The Whole Story

All of Analiese’s story is already written. It is here, on my blog, for the whole world to see. I’ve been open and honest about every moment of my heart break. But it is not my entire story. There is more that I haven’t shared, because I’m fearful of the reactions. I understand that this is the Internet, and that people are free to say and think what they want. But please, be mindful of my family and others in similar situations. No part of this is easy.

When we received the diagnosis of Trisomy 10q, the genetic counselor recommended that my husband and I undergo testing to see if we are carriers of her condition. It was a simple blood test, and we agreed. 2 weeks later the results were in. My husbands results were perfectly normal. I however, was not so lucky. I am the carrier of her condition.

You might be wondering how that is possible. Afterall, here I am alive and perfectly healthy. It is a little complicated to explain, so I’ll do my best. Basically, Analiese had too much genetic material. I have the right amount of genetic material but it is in the wrong places. That is called translocations. When a parent has translocated chromosomes like I do, that puts the babies at risk of too much or too little genetic material. I have 3 translocations, which means there are dozens and dozens of potential outcomes for our children, all of which are equally deadly and devastating.

This leaves us with two options. Option 1 is to continue to get pregnant naturally, and do the genetic testing. If the genetic test reveals that the baby has genetic problems like Analiese then we will be in the same nightmare cycle that we just lived through. I can’t continue to feel and watch my babies grow, only to hold them while they die.

Option 2 is IVF and pre-implantation genetic screening (otherwise known as PGS). PGS allows us to create an embryo and test it for these chromosomal disorders before it is implanted inside me. We don’t know how long it will take to get a viable embryo, and it is expensive. Very expensive. And of course, our insurance doesn’t cover any of it.

So this is the rest of our reality. We’re mourning the loss of our precious baby girl, and we don’t honestly know if we will ever be able to bring a baby home. It all depends on when we’re able to save enough money (well over $30,000) and how many embryos it takes to get a viable baby.

We don’t consider this lightly. It is heartbreaking either way. But at least with IVF, I have a chance to bring a baby home. The agony I feel over this cannot be explained or truly understood. My daughter is dead because of my genetics. It is my fault, even though I would do anything to change it. Even though I never asked for this, the blame lies with me. I miss her more than I could ever put into words.

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Wow

This last week has been incredibly surprising and more than slightly overwhelming. I never expected for my simple thank you to the Fairy Godmother to have spread so vastly and quickly. But I’m thankful for it. I’m thankful that people know my daughter’s name and story. I’m thankful that a light is now shining on families like mine, who have experienced a perinatal loss. Because families like mine need help. I’m lucky. I got pregnant, and therefore experienced this nightmare, here in Maryland. The reason that is lucky, is because of the support system that has been cultivated here. My doctor’s office, Annapolis OBGYN, referred me to my specialist, Center of Maternal Fetal Medicine Annapolis, who in turn referred me to my counselor, SilverLeaf Services. They worked together to bring me to the resources I needed so that I could enjoy my last weeks with my daughter. Without this kind of team working together, in conjunction with the labor and delivery nurse Annie O’Sullivan, there is no way I would be in the same mental and emotional place without them. There needs to be MORE systems like this all over the country. I am terrified to get pregnant again, and I’m even more terrified that it will happen somewhere else. Somewhere I don’t have access to CMFM Annapolis, and my counselor, and Annapolis OBGYN. This could have happened to me while we lived in NC, or when we lived in GA. And I’m unable to imagine what the results of that would be. My counselor, Heather, and my labor and delivery nurse, Annie, did and are still doing so much to help me. I don’t have the words to explain or thank them. Everyone that has lost a child, or is facing the loss of a child like I was, needs a Heather and an Annie. I hope that my story going viral has helped the medical community open their eyes.

Thank you, everyone, for the kind words and for reaching out to me when my story touched you. It helps more than I can explain, to know that Analiese has impacted all of you. For those that think I’m weird and creepy by having my daughter’s ashes inside the teddy bear: all I can say is I hope you never learn how it feels to hold your child as they die. Many of the articles have twisted my words, so I would like to set the record straight. I do not talk to the teddy bear as though it is my daughter. I don’t force people to interact with it, nor do I trick them by not telling them what is inside. The Fairy Godmother was a wonderful compassionate woman who UPON HEARING that my daughter’s ashes were inside the teddy bear, treated the bear as though it was a child. And that is what meant so much to me. She acknowledged my grief. I understand that it is the internet, and people will always talk shit. But in case it was due to a misunderstanding, at least now you know the truth.

My daughter is dead, and that is something that I have to live with every single day. Carrying her ashes doesn’t make me crazy, it makes me a grieving mother. I’m not delusional. I’m not in denial. I’m just grieving. And grieving is hard.

For all the parents that have extended their condolences, and told me of their own loss, I am so sorry that you have experienced the same pain I have. All we can do is try to move forward.

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An Open Letter to My Daughter

March 11, 2016

Dear Analiese,

I can’t believe it has been an entire month since I last felt you kick inside me. Today should be a day of celebrating you. Instead I feel like my grief will crush me. It has been a month since the end of those 85 precious minutes. I’m thankful for the time I had with you, and did not take a single one of those minutes for granted. But I want more. I want to feed you and watch you grow. I want to teach you how to dance, and laugh while your daddy tickles you into submission. I want to watch you discover your love for reading, and your love for video games because we all know you would have loved both. I want to teach you what good music is, and see you discover the magic that lives within the Harry Potter series. I want to take you to Disney World and watch as you get swept away. I want to see you graduate high school and college. To watch you meet a man and fall desperately in love, like I am in love with your daddy. I want to help you plan a spectacular wedding that is exactly you. I want so much more than those 85 minutes.

My arms ache with how empty they are. I held you 27 days ago, but it feels like a lifetime has passed. My soul has aged hundreds of years without you. I’m weary and I miss you more than I could ever explain.

I hope you are happy where you are. I hope your grandmother and great grandmothers are spoiling you rotten, while your great aunt is playing tricks on you like she did on me. I hope you are getting into all kinds of mischief with your cousin, and making the angels crazy trying to keep up with you. I hope you’re happy.

Because I’m not. And neither is your daddy. It hurts to breathe without you, but we keep doing it. We don’t have a choice. Please know, we did absolutely everything we could, angel. And we love you more than we love our own lives.

You’re beautiful.

Happy 1 month, baby.

Love, Mommy.

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Yet another update

I never know how to begin these blog posts. I feel like I’m just writing yet another update on the misery that is my life currently. But we receive text messages daily checking in on “how we’re doing”, so I feel like it is necessary. At least, it makes my life easier to just update everyone at once.

So how are we doing? We’re surviving. We wake up every day, and eat breakfast and then proceed to attempt to be distracted from our heartbreak. Stefan plays video games. I begin and reject at least 3 different TV shows, 2 different books and a movie. I usually end up just laying on the couch, in Stefan’s lap, snuggling Analiese’s bear, doing absolutely nothing. I feel numb right now. I can go large periods of every day without feeling any emotions at all. And then I feel guilty, because I’m not actively sad, so I look at her pictures. And then I get overwhelmed with grief, and snuggle her bear harder.

Most of the time, it doesn’t feel real. Physically my recovery is easy, and I fit in all my pre-pregnancy clothes. There’s nothing physical to remind me that my daughter was born, and died, 13 days ago. It’s all emotional. So when I have those moments of sweeping grief, I feel guilty on top of everything else that I’m not overwhelmingly sad all day every day.

On Monday, Stefan and I went to Lasting Tributes and picked up Analiese’s ashes. Yesterday we went and had a friend’s mom open up the back of her bear, and put her ashes inside it. So now, when I snuggle her bear, I’m able to snuggle my daughter as well. Not the way I desperately want, but better than nothing.

Someone recently described grief as waves. Some of them you can jump over, and some of them knock you flat on your back and make you feel like you’re drowning. Most of the waves I’m hit with are the latter.

There isn’t words for what we feel, or how we’re doing. We are just taking every day moment by moment until it is time to go to bed, and then we do it all over again the next day.

I’m still pumping, and I’m almost finished with the process so that I can donate. I average about 25 ounces a day now, and it still lifts my spirits, knowing that Analiese’s birth has given me a way to help so many babies. I’m not gonna lie though, I’d rather be feeding my baby.

So Many Thank Yous

There are seriously no words to express how thankful Stefan and I are to have all of you in our lives. You’ve shown how much we mean to you, and how important Analiese is every moment since we announced her genetic condition. And some of you have gone above and beyond by sending flowers, gift cards and care packages. Every delivery leaves us more and more speechless.

Today, however, we are absolutely floored by the lengths some wonderful ladies have gone to to ensure Analiese’s mark on the world. Not only did they have an adorable glass engraved at Disney World with her name, they went through the International Star Registry and had a star renamed after her. I didn’t realize that you could actually do that, and now there is a star that will forever be named Analiese.

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Thank you everyone so so much for making sure that Analiese is never forgotten. Your love and outpouring of support is something Stefan and I will never be able to thank you for, or repay.

Decisions and donations

The past few days have been the hardest days of my entire life. I wake up and feel empty, because my little girl isn’t here to cuddle and snuggle. Time stopped while I was in the hospital, because even though my baby only lived 85 minutes, she was still with me. I don’t have that anymore.

I have made a decision that is helping me through the worst moments though. I’ve decided to donate my breast milk to a milk bank that only uses it for NICU preemie babies. This is emotional for me, but it also lifts my spirits. You see, I’m a production machine. In 3 days I’ve been able to freeze about 30 ounces of milk. By doing this, I am able to help sick babies, and that feels really good. But what feels even better it that Analiese’s life is contributing to something positive. She has enabled me to do something positive and give my baby a legacy by helping other babies live.

It’s going to be hard, because I want nothing more than to feed by baby. But I truly believe that it is going to be worth it.

What we need

I’ve received so much love and support from everyone throughout this whole process. This is truly the hardest thing I will ever deal with in my life, and while nothing and no one can make it easier, the people surrounding me have definitely helped make it not harder.

The top statement of the day is “let me know if you need anything, or if I can do anything for you”. And I know they mean it. I know absolutely that if I called any one person and said “I can’t face cooking right now but I’m hungry” food would magically appear at my door. And I might be asking for that soon. But right now, that’s not what I need.

I need someone to bring my baby girl back to me. It’s that simple, and that impossible. You see, I had to leave her today at the hospital and go home. And I left her in the best possible hands. But they aren’t MY hands. Or my husbands. And I don’t know what to do with my arms and heart so empty.

My daughter is beautiful and precious, and she has impacted everyone that met her or that has read her story. But she hasn’t impacted anyone as much as she impacted me and her daddy. Our lives will never ever be the same. And we want her back. I want to love on her while I fall asleep. Sleeping is so hard without her kicking me inside my belly, or held close beside me.

I have no physical proof that I carried her. She was so small, I don’t look like I just had a baby. And I want to so desperately. I want people to KNOW that I am a mommy to a beautiful angel. I have no stretch marks. No scar. Nothing to prove she existed except for pictures and her story. Analiese Claire is the best thing I have ever done. And I need her with me. Her daddy needs her with him.

This isn’t fair. But it is my awful reality.

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I love you so much, my sweet angel girl. I did everything I could, but it wasn’t enough.

Introducing Analiese Claire Murphy

Analiese Claire Murphy was born on Thursday February 11th, 2016 at 10:29pm. She weighed 3 pounds 1.7 ounces and was 15.5 inches long. She’s the most beautiful baby I have ever laid my eyes on. My beautiful daughter passed away at 11:54pm, an hour and 25 minutes after her birth. She spent every second of that 85 minutes enveloped in my arms, or in her daddy’s arms. All she knew is love, and adoration, and peace.

The rest of this blog post will be her birth story, and I’ll post a few pictures at the bottom. More pictures will be available later once our friend finishes uploading them for us. Analiese Claire lived on this earth for 85 minutes, and she was determined to meet her mommy and her daddy. She deserves to have her story told.

The original plan was to call the hospital at 11:15pm on February 10th, 2016 to make sure there was space available in the labor and delivery ward. Assuming the answer was a yes, we were to check in at 12:15am on February 11th. Well, we all know what they say about the best laid plans. After spending the entire day getting ready to go to the hospital and having our anxiety grow, when I called at 11:15, there was no space for a planned induction. The hospital said that they would call me once some rooms started opening up. So off to sleep I went. At 05:40 they called me and said that I could come in. So after getting dressed, packing the car, and a quick stop at Chick-Fil-A for breakfast, we arrived at the hospital at 7:20am. General checking in and such went pretty quickly and we sat around waiting for my doctor until 9am. Poor lady had a c-section scheduled first thing when she got to work. So by 9:10am I received my first dose of Cytotec. Up until this point I had not had any contractions other than braxton hicks, so we are really starting my labor from scratch. My doctor, Dr. Hays, tells me that they will check my progression every 4 hours, and that I will get another dose of cytotec then.

The first four hours were pretty uneventful. I began cramping, which was a good sign, and Stefan and I played cards. He kicked my ass, as usual, at Egyptian Rat Screw and Rummy. I was slowly getting more irritable, which always means I’m getting more and more uncomfortable. At 1:20 Dr Hays came back and checked my dilation. I had progressed to 1 cm! She was pleased that progression had happened, and gave me my second dose. Stefan and I decided that we needed to catch a nap, so we laid down around 2. I was up by 3:30, conceding defeat. I was cramping too badly to sleep. Stefan, of course, was snoozing away on the couch. I called my nurse, Annie O, and asked for the birthing ball. I sat on it for a little while, and tried to read but it just wasn’t enough. So I got dressed and went out to the nurses station to pace and chat. I really love the nurses here, so if you are looking for a hospital to deliver at you should just come to Anne Arundel Medical Center. I have only had wonderful experiences with the nurses and staff. They’re awesome.

I chat with Annie O, Anne, and another nurse for about 45 minutes, and then decided to wake up Stefan because it was ALMOST time to get checked again. At this point I was looking forward to getting checked because I fully intended to ask for an epidural. My thoughts were that I was either progressing enough to need one, or I wasn’t progressing enough but I was in too much pain to endure it at this slow of a pace. I was getting the drugs, regardless. The good news is I was still progressing. I was at 2cm and about 80% effaced. I was a little worried I would slow down progession by getting the epidural too early, but my doctor assured me that even if it slowed down a little, it would still be okay. So I got my 3rd dose of cytotec at 5:15pm and I had the epidural in place by 6:00pm. And let me tell you, that was the best decision of my LIFE. The contractions were so bad I couldn’t stay still during them at all, so the epidural was a little scary but it all went perfectly. After I got the drugs things really started rolling along.

My mom got here around 6:30 and helped get things settled in the room. We played more Rummy and mom was actually beating Stefan. I love watching him lose a game because it very rarely happens. Dr Hays checked me again at 7:45 and I had progressed to 3cm and 100% effaced. She also put in a UPC (I think) to give a better picture of how my contractions were progressing. I text my friend Leanne to go ahead and head this way. Leanne arrived by 9pm, she was our acting photographer. I cannot say enough about how amazing she was. She is not a photographer, at all, but she has a fancy camera and a loving and giving heart. It was wonderful to be able to focus on Analiese and Stefan without worrying about missing a moment of our limited time together because we were focused on taking a picture. She was spectacular throughout the entire evening. We all sat and talked for a little while, and I noticed that my epidural wasn’t working in one spot on my left side. I could feel my contractions pretty strongly. I called Grace (who was my nighttime nurse. Shift changed happened at 7pm), and she told me about the bolster button for my epidural. MAGIC. I hit the button, laid down on my left side, and within 15 minutes it was all numb again. Hooray!

Around 10pm I started feeling a ridiculous amount of pressure in my vagina with every contraction. (That is a direct quote.) Grace came in and called Dr. Hays to come check me again. Turns out, Analiese was crowning. It was time to have this baby. Everyone jumped into action mode, and I’m laying in the bed with dead legs, wondering how I’m supposed to take off my tank top and bra with an epidural in my back. Whoops! Grace helped me get squared away, and Stefan got a gown on top of his clothes so he could hold our baby girl. A few minutes later we were ready for me to start pushing. 2 and a half contractions later, Analiese had her head out completely, but the cord was wrapped around her neck fairly tightly, twice. Dr Hays untangled her, and I pushed her the rest of the way out.

Analiese immediately began to cry, but instead of a baby’s cry it was a soft squeaky sound. They put her on my chest immediately and covered her up with a warm blanket. Stefan leaned in, and we both just listened to her soft squeaks. Dr Hays delayed the cord clamping like I asked, and I truly believe it made a big difference in the lifespan of my daughter. I don’t remember exactly how the rest of everything went. I know they asked me to push again to birth the placenta, but everything was very much so in the background. My entire focus was on Analiese, and Stefan. I was so amazed that she came out so strong. I’ve known she was a fighter throughout this entire pregnancy. It was shown at every weekly appointment when Dr. Sweeney was shocked that she still had a heartbeat. He eventually began to expect it because my daughter defies all expectations. She was born with a heartbeat and breathing, something that none of my doctors expected. My daughter kicks ass.

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I remember passing Analiese to Stefan so he could hold her, and she was still with us. He sat in the chair, and then he got into the bed with me and held her between us. We played “pass the baby” back and forth, because we each wanted the other to have enough time with her while she was still with us. Around 11:40 Stefan had the brilliant idea to play our song. For the past few days we had been searching for a song to fit this situation and just couldn’t find one that fit perfectly and that we loved. Then it dawned on him and we couldn’t believe it took so long. It is our song for our relationship, and it fits our situation in that moment perfectly.

“I don’t want this moment to ever end where everything’s nothing without you. I’ll wait here forever just to see you smile, ’cause it’s true I am nothing without you. Through it all I’ve made my mistakes I stumble and fall. But I mean these words. I want you to know with everything I won’t let this go. These words are my heart and soul. I hold on to this moment you know, ’cause I’d bleed my heart out to show that I won’t let go.”

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We both had a feeling that it was time to have her heartbeat checked again, and called for Grace. She had Dr. Hays come in to verify, and Analiese’s official time of death was 11:54pm on February 11th, 2016. She spent every minute of those 85 minutes in arms that love and adore her. Stefan and I cannot believe how lucky we are to have made such a perfectly beautiful little girl.

I’m sure at this point you’re wondering how Stefan and I are doing. And answering that question is really hard. We’re shattered, but Analiese is still with us in the room. We’re still at the hospital, and Analiese will stay with us until we check out tomorrow. It’s easy to fool ourselves into thinking she is just asleep, but she isn’t. And I don’t think it will truly hit us until we go home with empty arms.

We had a photographer from Now I Lay Me Down to Sleep come today and take professional pictures of Analiese. They are such an amazing organization, and took fantastic care of Analiese today. I don’t have the words to show how much appreciation I feel for them, or for the nursing staff here at the hospital. They’ve taken amazing care of me and of Analiese.

Thank you everyone for giving us time and privacy to grieve. We are dealing with the hardest thing we will ever have to face in our entire lives, and are leaning on each other heavily right now. We love you all, and thank you for your thoughts, good wishes, and prayers. Keep it up, because we need them more than ever right now. My daughter left us way too soon, and we are not okay. But we are surviving, and will continue to survive. We don’t have a choice.

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Analiese after her bath, dressed in the outfit I made for her. 

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My mom holding her precious granddaughter, wrapped in the blanket I made for her.

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I love my angel baby girl.

Final Countdown to Analiese

So many of you guys have expressed love and concern for me and Stefan during this horrible time in our lives, and we thank you so much for keeping us in your thoughts. I decided to write this blog post so that everyone has the same information about Analiese’s upcoming birth.

I’m 37 weeks pregnant now. Stefan and I have had long talks and debates with each other, and my various doctors, and have decided to schedule an induction for Analiese. I’ll be admitted into the hospital at 12:15 AM on Thursday, February 11th. This was not an easy decision, or one that we made lightly, but we do feel that it is in the best interest of Analiese and ourselves. We do not know how long we will have with Analiese, if we get any time at all, so PLEASE allow us this time with her without interruption. We will inform everyone about her birth and passing when we are ready.

I’m scheduled to deliver at Anne Arundel Medical Center in Annapolis, MD. If you want or need any other information please message me and ask before Thursday. Stefan and my mom will both be preoccupied alongside me, so they will more than likely not be answering their phones.

I feel like a time bomb is ticking, counting down to the worst day of my entire life. I’m surviving, but that is really all I can stretch for right now: survival.

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This is a sneak peek of the maternity photos we took on January 31st. I was 36 weeks. We’re doing our best to enjoy our last days with Analiese.

Final Analiese update

2015 has been the biggest emotional roller-coaster of my life. The year began great with college, finding a fantastic job that I love, and FINALLY taking a vacation with my husband for the first time. I got to visit Disney World, Harry Potter World (better known as Universal Studios for those that aren’t obsessed), and see my best friend in her new home in Florida. If you had told me then that I would end the year this way, I would have called you a liar.

Shortly after our vacation, Stefan and I found out we were pregnant. We had been trying and were so ridiculously excited. The amount of joy in our home was off the charts. We are trying to find some joy in the rest of the pregnancy, but it is hard. When most families are excited about the end of pregnancy drawing near and FINALLY meeting their babies, Stefan and I are terrified. I want to stay pregnant forever, because while I’m pregnant, my daughter is still alive. There’s no guarantee that she won’t self-abort near the end of the pregnancy, but her chances in utero are a hell of a lot better than after birth.

This will probably be the last medical update on Analiese until I post and let you know about her birth, and her passing. Stefan and I went to the Children’s National Hospital yesterday. It’s the best children’s hospital north of Scottish Rite in Atlanta, and we were there 9 hours having tests done and discussing our case with the various specialists. Pretty much every question we could possibly come up with was answered yesterday, and so the future is a lot more clear than it was, although entirely heartbreaking.

We had a fetal MRI, ultrasound, and another fetal echo-cardiogram done yesterday. The fetal MRI took in depth pictures of Analiese’s brain, and was able to photograph other organs that have been not been clear in ultrasounds. The ultrasound gave another perspective of all of her organs, and the fetal-echo gave us the information about her heart. It isn’t good news.

Analiese has 3 heart defects called Tricuspid Valve Atresia, Ventricular Septal Defect, and Hypoplastic Right Ventricle. Basically, this all means that her right ventricle didn’t form, and there is an extra hole in her heart that is allowing the blue and red blood to cross. There’s a bunch of other medical mumbo-jumbo that you all can feel free to google, but the moral of the story is it would take 2 surgeries to fix. If this was the only thing wrong with her, then I would be writing an entirely different blog post right now. But it isn’t.

The MRI showed us everything else that is wrong with Analiese. She has a midline brain defect called A Genesis of the Corpus Collosum. Basically that means that the connections between the left and right hemisphere didn’t form, and the two sides of her brain are not talking to each other. Her brain also hasn’t formed correctly. In a normal infant, the brain begins as a smooth surface, and during development it folds on itself symmetrically over and over. Her brain began folding, but it does not have the amount of folds that they see in normal brains. It appears as though her brain development is multiple weeks behind. If this happened in an otherwise perfectly healthy child, that child would have severe mental retardations, and likely would never be able to do anything independently. Her brain is also smaller than it should be at almost 32 weeks.

Analiese has also developed plural effusions (hydrops) in her chest around her lungs. Her lungs are much smaller than they should be, and her chest is very narrow. Too narrow to accommodate mature lungs. Her lungs will likely never mature enough to be able to support life.

We have known about her left kidney being cystic, but her right kidney has also developed a cyst. Due to the amniotic fluid being almost non-existent, the doctors believe that her kidneys are no longer functioning at all.

All of this can be linked back to her genetic abnormality diagnosis of Trisomy 10 Q. The doctors are still surprised that she has survived this long with such a large piece of extra genetic material. Before our appointment yesterday, we believed that the only thing that was killing her was her heart defect. We now know that isn’t true. If she survives until birth, she may not take a single breath. The plural effusions are concerning, because it means that organ systems are shutting down. IF more begin to form, then that could be a sign that she is about to self-abort. We are also at risk of not having any warning until the doctor cannot find her heart-beat. And with all of these organ systems not functioning and not forming, the best we can hope for is a few breaths at most.

This is our reality. We are trying to find joy in the moments we have with our precious daughter. But it is hard. 2016 is going to begin with emotional turmoil and trauma and there is nothing that we can do to change it. All we can do now is love our little girl for as long as humanly possible. I go for weekly ultrasounds to check in on her and make sure she is still fighting, but we are not likely to find out any more new information. We will have a memorial for her with our friends and family, but probably not until the summer. Stefan and I need time together, alone, to grieve and to deal with our heartbreak. Thank you all for supporting us and keeping us in your thoughts.