just think happy-puppy-dog-and-sunshine thoughts and magically be okay. Of course I want this baby. I know that stress can affect your body and pregnancy. I wanted ALL my babies. But I am terrified. You tell me how to stay calm after all we have experienced! I'm willing to try it!!

We have decided to wait a little while to tell family and friends the gender of the baby. I need to process it. I need to celebrate with my husband and grieve for the lost babies in our lives. Whether this is baby #5 or baby #1, it is wanted and loved. I so hope the baby is healthy. I would appreciate your good thoughts, fingers crossed or prayers to whatever you pray to that it is.

Pregnancy isn't a "Cure"

It is rare for me to post more than once a week let alone twice in one day, but I recently read something that floored me. For those of you that don't know, I'm about to drop a bomb on you (being just a tad...okay A LOT...bit sarcastic right now).

Pregnancy. Is. Not. A. Cure. It does not magically erase your memory. And it certainly doesn't fill that missing piece of your heart left when your child died. Are you thankful for surviving children? Hell yes! Are you beyond hopeful for a healthy pregnancy after loss? No question! But please, please, never under any circumstances think that a woman who has had a baby die is "better" or over her grief because she is expecting. There is no time frame for "dealing" with that grief. You never get over it. I am 16 months out and hurt everyday although I may not show it.

Being pregnant is bittersweet. I cannot wait to hold this baby and often wish I could fast forward to it being safely in my arms. I am terrified. But this baby is wanted. This baby is wanted to be healthy. This baby is wanted to be alive.

And while we are on it, "thinking positive thoughts," doesn't save lives. Don't tell me to "be positive" for the baby growing inside me. I had NOTHING but good intentions and thoughts about my daughter and it didn't save her. While I held Eleanor in my arms as she died, I thought positive, healing thoughts and she still didn't make it. Some may think there is a reason for everything, but I am still trying to figure that out. So, please spare me your explanation of why I had to watch my daughter die. You insult me and dishonor my daughter by trying to explain something so horrific away. I may not share your belief system...please keep that in mind. I can respect you as long as you respect me.

Calming down now...

Yes, new hope has been brought into our lives with this pregnancy. Yes, we are thankful for our son and all of our babies no matter how short their time was. Yes, life goes on. YAnd yes, the time to walk on egg shells has passed. But, if you have not experienced the death of a child, please think before you speak, and don't assume anything about how me or my family is processing what has happened. You can have no idea what we are going through...and each one of us is different. Please try to be compassionate and continue to be patient with us. Thank you to our loving friends and families who have and never would say the above to us. Sorry for the outburst. 

The Tale of Miss Emily and Mr. Daleshire

I feel like my life is slowly morphing into a Victorian novel. BBC worthy even!

The tale starts with a young women on the outskirts of everything. Her name would undoubtedly be something like Miss Emily. Miss Emily has different ideologies, political views, philosophies, interests, etc. as the other young women in her social circle. But she plays the part of the good girl and does as her parents and society expects: good grades in high school, college, and graduate school followed by getting a job. Along the way she meets a handsome older man who is somewhat of an outsider himself. Not the typical Alpha-male type but an artistic, educated, funny man, secure in his masculinity and confident in his abilities. We will call him Mr. Daleshire. Mr. Daleshire and Miss Emily court within the traditions of their day and fall deeply in love. Shortly after professing their unyielding love for one another, Miss Emily travels 2,000 miles away to volunteer for one year. But their love stays true over the days and miles and Mr. Daleshire proposes to Miss Emily while she is away. They marry a year later. Bliss.

The next few years are full of laughter, love, and adventure for the Daleshires. They travel the world. Buy a house. Get a dog! All the wonderful things young couples do when they are in love. However, despite this deep love and respect for one another, they feel something is missing. A child. So, they excitedly begin trying to have a baby after two years of blissful marriage. Months upon months pass; their spirits being broken along the way. But then, fifteen months later, they find themselves expecting a baby! Excitement and fear! The pregnancy and baby boy are perfect. Life couldn't get any better.

Mr. Daleshire, being the hardworking, honest, and intelligent man that he is, begins to look for more career opportunities to supplement his growing family. So, the Daleshires pack up, leaving dear friends and family to travel to a new place. This place isn't ideal for either person. Upon arriving, Miss Emily is in tears and vows to leave within three years. But Miss Emily also finds employment in the new place, they purchase a house and begin to talk about expanding their family again. Discouraged by the length of time it previously took to get pregnant, they are shocked after just four months to learn they are expecting their second child. The pregnancy progresses wonderfully; a girl! The Daleshires cannot wait to complete their family. Their visions of two children playing in the yard is coming to fruition.

Then disaster hits at 30 weeks pregnant. The baby girl is very sick with an imperfect heart. Chaos ensues after the news is broken. Hospitalization. Doctors. Prognosis. C-section. Diagnosis. NICU. Death. Within 10 days of finding out, the beautiful baby girl has passed away. The Daleshire's world is turned upside down and their hearts are broken. Relationships with family members deteriorate or all together end. Friendships are made and lost. They fight harder and love deeper than ever before and somehow survive.

As time passes, they slowly begin to regain strength. Although they are in love with their son, they grieve for their daughter and yearn for another chance. Ten months after the death of their daughter, they become pregnant again. Joy. Pure joy for the first time in such a long time and they tell all their friends and family. Then it is over too. Just six short days and Miss Emily miscarries. Pain. Pain again.

Making it through the holidays and one year anniversary of the birth and death of their daughter, the Daleshires lean on one another and their friends and family. With reflection and memory they look back over the past twelve months of heartache and decide, just one more time, to try for another baby. Visions of two children playing still dance in their heads and they try to make it a reality again. Miss Emily doesn't have problems getting pregnant like the previous two times. Is this a sign that it is meant to be? She is cautious this time--guarded--as is Mr. Daleshire. They choose not to share their news with family and friends and await their first appointment with a doctor. To their surprise, they are expecting twins! Shock. Shock and hope. They shout it from the rooftop!

One month goes by. Miss Emily is nine weeks pregnant and is sick with nausea...but thrilled about it. Mr. Daleshire is supportive and caring as always. Their young son is excited to welcome his siblings. The news of twins has brought new life and joy to grandparents who have had to repeatedly watch their grandchildren die and children suffer. Coworkers and friends share in the joy. Excited to see the babies, the couple goes back to the doctor. Tragedy, yet again. One of the baby's hearts has stopped beating. More pain. How can this keep happening?

The Daleshires have lost one daughter at six days old, one baby at 4.5 weeks pregnant, and one twin at 9 weeks pregnant. They now hold their breath for the surviving twin. What will the next doctor's appointment show? How will this story end?