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

The Loves of my Life

 Today is my amazing Ethan's birthday. I am so incredibly lucky to have him in my life. I learn that more and more everyday and I fall more in love with him everyday as well. No matter what happens he's always there for me and loves me through it. When I'm having a horrible time and sobbing and can barley stand living without our baby he's there to hold me and kiss my head and help me. Even though I know he's grieving and feeling just what I am too, he's there whenever I need him. He's been working so so hard lately and today he had the day off and I've been determined to make his 22nd birthday a good one.

Watching the love of my life hold the other love of my life; our baby for the first time, melted my heart. It made me fall so much more in love with him. I will never forget the facial expression he had while he held her. It was pure love but also so much sadness. We'd just been told she wouldn't live and they couldn't help her. He was looking at her and I've never seen anyone look more in love in their life but his eyes were welled up with tears of sadness, heartbreak, and helplessness. He pulled her up closer to him and kissed her little face "I love you, Avery" he said. He brought her over to me and said "Olivia, this is our baby. Look at her!" I was in shock and was just as in love as he was. Our little family was all together, holding each other in the operating room. The nurse asked if I wanted to do skin to skin and I did. She undid the whole top of my hospital gown and laid my baby girl on my breast. She started squirming and breathing and her heart rate went up. I sang "You are My Sunshine" to her and she squeezed Ethan's finger. He had his other arm rubbing my hair. We were together and I knew I could never love another man more than him and that I loved our little family more than anything.

 The feeling I got when they set my little baby girl on my chest was the most overpowering love I've ever felt. It was the happiest I've ever been but also the most heartbroken I've ever been too. All at the same time.

 I learn more everyday how lucky I am to have been blessed with these two in my life. Avery has taught me so much about life. I'm really having a shitty time dealing with her death but I'm so grateful for all the time I got with her. No matter how short. I love her so much. I'm so lucky to have Ethan by my side for our whole grieving process and my whole life.

 Happy Birthday Ethan, thank you for everything you do for me. I don't tell you enough how grateful I am to have you. Our baby girl was so lucky too, to have a daddy as amazing and loving as you are. I love you and Avery more than life its self and would do anything for you two.

Here is Avery's Birthday Card to her Daddy... 

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.

Play by Play Of My Procedure.

I had my procedure/surgery on Friday. I had to start fasting completely 8 hours before the procedure which doesn't seem like it'd be hard but try telling a pregnant girl she can't eat or even have a drink of water all day. I don't know if it's a normal pregnancy symptom but I get incredibly dry mouth and have to drink water all day, is torture. Being that my surgery wasn't until 3:30 in the afternoon I was dying of thirst all day long. We were told to get to the hospital 2 hours early so at 1 we packed up the car with my overnight bag and all our paperwork and Ethan, my mom and I headed to the hospital. When we got there and got to the L&D Triage floor where you check in a doctor was there asking if I was there yet, saying they were ready for me early. They signed me in and said only one person could come back to triage with me so my mom went to the waiting room and Ethan and I went back into the pre-surgery triage area. Immediately they had me leave a urine sample and change into a hospital gown, by the time I was done with that they were back asking questions and hooking me up to the doppler to hear her heart rate and taking my blood pressure and all the standard hospital things. Everyone always complains about the hospital taking forever and having to wait around but we didn't wait for even 5 minutes.

 After they got the initial things they came to give me the second shot for her lungs and brain development. Then they started my IV and took 6 vials of blood and hooked me up to a huge bag of saline.  They kept asking questions and feeling my stomach to find her body and asking if I was in pain or had any signs of labor. Then the anesthesiologist came in and said that he'd never seen one of these surgeries but one of the OB's said to give me a spinal just like a C Section and something in my IV to keep me calm and warned me that I'd probably be sleepy. I said that was fine and we shook hands and he said he'd see me in the OR. Then came in Dr.Solomon (my perinatologist) she said she'd gotten their early and was ready to go. She had the shunts in a bag in her purse and said she wanted to go talk to all the other doctors. Then came in the neonatologist saying that if we went into labor he would take her and do everything he could to save her. Then came in the OB that would be doing the C section if we needed one and she introduced herself and made some small talk. Then came in a medical student to explain all the risks of a C section and all the risks of this procedure and make me sign papers. More nurses came in and were giving me antibiotics in case of infection in the IV, and pumping me full of medicines. One nurse came and gave me 3 medicines I needed before a spinal, one I can't remember the purpose and two were so I wouldn't throw up. Two of them went into the IV and one I had to drink, it was the most foul tasting liquid ever especially after having such a dry mouth all day. More doctors and nurses came and talked to us about everything they were doing and everyone we would see. The neonatal surgeon came in and said she still thinks 33 weeks is the best but if anything were to happen she would try her best and no matter when Avery is born she will try her hardest. While all the doctors were talking I got this reaction to one of the medicines they put in my IV and my nurse said it was a really rare reaction but she'd had it before and knew how horrible it was. I felt like I was going to jump out of my skin. I couldn't hold still my legs hurt and and I was incredibly anxious. She said to try and take deep breaths and that is lasted about 20 minutes. I could barley focus on what people were saying to me and I just felt horrible. The nurse came back with IV benadryl (which works way better than the pills you take at home) and within 5 minutes it did start to calm me down and make me feel less anxious and jittery. I was so glad she'd had the reaction before so she could empathize with me and knew what to give me, I was already so nervous to have the surgery the last thing I needed was this reaction going on for 20 minutes.

  Dr. Solomon came back in at this point and asked Ethan and I "If we're in there and fetal distress starts and we can't stop it. What do you want us to do? Do you want us to just leave you here and most likely she will die and then induce you to have a stillbirth or would you want us to bring Ethan into the OR and have an emergency C Section and try to give you a live birth. There isn't much we could do if she was born alive she's too tiny and would probably die but you would have a better chance at having a live birth, though it could still be a stillbirth." We knew this could happen and that it was a possibility of having this procedure but hearing them say it like that really freaked me out. They said there was about a 20% chance (maybe less) of this happening but it was always an option and we needed to decide now before I had all the pain meds and we were in the middle of a crisis situation. I got really overwhelmed and started to cry a little bit but Ethan and I agreed we wanted every chance of having a live birth so agreed on the C Section.

 They said they were almost ready to go into surgery then, we'd been there for 2 full hours and didn't have more than 2 minutes of a breather. I asked if I could switch out Ethan for my mom so I could see her for a few minutes before they pulled me into surgery and one nurse said we went right past the waiting room and they would stop and let me see her. The doctor chimed in that they could sneak her back there for me without taking Ethan out and a few minutes later she and my Grandma showed up in the room. I asked for a few minutes to talk to them and we all nervously chattered and I caught them up on the last two hours they'd missed. After a few minutes they came in to get me and we all caravanned to the OR (or for Ethan, my mom and my Grandy they went to the waiting room.) While we were walking a nurse gave Ethan all the clothes to put over his clothes for the C Section and told him to put them on now so he was ready if they needed him, after that everyone I loved was gone and it was just the nurses and doctors and me. We stopped so everyone could get their scrubs on and so they could put a hairnet on me and the shoe booties on my feet even though I was barefoot.

 They got me up and had me walk into the OR, which looked nothing like I imagined it was. It was small and crowded and just nothing like I'd imagined or seen on TV. They put my "cocktail" as they called it into my IV and said it would make me woozy that it was a mixture of morphine, and a couple other drugs that I don't remember the name of and then they had me sit forward and hug a pillow and put my head on a nurses chest so they could give me the Spinal block. After that I laid back and everyone started rushing around to get ready. They set up the Ultrasound machine and all the tools, gave me oxygen, and one of the nurses was trying to make small talk with me. They put up the curtain so I couldn't see what they were doing to me and then said I'd feel pressure because they were giving me a catheter. Next Dr. Solomon came and told me that they were going to start. By now I was feeling pretty heavy. I could think clearly but speaking was hard and I felt kind of lost. The rest of it is all kind of jumbled in my memory. I remember Dr. Solomon showing the Neonatal Surgeon all of Avery's problems they've seen and people commenting on all the fluid in her tummy. I then remember a nurse saying I should try and close my eyes but I was too scared. They then said I'd feel pressure and thats when they did their incision and poked the large placing needle and shunt in. After that is when it got scary.

 All the nurses started rushing around and saying the cord was in the way, Dr. Solomon and Dr. Chambers (the OB) were saying "Come on baby move, we need a clear shot here." and the whole room got tense. The  anesthesiologist's assistant was trying to tell me a joke to get me to not listen to them but they were all I could hear. I felt like I was underwater, I knew something was wrong but I couldn't quite make out what was going on. I think it only lasted for a minute or two but it felt like a long time and then Dr. Solomon said "I'm going to need the second shunt. This one won't work." She took it out and put another needle and all the things they use to place the shunt back through my incision. At this point the Neonatal Surgeon came over to pet my head and tell me how great I was doing. She started telling me about who she operates on and that Avery was cute she saw her face on the ultrasound. I think I dosed off for a few minutes around this point and then when I woke up Dr. Solomon said she' had it placed. I guess another Doctor was going to tell my family it was looking good. They were still watching her to see how she was reacting on the screen and I guess her entire belly drained in about 5 minutes. Which they were not expecting so that was good. They said she went from looking like a pregnant person with water filled to a normal sized baby abdomen. They tried to make Avery move but I guess she was tired from the meds they gave me too. They said that was normal but they put something that vibrated on my stomach to try and shake her but she wasn't moving. They said it was okay and then started to clean up. I asked a nurse how long we'd been in there since Dr. Solomon told me before the surgery it should only take about 30 minutes tops and the nurse said it'd been an hour. I asked to see Avery and I guess they showed her to me on the screen and showed me her tummy which had no more fluid but I don't remember that much at all. I asked to have a print out of her face and they said they'd give me one.

They all put me on a board and lifted me to another bed and wheeled me to recovery. I'm not sure how long I waited or slept there. I remember the nurse handing me a copy of the picture of Avery from the Ultrasound and saying the doctor would be in soon. Dr. Solomon came in and said it went as well as it could have. That the first didn't work because her cord was in the way but once they got that figured it out it went really well and drained great. That now we just needed to hope that two things don't happen. 1. Hope she doesn't pull the shunt out of her tummy sometime and 2. That it doesn't get clogged up with calcium build up since these shunts aren't made for this purpose and that there could be too much calcium that clogs it and makes it stop working. She said if that does happen we can always do this again but we'd prefer not to. We just need this to hold out for 6 1/2 more weeks and then she can be delivered and it doesn't need to be there anymore. She told me she was going to go talk to my family and then send them in to see me. Next thing I remember is my mom, Ethan, Grandy and Opa (what I call my grandparents) were all in there and told me that I did good and it seemed like it went well.

 I showed them the picture of her face and talked a little with them but I was too groggy to remember much and I'm not sure if the talking I did was making much sense at this point. After awhile there they moved me to another bed and wheeled me into the room that I would spend the rest of my hospital stay in. I took a nap and watched some shows and was constantly be poked and prodded at by nurses and they kept giving me more medicines in my IV. They brought Ethan a cot to sleep on for the night and after dinner my mom said she was going to go home. She said if anything happened to call her and she would be there immediately. Ethan and I watched some more TV and I just rested. They checked Avery's heart rate a few times and every time it sounded good.

 We got to go home the next afternoon and I was told just to stay on bed rest and lay low. Now I am here at home still having lazy days. I'm a little sore from the procedure but Avery is moving around like normal and I'm feeling better every day. We have a follow up with Dr. Solomon on Wednesday (they said we may start seeing her more than once a week now) to see how Avery is looking. Hopefully the shunt is still doing its job and she has no excess fluid on her tummy. I may have to stay on bed rest for the rest of my pregnancy they will decide that when we see how she's looking. For right now I sort of wish I knew how to knit or crochet or something to occupy my hands and time of all the hours I'm just laying here.

 So for right now I'm pretty happy with the outcome. Hopefully we get good news on Wednesday and it's working great, then I'll be really happy. Thank you to everyone who has written to me or asked how I was doing. Also thank you to everyone who prayed this would go well and thought about us during this scary time. Please keep up your prayers that this thing works and holds for the next 6 1/2 weeks until they want to deliver her.

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. 

No Better, No Worse

I went to the doctor yesterday and we haven't had any real significant changes. I'm glad nothing has gotten worse but I was hoping for more good news but I can't really be picky now, can I?

 We still have low normal amniotic fluid but now she has some fluid in her abdomen. We think her bowel may be seeping into her stomach, but aren't sure. If your or my bowel were to burst or seep into our stomachs it would be fatal but since everything in the uterus is sterile it means that everything in her bowel was sterile and will not hurt her any worse. To quote our doctor "I wish we hadn't seen this but it isn't horrible. We need to be flexible because her condition can change and we need to be ready and prepared to change our plan after every appointment if need be." That scares me, because I'm a planner. I like to know things as far in advance as possible so I can plan for it but it doesn't seem like that is going to be very possible here. I will have a basic plan but may have to shift it up all the time.

 Her brain and heart are still doing well. She's all stretched out in me and not as squished anymore now that we have fluid surrounding her. Our doctor says the amount she moves around is great and I have no signs of preterm labor. Which is good. We were told now that she has to be at least 4 1/2 pounds probably to be able to be operated on. She cannot come prematurely or that is certain death. Our doctor is going to call our Neonatal Surgeon and ask her the smallest baby she would work on with this condition. I will be having a scheduled C Section and we're hoping that it'll be around 36 or 37 weeks. We don't want my body to go into labor because that could put too much stress on Avery so I can't go much farther than that.

 We have switched to weekly appointments now, which means weekly ultrasounds. We want to be able to monitor Avery more closely and see everything that's going on. We think too much is changing every time with seeing her bi-weekly. So every Wednesday now I should have some sort of news which I'm glad about. I hate not knowing what is going on with the precious child that I carry with me every where I go.

 We have our first meeting with our neonatologist on Monday as well. He is the man who will be in the operating room while I give birth and as soon as she's born he will take over. He will check her oxygenation, do anything she may need to keep her alive. We were told if her lungs are not developed enough we may be able to give her ECMO (Extracorporeal membrane oxygenation.) I really hope she doesn't end up needing ECMO but it's a good option if she does. Please pray that her lungs develop enough that she won't need the ECMO machine.

 ECMO is a machine that takes out all the blood in her body slowly and will pump air into it and filter it back into the body. It's basically a lung bypass machine. It's not a permanent solution at all but it may be what she needs during surgeries and recoveries to give her lungs a break and let them keep developing. While a child is on ECMO they are kept asleep most of the time so they do not move around and rip out the tubes going into the large arteries of the neck. We will not be able to hold her while she's on ECMO and it is a pretty dangerous option but if it's all we have to save our child, it's what we will do.

 Soon we will meet with our neonatal surgeon as well and make a plan with her too. After we have a plan with all 3 of those doctors they will work together to make a plan that best suits Avery and her care. The Neonatologist will only be her doctor initially, once she is stable whether that be 5 minutes or 5 hours after birth she will be taken by helicopter over to Phoenix Childrens Hospital where her Neonatal Surgeon works and she will take over from there. All while I'm left in another hospital recovering from surgery, without her. I'm very scared for this but I know it's necessary to keep her alive.

 Thank you everyone for the continued thoughts, prayers and comments. They mean so much to me. I like knowing that people are reading my blog and thinking about my precious baby and hoping for her life. I'm very conflicted with how I feel now, I'm happy that my daughter has a chance and I cling to our glimmer of hope but I'm terrified about all the "What if's" and "Maybe's" I just want to know the outcome and know that my baby is okay, but I can't know that. I have to live this with no real certainty and that's horrifying. I'll update more soon, please keep up all your thoughts and prayers for Miss Avery! Pray that her lungs are developing, Pray she will live, pray that I keep having amniotic fluid, and pray that the fluid in her stomach does not get worse.

Complicated

 A lot of the details and thoughts of this whole situation are complicated. I would say my life is more complicated now than not. Complicated medical terms, complicated diagnosis, complicated feelings, everything is complicated.

 We always hear the term "I wouldn't wish this on anyone else" or  "I wouldn't wish this on my worst enemy" and now that this is happening to me that is extremely true. I wouldn't want anyone to go through this. Since I have to go through this I wouldn't want anyone else too.

 I'm going to be honest here though, I still have very human feelings. This may make me sound like a horrible person but if I could wish this off my child and onto someone else, I would. I wouldn't let this happen to me and my baby. I would willingly give it over to someone else, and yes I would feel guilty but I don't think that guilt could compare to the sadness I feel over the upcoming death of my daughter. Since I have to go through it and can't change that I wouldn't wish it on anyone but if I could push it on to someone else, I would. Sometimes I see women with a ton of healthy kids and think "Why couldn't this be you? You have so many healthy perfect kids..." After a lot of these thoughts I start to feel like a horrible person but I think anyone would feel that way deep down. Or maybe not and I actually am a horrible person but I swore to be honest on this blog and to get out all of my honest feelings even the mean, scary, complicated ones.

 Another complicated feeling is watching my sweet boyfriend touch my stomach and feel our daughter move and watch his face. We smile because she is moving and we love her but behind every smile are a hundred tears to go with it. Even if we aren't outright crying, we are on the inside.

 Avery loves Ethan's voice, anytime he talks she will kick, more so than for me or anyone else. She loves him. I love that she loves him and moves happily when she hears his voice but it breaks my heart at the same time that they won't have that father daughter bond much longer. He shouldn't only have two wishes for her lifetime, he should have hundreds. He told me the other day that all he wants is for her to see his face before she dies and to hold his finger. Of course he wants to kiss her and hold her and everything else but his biggest wish for her lifetime shouldn't be her holding his finger.

I mentioned in my last post that I make lists of everything in my head now. I have lists of complicated feelings too or things that trigger complicated feelings, such as....

• Looking at or buying a cute outfit to dress her in
• Feeling her kick
• Knowing that her brain and heart among other things in her tiny body are perfect
• Looking at her ultrasounds 
• Showing other people her heartbeat on our doppler or letting them feel her kick
• Choosing who we will welcome to the hospital to hold her.
• Having people tell me that they love my blog
• My ever-growing tummy

That's just a few of my very long, never ending list of complicated feelings. 

I'm feeling very numb lately. I'm still sad, dont get me wrong but I feel less inclined to cry than I have been. I still cry and am heartbroken but it's just so hard and its hard not to feel this empty numb feeling towards everything and everyone. 

I love her so much, I just want to know why this is happening... Why her? Why me? Why anyone?