Memory Boxes and my Tattoo

I'm not sure if I've mentioned this before in a prior blog but when we lost Avery we were given a memory box. They're made and donated to the hospitals for families who've had a stillbirth or neonatal death. They're filled with things to do to make memories with your baby and some things to pamper mom and dad. It meant the world to Ethan and I and we still keep the box out in our room and look at it often. We've filled it with our own items to remember our sweet Avery by.

 Because it meant so much to me I've decided to make and donate as many boxes to the hospital as I can and I want to make them even nicer than the one I received. In this horrid times these families are going through any bit of kindness is such a blessing, so I'm really going to pamper these families. Each box I make will include these items....

• Tea
• Candy
• Blanket
• Stuffed Animal
• Envelope for lock of babies hair
• Ink Pad or Molding kit for hand and foot prints
• Johnson's and Johnson's Soap and Lotion
• Baby Washcloth
• Forget Me Not  flower seeds
• Candle
• Journal
• Pen
• Mini Kleenex
• Travel Sized Toiletries
• Disposable camera
• Mini Photo Album
• jewelry for mom
• memorial coin for dad
• paperwork on grief
• Book on losing a baby
• Ceramic trinket (such as butterfly, bird, angel, etc)
• Fuzzy Socks
• Little box for precious items
• List of foundations that can help them
• A letter from us
• ‘In Memory Of Avery’ Card
• Soaps
• Chapstick.

They're going to be beautiful and as I make them I am so proud. People I know who've heard that I'm making them have wanted to help so I made an Amazon wish list so people can donate if they want. They can buy any item they want off the list and it will ship directly to me to put in the boxes! I am so glad people are willing to do this because it means we can make even more boxes for these families in need in Avery's name! If you would like to donate, please do! The link the wishlist is http://www.amazon.com/gp/registry/wishlist/ref=nav_wish_list not only will it mean the world to me, it will mean even more to the mothers and fathers of these babies who are dying way too soon. 

I will continue to post updates and pictures as we build these gorgeous boxes and send them off to the hospitals!

Also, I got my tattoo for Avery a couple of weeks ago. It is just gorgeous, it's Avery's actual footprints and it their actual size, I just love it. I love that part of Avery is permanently on my body. I've never had a tattoo before and am SO glad I got this one! 

Thank you to everyone who has continued to keep our sweet Avery and us in your thoughts and prayers. I'm so honored that other people continue to think of and love Avery even though she's no longer on earth with us. I love knowing she will be remembered forever by not only my family and I but people around the world. What a gift my sweet girl has. 

Our Letters To Avery

These are the letters Ethan and I wrote and read to Avery at the memorial service.

Ethan's Letter: 

Dear Avery,

It’s been one month since we had to say good-bye and not a day goes by that I don’t think about you and wish you were still here with us. I remember hearing your heart beat for the first time and how excited I was. Everything started to feel so real in that moment. I was going to be a father. Weeks passed and I eagerly counted down the days between ultrasounds. Your mom and I would check her pregnancy app to see how big you were compared to various fruits. We’d started going to stores and registering for your baby shower. I couldn’t wait to meet you! Every kick I felt through your mommy’s tummy put a huge smile on my face. 

I found it very difficult to contain my excitement on the day of our 21 week appointment. We hadn’t seen how much you’d grown since 14 weeks! That excitement turned into horror when we were told that something was very wrong. No parent wants to hear that something is wrong with their baby and I never thought I would be given that kind of news. I wanted to know why this happened to us, to our baby. When the perinatologist told us that you wouldn’t live long after birth, my heart sank. All the plans and hopes I had for you were being ripped away and there was nothing I could do about it. The kicks that made me smile were now bittersweet as I knew there was only a short time before I wouldn’t feel those kicks anymore. 

Your mom and I tried everything we could do to help you. I know you didn’t like being stuck with that shunt; I can’t imagine that felt too comfortable. I wish you hadn’t pulled it out but I understand; I probably would have done the same thing. We wanted to meet you so badly and when they told us how much time they thought we had left, we knew exactly what we had to do. I am grateful for every minute we got to spend with you even though I wished we could have had many more. When the doctor placed you in my arms, all I could do was smile and look at you. You were perfect! I felt a love so strong in that moment that I find difficult to describe. I was so happy to see you and so sad because I knew there wasn’t much time. 

I handed you over to your mommy and knelt beside her as she held you. I never wanted that moment to end. She started to sing to you and I held your hand with my finger. I was so glad to have our little family together in that room. I wished there was something, anything, I could do to help you right then. I didn’t want you to leave us. I had so many things I wanted to teach you and show you. I wanted to be there for all the milestones like rolling over, crawling, walking, and talking. I wanted to know what your favorite color was or which Disney princess you liked the most. I wanted to go to your tea parties and let you paint my nails. I wanted all these things but unfortunately they are “wants” that don’t get to come true. 

It’s hard for me to not think about everything that didn’t get to happen but I am so thankful that I got to meet you and hold you close to me. I would not trade those 86 minutes for anything in the world. 

Your time with us was short, but you have changed me forever. I know that you are watching over us now and I hope I can make you proud to call me your dad. I love you so much Avery Faith and I always will. I promise I’ll take good care of mommy for you until we see you again one day.

All my love,

Daddy

My Letter: 

My sweet Avery, 

 I remember the day I first saw you on the ultrasound machine. You looked like a tiny little bean. I watched the flicker of your heart and couldn’t help but smile. My heart felt warm and I was so happy to see you. My whole self loved this tiny bean that was growing inside me and I knew I wouldn’t let anyone hurt you. I would protect you with my life, forever. 

Every single doctor appointment I had, I worried something would have happened to you but every time I was wrong and you were healthy and happy in there. The flicker of your heart never stopped. You grew and became less of a bean and more of a human. I saw your nose and your fingers and every time I fell more and more in love with you. The doctors assured me that I worried to much and you were perfectly happy and healthy. Every time I threw up with my horrible morning sickness, no matter how miserable my body felt. I smiled because that meant you were still there growing and that made my heart happy. 

 We went in at 14 weeks to find out your gender. Everyone was so sure you were a girl, including me. We chatted with the ultrasound techs and my mom, your Mamey kept making comments about how she just KNEW you were a girl. The tech quietly took pictures and pointed out things like your fingers and toes. She then told us “Okay, I know what you’re having!” I couldn’t wait to hear her say “Girl!” but she didn’t... She said “It’s a boy.” I was in shock. I was still so happy but in total shock. I think the only one in more shock than I was, was mamey. “A BOY!?” she asked in utter disbelief. The tech assured us you were indeed a boy. 

 As the days went on it sunk in that I was having a bouncing baby boy. I got excited and found all the cute boy stuff, I just had to buy for you. I was so excited for my baby shower and the day I’d get to meet you and hold you and kiss you for the very first time. The weeks went by and we would listen to your heart beat on the doppler I bought because I was so paranoid something would happen to you. Every time you had a strong heartbeat. That sound became my favorite sound in the entire world. I could have listened to it for hours on end. I still could. Back when we found out you were a boy we had your heartbeat recorded and put into a stuffed turtle. I still have it and when I feel strong enough, I’ll push the button and hold that stuffed turtle and listen to my favorite sound. 

 We went in at 21 weeks, excited for our ultrasound. Thrilled to see our baby boy Alexander on the screen. I laid down and the tech put the warm jelly on my tummy and pulled your little image up on the screen. The image was so incredibly blurry I couldn’t see much. I was just happy to see the blinking of your sweet little heart beat, there and strong. I could feel you wiggling in my tummy sometimes now so I was less worried because I knew you were in there squirming around but seeing your heart beat was still such a joy to me. After about a minute the tech seemed concerned and pointed out some things she saw that were not right. The rest of our appointment was rushed and scary. Our OB came in and told us something was really wrong with you and we needed to see a perinatologist immediately. Our doctor called the office herself so we would get a rushed appointment for that afternoon. The 3 hours between appointments dragged on it was the longest 3 hours of my life. 

The time finally passed and we got there and a new ultrasound tech took more images but didn’t say much. After that our new doctor came in, she just looked sad. She started talking and pointing things out that she saw on you... Like your kidney that was no longer functional and the fact that we had absolutely no amniotic fluid which is what was making the image so hard to read. I remember asking her “Is my baby going to die?” she looked at me with a very sad apologetic face. I knew her answer before she spoke but still waited anxiously for her to prove me wrong but she didn’t. “If you’re asking me if I think your baby will be stillborn, my answer is no... If you’re asking me if I think your baby will survive long after birth, my answer is still no. I’m sorry.” I burst into tears, this could not be happening. She explained more things and told us she thought you were actually a girl. She told us we needed to do testing but since I had no fluid we would do a procedure that was very rare called an amnioinfusion. She would put fluid in the amniotic sac to act like amniotic fluid so we could get a better look at you and then do an amniocentesis where they take fluid out and do testing on it. We came back the next day for that. 

 The weeks went on and we got hope that you would live. That was such good news. We also found out you were for sure a girl. Daddy and I did everything in our power to keep you safe and inside me growing. We did everything we could to improve your chances of life. I got shots, we also went in and put a shunt in your tiny tummy to help drain of the fluid build up. We were on a roller coaster of bad news, then we would get okay news, then we would get hope and then it would crash down to horrible news again. We were on a incline of hope after we had your shunt placed, the fluid drained out and you looked to be doing better... We went in 5 days later and hit our crash on the roller coaster, you’d pulled out your shunt and all that fluid had built up worse than it was before. We had to go see another doctor the next day. We found out then you were in distress and would not make it much longer. We were faced with the impossible decision of having an immediate C Section and getting you out alive and hoping you were strong enough for surgery but knowing you most likely weren’t. Or leaving you in there and hoping you could make it in pregnancy long enough to be taken out by C Section and be strong enough for surgery but knowing that the distress you were in would only get worse and you would most likely die in utero within the next few days. We decided to have you then, to give you a chance and to meet you alive. 

 We went in that night for my C Section. I was so terrified but also so excited to meet you. I didn’t want to have to be meeting you that night but since it was happening I couldn’t help but have the tinge of excitement about seeing your little face. At 10:07 PM on Thursday, September 25th, 2014 the most beautiful baby girl Avery Faith Selin was born. When I looked at you my heart turned to mush. I was already so in love with you and would have done anything for you, I didn’t think I could love you more but seeing you pushed that even farther. It was the most astonishing feeling I’ve ever had. When the neonatologist came to us just minutes after you were born and after looking you over and said there was nothing he could do and you would die within minutes my heart sunk. I had him give you the pain medicine and hand you over to daddy and I. A nurse handed your small sweet body that was swaddled in your animal blanket over to your daddy. I will never forget his face from the first time he saw you. I could see the overwhelming love in his eyes, the overwhelming heartbreak and the helplessness of not being able to do anything for you. He kissed you and talked to you. The nurse undid the top of my hospital gown and set you on my chest for skin to skin cuddling. Your heart rate went up and you tried to breathe. You recognized our voices and liked the feeling of my warmth. I was so in love with you. I’ve never felt that amount of love in my entire life. I would have given my life for yours in that moment. I still would.

 We were brought to the recovery room where your mamey, great grandparents and our doula all got to meet you and hold you. That time went so fast. I wanted to live in those moments forever. With you there, alive in our arms being loved and doted on. 86 minutes after you were born at 11:33 PM a nurse called time of death. You were gone just as fast as you were here. In a second you were ripped away from me, and part of me died with you. They handed me back your perfect, gorgeous little body that was still all swaddled up in your blanket. I kissed you. I wanted to scream and cry and trade my life for yours but nothing came out. I was silent. I could not scream, I could not cry and I could not give you a full life. The promise I made to protect you always was gone. I couldn’t protect you from your own body. I’m so sorry, my sweet angel, I’m so so sorry. I’m sorry if the amnio hurt you or the shunt. Most people take comfort in knowing that their baby who died before or soon after birth never felt pain, but I don’t know if that’s true or not. 

I’m sorry that we couldn’t have spent a lifetime together. I couldn’t wait for the day you said your first word, or walked. Or your teenage years where you hated me. God, what I wouldn’t give to hear your 13 year old self scream that you hate me and slam a door in my face. I’m sorry that you only got 86 minutes when you should have gotten 86 or more years. I hope you know that I loved you every minute your heartbeat. From the moment I got two lines on the pregnancy test to the last breath you drew in. I hope you know I will love you with all of myself for every second the the rest of my life. That part of me died with you that day and I will never regain that part of me. That as long as I’m alive I swear to you, you will never be forgotten. I swear that you will be missed everyday of my life. I swear thatI will not let your death be in vain. 

 I’m donating my breast milk for you. I know you would want me to do that. I want to do that for you. I want you to know that you are the most beautiful thing I’ve ever seen in my life and I’m so glad I got to meet you. If time went backwards and I knew what I do now and how everything would turn out and they told me you were dying, I would do the same thing again. In a heartbeat, every time. Just so I got the chance to meet you and hold you and kiss you and tell you how much I love you. 

Thank you Avery for coming and giving me the honor of being your mommy. Thank you for every kick and hiccup and thank you for fighting so hard. Thank you for every minute of your life. I’m so glad I got to see you and spend that time with you. You were the best 86 minutes I’ve ever had. Thank you for teaching me so much. Thank you for letting me love you and thank you for giving me the title forever of Avery’s mommy. I will hold that title near and dear to my heart always. That will always be my most important title. 

 Thank you my sweet angel girl. Just know, I’ll love you forever I’ll like you for always as long as I’m living my baby you’ll be. I will see you again someday my sunshine. Have fun in heaven and visit me in my dreams often. I cannot wait for the day I get to kiss you  once again. 

 I love you, 

 Your mommy

Kindness And An Update

 Everyone has been so sweet with the loss of Avery. A friend of mine made a page for people to sign up to bring us dinners, we started getting them a few days ago and we have meals lined up every other day for about 2 weeks. I find that so incredibly nice that people are willing to cook and bring us food to try and help us eat and not have to worry about cooking and also it reminds me to eat. Which is a hard thing to remember to do lately. We've also had two people send us gift cards for restaurants so we can pick up food.

 We also had a woman who has never personally met me (she's a friend of a friend) help set up a donation to help with cremation and memorial service costs. That was so incredibly nice, and completely blew Ethan and I away that someone would want to help us that way.

 We had a woman from our support group donate a Butterfly in Avery's name. These butterflies are metal and put up on a wall in a local hospital, the room is for families of babies who had stillborn or neonatal death babies. The money goes to keep the room going and our butterfly will have Avery's name and birthdate on it.

 People have sent flowers and called us. We've had people just call and reach out to talk to us and support us and tell us that they're here for us if we need anything. We've had people bring clothes and blankets and things for Avery, they brought them by the hospital and people have handmade gorgeous items for us to keep in memory of our precious daughter.

 I'm sure that I'm forgetting people and things but we are SO appreciative of everything people have done and are continuing to do for us.

 Ethan and I have decided that I will be donating my breast milk to a baby that needs it. We found a family and have started donating milk to them. Their son that they adopted last month needed it and I had so much, I just wanted to do something to give back and help someone in need. The local news heard I was doing this and called and interviewed Ethan and I. Which was incredibly unexpected but super sweet of them. Here is a link if you'd like to see the article and clip. They did mess up and call me Hilary a few times instead of Olivia but that's okay. http://www.abc15.com/news/region-phoenix-metro/ahwatukee/valley-couple-donates-breast-milk-after-baby-dies


 Now onto an update, we are waiting for Avery's ashes to come back so we can collect those and are in the midst of planning her memorial service which will be on the 25th of this month. We are having it at the church and then afterward having a balloon release and small meal. We think it will be a beautiful way to honor our baby girl.

 We had our NILMDTS (Now I lay Me Down to Sleep) photo's come back from the photoshoot they did of us in the hospital and they're so beautiful, I just love them. I'm going to see if I can make a slideshow of all those pictures along will all the ones we took ourselves of our time with Avery and post them for you all to see. On Monday we get the pictures our Doula took back and I'm very excited for those because most of them are from the 86 minutes that Avery was alive. Only a few of the photos that we took are from those precious minutes.

 Planning your own child's memorial service is the worst thing in the entire world. You want it to be beautiful and perfect but you also hate that you're doing it and don't even want to spend the time to think about all that it needs.

 We are grief stricken and truly heart broken but I think we are still in shock. We are mostly in this weird calm right now, we have moments of complete break downs but right now we're stuck in this raw numbing sadness. I think that will wear off after the memorial service when things quiet down. We've been really busy this last week with family and planning that it's just keeping us moving.

 I just miss her so much. This isn't fair, no one should have to cremate their child. This isn't how things are supposed to happen.

Gone Too Soon

We went in for our doctor appointment on Thursday to make a plan as to what we would do. We found out that Avery would not make it even until the next week in utero. We were told to go home and get our things and we would have the C Section that night. They would do everything they could to save her but they didn't think she would live. We were warned of all the risks of a C Section and told that even if we do the C section now she may go into distress during it and die before they pull her out.

 In total shock we went home, packed a bag, grabbed Avery's things and headed back to the hospital. We called and texted friends and family to ask for prayers. When we got checked in at the hospital we had my grandparents, Ethan's grandparents, my mom, and our doula there. Our doula helped us finish up our birth plan and hand it over to the doctors and nurses. After a few hours of prep we headed into surgery. Ethan scrubbed in and we had the plan that if they could save her Ethan would go off with her to NICU and my mom would come in to the OR to be with me for the end of the surgery. I asked them what she would look like so I could be prepared and they said for her gestational age (27 weeks) and her conditions she would probably be only about 1.5 pounds, 2 pounds if they were lucky. She would have a very distended tummy filled with fluid. She would be about 10 inches long. She would have peach fuzz all over her body but no real head hair. They also told me she may never cry because of her lungs being so small.

 After what felt like forever of getting me numb, and prepping for surgery they let Ethan in to hold my hand. We sat there terrified and on the brink of tears but also excited to meet our baby girl. After what must have been only about 10 minutes but felt like an hour they said "Okay, Olivia look up!" and over the curtain they showed us this small beautiful baby with a huge tummy and a head full of hair. She was covered in goo still and didn't look very happy. She pulled her arms up to her face and put her hands over her mouth (just like she always did in our ultrasounds) and she turned her head a little. She wasn't making any noise but she was just gorgeous. At 10:07 PM on Thursday September 25th, 2014 the most beautiful person in the entire world was born. They then handed her over to the Neonatal team to evaluate her. Ethan and I looked at each other, she was the most gorgeous thing we'd even seen in our lives.

 The neonatologist came over a couple minutes later and told us "She can't be saved. She has very little or no lung function. She isn't trying to breathe and her heart rate keeps dropping she's at 41 beats per minute right now and won't live for long. I'll give her some morphine in her mouth it won't shorten her live any but will help her pain and then bring her to you."  Our hearts broke but they brought over Avery in her swaddle blanket that we brought into the OR for her and handed her to Ethan. He kissed her and rubbed her head full of hair. We were tearing up but were also overjoyed at the sight of our baby. He leaned down and let me kiss her head and held her some more. The nurses undid my gown and said they could lay her on my chest for skin to skin.

 They set her down and my world stopped. I loved this baby SO much in utero and I didn't think I could love her anymore or love anyone anymore than I already loved her. They put her on me and I got this feeling, I can't explain it but I loved her so much. The most I've ever loved anything, maybe more than anyone in the world has ever loved anything or anyone. She was mine and she was perfect. She had the little hospital hat on and her swaddle blanket but we moved it over so she could lay her skin on mine. When we did that she started moving and trying to take deep breaths. She was taking small ones and her heart rate got higher. She liked being on my chest and hearing my voice. Ethan sat beside us as we held her and kissed her. I started to sing you are my sunshine to her and it made Ethan and I cry but she moved and she liked it. Ethan reached up and she grasped his finger and held on.

 They told us originally we couldn't have any cameras in the OR but because they thought she may die in there they went and got the Doula's camera from the waiting room and a nurse started taking photos. They let Ethan take his phone out too and we got a few. I let him hold her some more and we just laid there holding her and and kissing her over and over. They periodically were checking her heart rate to see if she was still alive but it was still there. They took her from Ethan and put her back on my chest after moving me off the operating table to the recovery bed and wheeled us down the hall into recovery to see our family. As we came down the hall I saw my mom standing at the recovery door waiting to see us when she did she started to run toward the bed. I shook my head no to tell her she wouldn't live but that she was with us. She asked me "Is she alive?" and the nurse told her yes. She started crying and rubbing her head "Oh Olivia she's beautiful!" The rest of our family gathered around and started taking pictures and cooing over her. I handed her to my mom and slowly they all got to hold her and see her and kiss her. They handed her back to me and I just kissed her and loved on her. The doula was taking pictures the whole time.

 After awhile our families decided they should go so we could have some time with her. My Opa went to get the car for my Grandy. So only my Grandy (grandmother), my mom, Ethan, the doula, Avery and I were left. My Grandy was holding her and they came to check her heart, they set her down and I knew she wasn't there anymore. They'd been checking it saying it was still there but very faint for awhile. She called time of death at 11:33. My heart was broken and still is. They handed her back to me and we cried and held her.

 After a few hours I was ready for them to weigh her and measure her so they took her and did her hand prints and some photos. She was 3 lbs 13 oz,  and 13 inches long. She was a big baby for her age. She was just stunning too.

 We got some visitors that night and then once everyone left Ethan and I just held her. We decided along with our doctors to keep her body in the room with us. This is a very common thing and she wouldn't start to break down or anything and Ethan and I needed more time with her. We had a lot of visitors the next day and got lots of memory making items. Including hand and foot prints, casts of her hands and feet, lock of hair, her hospital band, etc. We bathed her and dressed her in a couple outfits all the time just holding her and kissing her. We had Now I lay Me Down to Sleep the foundation that takes photos for families come and they got a gorgeous photoshoot with us. We get the pictures back in a couple or three weeks and I honestly can't wait for them.

 We sent her to the morgue while we slept the last two nights we were in the hospital just to preserve her body but we did have her during the day. I will say the time we got was no where near enough but having her was so helpful. We got discharged yesterday and today we have to go to the funeral home to dress her and say our final goodbye to her body before they cremate her. I know she's no longer in her body but we love her physical body and being able to hold and kiss her. I have no idea how we'll find the strength to be able to say goodbye today but I am so thankful for the time I got with my baby. It was no where near enough and Ethan and I are beyond heart broken. I will post a couple of the photos we have of her below but I'm sure I'll share more as we get them back from the doula, family and friends who visited, and NILMDTS.

 I'll post more soon, maybe a more emotional post. I don't even want to get into the emotions because I can't figure out how to express them in words yet. Thank you all for your continued thoughts, prayers, comments and offers. Someone set up a page to bring us dinners! We are so grateful! We know our first meal is coming in a few days and we're just overwhelmed with all the love and support we're surrounded with and all the love pouring in for our baby. Avery Faith Selin. She is the most perfect human to ever live on this earth. We got 87 minutes with her and that will never be enough but I wouldn't trade those 87 minutes for anything in the world.

Very Little Hope

We went to our doctor today, excited to see the shunt working and Miss Avery to have a tummy that was not filled with fluids. I'd been having some light cramping the last couple days and I mentioned that when we first got there. We sat down with our ultrasound tech who always gets some measurements before Dr. Solomon comes in to tell us what she see's and talk further with us. Our US tech knows our situation very well, she came to the hospital with Dr. Solomon and did the ultrasound for my procedure when they put her shunt in 5 days ago.

 We sat down and she put the jelly on my tummy and I could see that she was even excited to see Avery. The first thing we saw was a big tummy filled with fluid. Her face sank and she said "The fluid is back." I wanted to scream. She took some measurements and we didn't really talk much. Usually, we're in there a good 45 minutes before the doctor comes in and the US tech will leave and get her but about 10 minutes into the measurements Dr. Solomon came in on her own looking sad too. "It's all back" she said "and the skin around her neck and cheeks are swelling." She took over the ultrasound and the tech left. She said that my cramping could either be contractions or just that she is growing so fast and so am I and that my uterus is cramping because its getting so much bigger so quickly. She said she would put me on the contraction monitor and she wanted to call 3 other doctors and we would decide what to do but there wasn't much else to be done now.

 Avery pulled the shunt out of her tummy and is holding it. Literally on the ultrasound we can see her holding it and playing with it. We don't know when she pulled it out but the fluid is worse than it was before we put the shunt in and when they put the shunt in it completely drained all the fluid so she made it all back and more in 5 days. It's so much that it's starting to push her organs up and her one good kidney is starting to look like it is in trouble from working so hard, meaning it could stop working.

 We got put on the contraction machine and she called and talked with the other doctors (one of which is a family friend of mine) she came back in and told us that basically they all agree another shunt will just put Avery in too much risk to justify putting it back in and she will most likely just pull it out again or it'll get clogged quickly. That leaving her in there with the fluid will put so much stress on her lungs and organs her heart will probably stop and she will most likely be stillborn and not make it to 33 weeks like we needed her to. Taking her out now since she has so many problems could mean she can't get any surgery because she won't make it through and she will just die. Dr. Solomon says she wishes that she had a crystal ball to see an hour before Avery was going to go into distress so we could leave her in as long as possible and then take her out before her heart stops in utero. Also even if she made it to 33 weeks since her only kidney looks to be going bad could be completely dead by then and then she'll have no working kidneys and need to be on dialysis.

 I was monitored for about an hour and was having no contractions so I'm not in preterm labor. It's just cramping from growing so quickly, it's also causing pretty bad back pain but there is nothing to do about it. It's just I'm getting too big too fast.

 I'm so fucking mad (excuse my language.) I just can't believe this. We get this glimmer of hope and then it just gets torn away. I just want her to be okay. I love her so much. This isn't fair, this is not okay. This is not how this is supposed to be. I'm 27 weeks along with a beautiful baby who has a perfect brain and her body just can't keep up with all these problems and there is nothing else I can do.

 I'm going to see an OB from the hospital tomorrow she was in the room for our procedure and we will talk to her about what she thinks. We've all been talking about possibly admitting me into the hospital for the remainder of my pregnancy, however long that maybe so they can monitor her heart and then when she starts to show signs of distress we can do an emergency C Section so she is left in utero is long as possible and hopefully can get a live birth out of that. We will decide what we should do tomorrow, I think.  We have to decide if we want to have her now and see if they can do anything knowing they most likely can't but having a live birth and being able to spend time with her alive. Or leave her in there and see if she hangs on to 33 weeks but knowing she probably won't and then most likely end up with a stillbirth. How do you make that decision? Let her try to hang in there long enough so she has a better chance of living but knowing she probably can't make it that long and just letting her die or taking her out early and trying to give her a chance way too soon and knowing she probably won't live because she'll be so small but getting to see her alive? This is not fair and I'm so heartbroken. I can barley breathe I'm so mad at the world. I just want my baby girl to be okay, I just want to be able to do something for her. I would do anything to make sure she could live.

Last Ditch Effort

Our doctor called us this morning and woke me up the first call said that we had an appointment with the neonatal surgeon on Tuesday. I said that was fine and thanked them for making me the appointment. About an hour later I got another call saying that our Doctor got off the phone with the surgeon and the surgeon said that she needed Avery to get to 33 weeks along before she had a good chance of operating and having Avery survive. Our doctor said she didn't think Avery would make it that long in utero without her heart stopping with all the fluid built up in her abdomen putting stress on all her organs. So they both agreed they needed to do something and that something would be putting a shunt through me into Avery's tummy and leaving the shunt in her until birth and that shunt will constantly drain any fluid in her abdomen into my amniotic fluid and that we needed to have that done tomorrow. I asked the risks and they said that we always have risks putting a needle into my amniotic sac (the risks being that it could break my water and put me into preterm labor or give her fetal distress.) They said that the risk in not doing it though is much higher than the risk in doing this, after a lot of thought and a long talk with my doctor I agreed to have this done tomorrow.

 They said that it would be at the hospital and I'll need to fast for 8 hours. We will go into the ER and our doctor, the neonatal surgeon and another OB will all be in the room and I'll get an epidural (most likely) and some laughing gas to keep me calm and we'll go through and insert the shunt during an ultrasound and try to drain the fluid. I'll be kept overnight for monitoring to make sure that I don't go into preterm labor and to make sure that she is okay and stays calm and happy. I will not meet the surgeon Tuesday anymore, I'll just meet and consult with her tomorrow. Doing this does not ensure she'll make it to 33 weeks alive but it gives up the best chance so we can have our C Section and have an alive baby that can go immediately into surgery. That is when they'll take out the shunt as well so it will stay in her the remainder of my pregnancy.

I then got a third call from our doctor asking me to come in today and get the steroid shot to help her lungs develop quicker and it also helps with the blood vessels in her brain. I agreed and went in and got that. It wasn't too bad of a pain, my hip and butt area were a little sore for awhile but I'm okay. I'll get a second shot of this steroid tomorrow at the hospital before my procedure. I'm terrified something is going to go wrong. Our doctor showed me the shunts that she has sitting on her desk waiting for tomorrow when she will meet us at the hospital.

 Please God just let Avery get through this, let her have no distress and let my amniotic sac accept it no problem. Let these shots help her lungs and let her little body hold on for the next 7 weeks and keep developing so she can be born alive at 33 weeks with no fluid on her stomach and strong enough to withstand surgery. I am terrified for my child's life. She's been through far too much and she isn't even born yet. I'm supposed to be able to be able to protect her from all pain and evil while she's in utero and tomorrow she will feel some pain with a needle being inserted in her tiny stomach. I'm so scared, I don't know what to do. I am doing everything in my power to keep this baby alive and it still doesn't feel like I'm doing enough.

 I go into the hospital at 1:30 tomorrow and have the procedure at 3:30 and then will be there overnight. It shouldn't take more than 45 minutes or an hour to complete this procedure and we should see the fluid start to drain immediately after inserting it. Please keep us in your thoughts and prayers. She needs to get to 33 weeks, she needs to fight this, she needs to live.

Roller Coaster

So we went to see the Neonatologist on Monday. It went really well and we liked him a lot. He'd reviewed Avery's case and said that depending on her lungs he thought she had a really great chance at survival. It all depended on her lungs but if they were working everything else seemed to be fixable. As long as nothing got worse he saw good things for Miss Avery. Having more hope brought my spirits up, I couldn't help but being excited. The more hope the better.
 
 Today we went to the Perinatologist for our weekly ultrasound and consult. Last week we still had low normal amniotic fluid and this week we had actually normal fluid. It went from 8cm to 15. The range is 8-20cm for normal give or take a little. So we were looking great. We could see her extremely well and got some really cute shots of her face because we actually had fluid... Like these:

Here is Miss Avery's little face with her fist right under her chin. 

Here is a 4D image. A little creepy but you can see Avery facing the right side with her hand on her forehead. 

Here she is. You can see her cute little button nose and big lips. 

This one is a lot like the one right above it. Her little tongue is sticking out slightly between her lips. 

 We love getting these pictures of our gorgeous little baby girl. She is just the cutest little thing...

 Well then we saw and were told that her tummy still has a lot of fluid in it, from what seems to be her bowel leaking. They told us that that is probably what is causing our extra amniotic fluid. It's putting so much pressure on her bowel and making her pee a lot and causing a lot of stress on her heart. This is bad that we've nearly doubled in fluid since last week.

 We are fearing now that the fluid in her abdomen is going to put so much pressure on her heart that it will stop in utero and she will be stillborn. We could potentially drain the fluid from her stomach but they don't see a point yet if it's just going to come back in a day or two. There is no way to stop the fluid build up. So our doctor is calling the Neonatal Surgeon today and asking her what the soonest she would operate is because we have a very sensitive matter with time here. She needs as much time in the womb as possible to grow and mature her lungs but if we wait too long it'll put too much stress on her heart and that will stop. So we have to guess when the best time will be for Avery to be delivered and go into surgery.

 We were going to wait until 36 weeks to have my C Section but now that doesn't look like it's possible it looks like I could have it at anytime really. Whatever the surgeon says is the smallest she will work on her will be when we have her, hopefully she can make it that long. So really it could be anytime from about 2 weeks from now to up to 8 weeks from now. (I'm currently 26 weeks along.)

 It seems like every time we get a glimmer of hope we get shot down again and have worse news. My child has the perfect brain but her little body is failing her and there is nothing I can do but sit back and watch and wait. It's killing me, I'm so scared and so sad and I just want to help her but there is literally nothing more I can do.

They think that they will try draining the fluid off her abdomen before my C section so it's less stress on her lungs when she is born. I will get the set of steroid shots about a week before my C Section and other than those two things there is nothing I can do to give her a better shot at life. We are looking at a different hospital now to deliver at as well because it has more accommodations to operate on a baby there instead of immediately transferring her to PCH (Phoenix Childrens Hospital.)

 I'm just so tired and scared. Everyone tells me that I am brave but I don't feel brave, I just feel scared, broken and lost. This is the worst emotional roller coaster in the world. I just want my baby to be okay.  Please keep her in your thoughts and prayers, I'll take all the prayers and well wishes I can get right now.

This is Avery's abdomen. at the middle on the left there is a large white thing, that is her liver. All of the black inside of her is the fluid build up. You can see how much space that is. 

My Current Thoughts

 I have an overwhelming amount of thoughts about my child's future every minute of everyday. I go through lists in my head constantly. Sometimes I forget that anything is wrong and she kicks me and I get really excited and happy until I remember and it makes it worse. I adore her kicks still, but forgetting and then having to remember my child's upcoming fate is heart wrenching.

 I thought I'd write out some of the lists that I have going through my head at all times. 

List of the horrible and unfair things:

• My child is dying
• I cannot save her
• All my family is grieving 
• The thought of holding her little body at the crematorium and having to hand her over to them forever, knowing I'll never hold her again. 
• Having to pick out my child's urn before I've ever met her. 
• Forgetting that she's going to die and having to remember
• Watching Ethan cry
• Crying everyday
• The nightmares I have
• The nightmares Ethan has
• Faking smiles
• The stupid things people say
• Fear
• Death
• Not knowing what's going to happen next
• That other peoples lives can go on happily when the most important person in my life is dying and it feels like the world should be ending but it's not.
• Knowing I only have a few months to spend with my baby
• Preparing for everything I want her to have in the hour(s) I will have with her alive
• Life
• Seeing healthy babies and pregnant women
• Having to chose which family and friends I want to be able to meet my daughter. 

A list of some things I'm grateful for:

• Her kicks
• My doppler so I can hear her heartbeat whenever I want
• My family
• Ethan's family
• Ethan
• My baby
• The months I've had with her thus far
• The next few months
• Knowing that I'll get to hold her
• Knowing that she will see my face before she dies 
• My friends
• Everyone who has reached out in anyway

We've decided to name her Avery Faith. We will need a lot of faith in this time so I find it fitting. 

I'm typically a pretty happy person and someone who finds the good in people and situations but I'm having a ton of trouble doing that now. I find myself hating life and having horrible thoughts. This is so unfair. I would give anything to trade places with my sweet baby and for her to be given a long healthy life and me to die but I can't do that. There is literally nothing I can do to save my child. I keep being told to hope for a miracle, and I do... Trust me, I do. The doctors tell me though that the only miracle I could get is being blessed with more than 2 hours with my child alive. My miracle would be having 5 hours with a living child rather than one. That is not fair, none of this is okay in anyway. 

 No one's whole purpose in life should be to be born to die an hour later. What kind of life is that? What kind of life can I give my daughter in an hour? 

I'm sorry that this blog post is all jumbled and probably makes little to no sense. That's how my mind has been the last few days. It's something. 

Starter Post

 Everyone says I need to start a journal or blog to get out my feelings, I've always been someone who likes to write out their feelings so maybe this will be nice. Even if no one reads it, I might take comfort in having an outlet. Just a warning (assuming people are reading this) I don't intend to walk on egg shells or be "PC" in this blog; I plan to tell it like it is. So if you're offended by honesty, anger, death of babies, depression and probably occasional cussing this may not be the place for you.

 I found out that I was pregnant on April 21st 2014, my birthday. To say it was a surprise would be an understatement but my boyfriend and I took this with stride and happiness. I believe life is a gift no matter when it comes or if it was planned so I was happy to welcome my miracle into my life. I've had a miscarriage previously at 16 weeks, two years ago so I knew that could very well happen again. I was scared but decided to love my child with every ounce of my body for everyday because I didn't know how long I would have this baby. I will probably go through my pregnancy story in depth and even my miscarriage story in another post but not too much now.

 Just to sum it up quickly my pregnancy went fly fairly smoothly, a lot of morning sickness but what seemed to be a very healthy baby. We had rather frequent ultrasounds and those showed a thriving healthy baby with a strong heartbeat. At 14 weeks we excitedly went and got an ultrasound for a gender determination and were told we were expecting a bouncing baby boy. We were thrilled...

the weeks went on and we were just as excited. We got to 16 weeks and had a doctor appointment and they said my little boy was great, he had a strong heartbeat. My doctor told me all the worrying I'd done about a miscarriage or a loss was silly and how I should see that now. I started to believe her, nothing was going to happen now. I was past the point where my child had died in my previous miscarriage, nothing was going to go wrong, my little boy was healthy. 

 Come August 13th 2014, two days ago, 21 weeks exactly we had a routine prenatal appointment and Ultrasound. I woke up thrilled I texted friends and told family "We get to see the baby today!" I was so excited. We got to the appointment, my boyfriend and mother right along with me excited to see the baby who we hadn't seen on an ultrasound in 7 weeks. "Olivia" the ultrasound tech who'd seen me many a time called and I bounced up excited to see this boy. I lay down on the table to get the warm gel spread across my bump that I'd become quite proud of and the promise of seeing my little boy bouncing on the screen. As soon as she pulled up the screen I saw my baby and his heart beating away. I felt a warmth of joy and love pour over my body as I looked at the black and white image of a baby on a screen. She moved the wand around and asked if I'd had the 12 week screen for Down Syndrome. I told her yes and asked why she would ask that... She told me that the back of my baby's neck looked thick, she said it could be nothing but kept looking she looked scared. The more she looked the more worried she looked, she told us that things weren't right and told us she saw some enlarged kidneys and that my amniotic fluid was very low and she couldn't get a clear picture. She told us something was for sure wrong and would talk to our doctor. Over the next minutes we were hurried into another room and all the doctors and nurses in the office were staring at us, the OB walked in and said we needed to see a Perinatologist immediately and she just looked shocked. We were under the impression that my child had Down Syndrome or something similar. After a lot of work we got an appointment to be in 3 hours. 

 Those hours crept by... I told Ethan (my boyfriend) that if our son had Downs that we would deal with it. It was better than the alternative that babies with Downs were a blessing and it wasn't what we expected but it would be okay. He agreed. When we got to the Perinatologists office we were sat in a large ultrasound room with a woman who said she'd point basic things out but not tell us of anything she saw or didn't see medically. She took pictures for over an hour and then told us that she would get the doctor in. The doctor came in and introduced herself, sat down at the machine and started talking to us as she looked at my baby who now had the hiccups that I could not only feel but see on the screen. She told us that I had little to no amniotic fluid and that my child was very sick. I asked straight out "Is he going to die?" she gave me a sad look and said "If you're asking me if I think your child will be stillborn, my answer is no. If you're asking me if I think your child will survive long after birth I would still have to say no." "So yes? He's dying." I said "Yes" she said. I burst into tears as did my mom and Ethan looked just shocked. This was not happening, just hours ago we'd all been thrilled that we were seeing our baby and now he was dying. She explained what she saw and pointed things out telling us that our child had a rare form of a rare disease called Cloacal Dysgenesis. We were heartbroken, brought to a geneticist, stuffed full of overwhelming information and told about a procedure that we could opt to have done the next day. 

 What my child has is an extremely rare disorder with an even more rare strain of it. A pregnant mother will produce amniotic fluid for the first few months in pregnancy while the baby is developing the ability to swallow and pee. Once that happens mom stops making it and baby takes over by drinking the fluid, filtering it through their kidneys, and peeing it out. It's a big cycle. My baby did all that perfectly except my child has no openings too pee from, actually my child has no genital openings at all. No anus, no urethra, nothing. Meaning my child drank all of the fluid and it has no where to go. The bladder is overly full, forcing fluid into the bowels and enlarging the kidneys from working so hard. There is also a curvature in the spine because of this and there is some fluid surrounding the heart because of all the strain it has. She said she could see no genitalia on my child because of the lack of amniotic fluid and the position baby was on and that tomorrow we would see more. My baby has no chance of survival because not only are all those problems there but babies practice breathing with their amniotic fluid and it matures their lungs. The most critical developmental weeks for lungs are 16-22 weeks. My child had missed almost all of those weeks with no fluid meaning that they will not develop at all and that when my baby is born there won't be much air that can get through. Baby will likely live for an hour and a half and then die, that there is nothing they can do. 

 We decided that the next day we would come in for an Amnioinfusion and and Amniocentesis. Most people have heard of an Amniocentesis, where they stick a long needle through your belly into your uterus and pull out some amniotic fluid with DNA in it to test on. Those are very common. What is not very common is an Amnioinfusion. That is where the stick the big needle in and put in fluid so they can get a better picture on the ultrasound machine. So were would have a lot of liquid put in and a little taken out and then a long ultrasound to get a better look at everything going on with my baby. 

 We went in yesterday... I was nervous as hell. I'd been through hell learning my child had certain death the day prior. They put in the fluid and as we watched on the screen my baby got more room in there and a lot more visible. They pulled out about two tablespoons of liquid for the amniocentesis and then took out the needle and began scanning. What they had seen was right, my child was dying. The doctor told us that the person probably told us the wrong gender and in fact we're having a girl. That the woman probably messed up because of swelling. She said she isn't 100% sure that we will be that sure when DNA comes back but that she sees nothing boy about my baby and multiple girl things. 

 Have you ever seen a plastic bag with something in it and then all the air gets sucked out and you basically vacuum sealed the item in the bag? That's what my uterus is like with no fluid, the baby is squished and has no room.  So she had a lot more room to squirm and wiggle with the water in there and she loved it. She was kicking and moving like crazy. They told us the liquid they put in there would absorb in about 12 hours so we would probably never get another great ultrasound of her face. Our doctor lovingly spent almost an hour getting us cute pictures of our baby since we would not get this clear of a picture on ultrasound probably ever again. 

 So that was a lot more catch up than I planned on doing but that is where we are now. With the same opinion from an OB, two Perinatologist's and a neonatologist. This will continue to be about my choice to carry my daughter to term even though I know she will die and my struggles with all of this as it comes. I'm left here now numb, furious and heartbroken. 

 Sorry if there were a lot of grammatical errors in this, I did not feel like proof reading.