Tuesday, July 23, 2013

So tired

I just wish I could get a good night of sleep and feel well rested in the morning... Actually I'd much rather have my baby here and NOT be getting a good night of sleep because I'd be up feeding her every few hours... I wouldn't even complain about being tired... I would enjoy every moment of it. But since that's not possible I want to be able to sleep without the terrible dreams that wake me up throughout the night. Often it's dreams about what happened or dreams that remind me that Evangeline is not here... But last night was something different.

I had a terrible dream about my living child. I dreamt that Mariah fell into a lake. I jumped in after her and after what felt like an eternity I scooped her up and brought her to the surface. She was not breathing, and her eyes were closed just as her sister's were after she was born sleeping... So I placed her on the dock and jumped out of the water. I tilted her head back and started to breath into her lungs, while thinking in my mind, "please, please don't take her too." Thankfully I woke up before I had to see the outcome.

Isn't it enough torture that I don't have my Evangeline here?! Why must I have these evil reminders of what I don't have and what I'm so afraid of happening again? Haven't I been through enough? I know, I know.... It could be worse.... There are moms who have been through worse storms than mine... But that doesn't ease my pain... Why can't we all just have our happy fairy tale babies?

Wednesday, July 17, 2013

A broken record

I haven't written anything lately because I feel like a broken record... I feel as though all I ever say is "I miss her.... I want her here... It's not fair.... etc". But all of those sentiments are true... And I guess rather than not write, I should at least portray my true feelings, whether they are new feelings, or the same feelings over and over again.

It's so hard to feel so stuck... I feel like a car stuck in the mud... You rev the engine and think you've got a chance of getting out of the mud, only to find after a forceful attempt that you're still stuck. Some days I feel like "yea, I got this... I'm gonna have a fabulous day, and nobody will ever know just by looking at me the pain I've experienced these past two and a half months." And I make a great attempt at it... But then the next day I'm still stuck in the mud, still feeling awful and still want nothing more than to have things be different.

They say when you lose a child you never return to the same person you were before... But you will find a new normal. You will be able to enjoy things in life again, but you'll always remember where you've been and your child will still be on your mind. I think on my good days I'm working towards that new normal. I will never fully be who I was before Evangeline, and well, in ways that is a good thing. I appreciate life more, I will never take things for granted, and I will cherish every moment I get with my Mariah and any future children while still mothering my angel.

Wednesday, July 10, 2013

A sibling lost

I always wanted my kids close together in age. My sister and I were only 2 years apart, and while we had our share of cat fights, we had so much fun growing up together. I wanted that for my kids. Mariah was born while I was still in pharmacy school and there was no way I could've handled another while in school. When I graduated in 2011, I still had to worry about getting established at a job and finding a place for our family to call home, so we decided to wait a while. When we got pregnant with Evangeline I was so excited for Mariah to have a sibling. Four years seemed like a big enough age gap. Everything in my life was finally falling into place.... good job, nice house, little one on the way. I was the happiest I had been in years.

Of course things don't always end up the way we plan.... And although my Mariah is a big sister, it isn't the way her friends are big sisters. She doesn't get to play with her sister, or help feed her. She can't hold her or try to make her laugh. I feel like I cheated my daughter out of having a sibling close enough in age to grow up with. It was best for us to wait to have a second child, and it's not my fault we lost Evangeline, but I still feel so much guilt that my Mariah is still alone... especially when I see other kids her age playing with their siblings. I just want her sister here so badly... So they could both share in that bond that only siblings have.

When we have another child Mariah will be at the very least over 5 years old... What does an elementary age kid and a high schooler have in common? Not too much... And that's how far apart in age they will be. It worries me that my living children will be too far apart in age to feel that bond my sister and I had.

*Sigh* It makes me so sick that I even have to type "my living children"... No mother should have to say that... Because that means she has a child who isn't living and it's just not fair. I just wish my Evangeline was here too.

Sunday, July 7, 2013

2 months

Dear Evangeline,

Today marks two months since I gave birth to you and learned we lost you... And I subsequently lost all of the dreams I had for you. It's been a rough two months, but I want you to know that all of the pain I have endured has been worth it. You were worth every single tear... And the reason that I cry is because I love you that much. I would do anything to have you here, but since that's not possible I want you to know that I'm so grateful for the time I had with you and even if I couldn't change the outcome I would still choose to be your mom all over again even if it meant I would lose you.

There are so many reasons why you are special. I have met so many lovely people who I wouldn't have met if you didn't exist. There are so many wonderful organizations that have touched my life because of you. And most of all I have such a beautiful understanding of just how precious each day is because of you. You, my little girl, have had a bigger impact on your momma's life in the short time I had with you than all of the other people I have encountered combined.

My world fell to darkness when I lost you, but little by little I'm discovering new rays of light. But please don't take this as me getting over losing you. That will never happen. I'm just learning to survive each day and find the beauty in what I do have, I'll never again take what I have for granted.

I hope you know just how loved you are.You were created because of the love between me and your Daddy. We loved you and longed for you from the very beginning. I think of you every morning when I wake up and every evening when I go to bed. I talk to you throughout the day and see little reminders of you in everything.

I love you forever and ever.


Ps. Please visit me in my dreams

Saturday, July 6, 2013

An answer and what lies ahead

Yesterday Ryan and I had our first appointment with a maternal fetal medicine specialist. The purpose of the visit was to go over all findings and get a specialist's input on what happened to Evangeline, since my regular ob didn't really have answers besides the umbilical cord. We were also there to talk about what to expect in a future pregnancy.

First we met with the genetic counselor who expressed her condolences, asked us about our medical history as well as our families, then she asked me to describe my pregnancy with Evangeline and talk about her birth. I thought I would cry, but it was actually easy to talk to her. She asked for both of our girls' names and specifics on each of them. She then asked if we had any questions and said the doctor would be in shortly.

Our doctor came in and introduced himself to each of us. He expressed his condolences to each of us and shared that he and his wife lost a child at 20 weeks. He looked at me and said "I may not know everything that you're experiencing..." then looked at Ryan and said "But Ryan, I can understand a lot of the feelings you may be having..." It's touched my heart because I often feel like Dads are sometimes forgotten.

 He right away had an explanation as to what happened to Evangeline... He does not attribute her death to the umbilical cord. He said after looking at the pathology reports, and the size of the placenta and Evangeline he is very confident on her cause of death... Incomplete implantation of the embryo in my uterus... The final step of implantation involves the placenta, and if it does not fully implant properly it can lead to a weak placenta. This all occurs within the first 5 days of conception. A weakened placenta from this will cause the placenta to deteriorate overtime and lead to intrauterine growth restriction (IUGR) of the baby. This is what happened to our little girl... Her weakened placenta could no longer provide her with enough nutrition, it restricted her growth and ultimately caused her death. He explained that this was in no way my fault. There was absolutely nothing that I could have done to affect the implantation. A 20 week ultrasound would not show any difference compared to a healthy placenta. His trained eye can catch the changes at about 23-26 weeks on ultrasound. I had a risk free pregnancy, nothing out of the ordinary.... So I only ever had a 20 week ultrasound... They would not have seen anything suspicious at that point.

Doctor then went on to say that although I do have a slightly increased risk of IUGR in the future because of a history of it, he is confident that it was just a lightning strike occurrence since Mariah was a good size. In the future I will see my ob for regular visits, and then I will see mfm doctor as well... Basically double the doctor visits. I will get monthly ultrasounds and loads of nonstress tests. He will be following the growth of the placenta and baby very closely. We can do an amniocentesis at 36 weeks and possibly deliver before 37 weeks if it shows lungs are developed. This is important to me since Evangeline was born at 37 weeks... I will be incredibly anxious at that point in a pregnancy. He also said that if he would get any inclination from an US or NST that something is very wrong he would not hesitate to take the baby even earlier than that if he cannot guarantee the baby would still be alive the next day... A baby in the nicu at least has a chance, when a baby struggling in the womb may not.

At the end I asked him what I should do differently in the future... He looked down at this notes and said "Well Robyn, looks like you didn't do cocaine or drink alcohol while pregnant so I think you're good to go. This wasn't because of something you did or didn't do. You did nothing wrong." This provided so much relief to me.

I have found such a renewed sense of hope. I am so thankful to have this doctor as a part of our team. I fully trust him to care for me and a future baby. He not only addressed both of us by name the entire time, he also addressed both of our daughters by name while talking about each pregnancy. Recognizing Evangeline as our daughter and not just "the baby" or "the fetus" really touched my heart, because that is exactly who she is to us... Evangeline, our daughter. And although I wish he didn't have his own experience of loss, it comforts me to have a doctor who understands this pain, because I can just feel that he will do everything in his power to help us bring home a rainbow baby after this storm.

Friday, July 5, 2013

Kindness of strangers

When Evangeline was born we really didn't have much that was truly hers. Yes, her crib was set up and clothes were in her closet, but since we didn't know if she was a boy or girl we didn't get to buy things especially for her, our little girl. We didn't take baby clothes to the hospital because I figured we could make do with what the hospital had, until our baby came home with us... Unfortunately we never got to bring her home and on her birthday I didn't know what in the world she would wear...

We received a few beautiful items from the hospital that will always and forever belong to our Evangeline. A nurse left the room after she was born sleeping and brought us a beautiful handmade gown, a knitted baby hat, and a soft, pastel knitted baby blanket. In the midst of my sadness I was so overcome with relief that we had such beautiful things for our little girl.

I got to carefully dress my girl in a gown that was lovingly handsewn by a woman in Lancaster. It means so much to me to know that she spent her time and love sewing this beautiful gown for a baby who would not be going home with her family. It is such a lovely print with butterflies and flowers. My daughter looked so beautiful in her dress.

We wrapped her in a blanket that was knitted by another lovely lady in our community. She too put so much love and time into a blanket for a baby who would not be going home. It is the prettiest mix of pink, blue, yellow and white yarn and feels so soft against your cheek. I couldn't have picked a more perfect blanket for my girl.

When we were ready to leave the hospital I asked a nurse to please find another outfit for my daughter... I needed to take her blue butterfly dress home, but certainly couldn't leave her naked. She brought back a generic Carter's sleeper and I carefully took the dress off of her and put her in the warm sleeper. I wrapped her up in the hospital blankets and kissed her sweet face. As much as her dress and knitted blanket were hers, I knew I needed to take them home with me since they were two of the only things that I could always remember her by.

Her blanket and dress are so incredibly special to us. Her blanket became my lifeline in the first few weeks. Anytime I needed comfort I would wrap it around myself and cry, while taking in the smell of the blanket... It smelled like her. "Blankie rainbow" as Mariah calls it, sits on a shelf in our living room with other special reminders of our girl. Her dress is one of only two things I ever saw her wear. It is what she wore in the only pictures we have with her. A dress is exactly what I needed to be able to give my daughter to wear rather than some generic hospital onesie. I keep her dress in her room and hold it close to me often.

Lately I've thought about the two women who made these treasures for my girl. Have they had losses of their own or are they just very intune with the needs of a family going through such loss? Either way they are beautiful women who deserve to be acknowledged for their kind hearts and compassion.

Looking back I am so overcome by the kindness of these strangers. But the funny thing is, even though I only have names for these women, they do not at all feel like strangers to me... I feel as though they could see into the depths of my soul, and knew that I would need what they could provide.

Lynn and Tina, I could never thank you enough for the love you gave to my sweet baby girl and her grieving family. I do not know you, but you forever hold a place in my heart. <3

Tuesday, July 2, 2013

My shoes

Dear friend,

You will never fully understand the pain I am experiencing... The sleepless nights without a baby to make them feel worth it, the constant battle of blaming myself, the "what ifs", and even the struggle to crawl out of bed some mornings... You will never fully understand this pain, unless you experience it for yourself. Think of the worst pain you can imagine... And multiply that by a million.

For that reason, I hope you never fully understand this pain. I hope you are able to live your life blissfully happy, completely unaware as to how cruel it is to be forced to live without your baby. Comments from people who have never walked in these shoes sometimes hurt me, but I will endure that pain a million times over if it keeps you from fully understanding. As much as it hurts to sometimes feel so alone on this journey, I take comfort in knowing that my feeling alone means that you don't have to feel this way too.

But please know if now, or in the future you ever stumble into the unfortunate circumstances of truly understanding this pain I will always be here with open arms to assure you that you aren't alone, ears to listen to your deepest thoughts and fears, and an aching heart for not only my baby but also yours...

Your friend

Ps. Thank you for at least being there for me and trying to understand.