Even though I'm smiling...

As you know, we experienced the death of our sweet baby girl, Avery only 20 short days ago. This is an extremely difficult situation because no one ever expects a child to die and even after we were told it could happen still had hope and believed our baby would pull through. After the initial loss, most people do not know how to interact with the grieving parents, which is understandable. Ethan and I attended a bereavement support group. I've been going to this group since my miscarriage about two years ago but Ethan just started attending. At group before they've suggested writing a letter and providing people with tips, which may make the situation easier for them and for us. So instead of a letter, I thought I'd write out a blog post. I'm kind of coping the template of the letter they gave out at the support group and another letter that was written by a friend of mine who also attends group. I'll be adding things of my own in this though.

It has been almost 3 weeks since Avery died. Some people may think we are recovering well or will be over it soon. However, there is no time limit on this journey of grief but their are some tips on things you can do to help us or if you don't personally know us but read my blog maybe you'll be able to use this with someone in your life you know who has lost a baby. I've noticed most moms and dads who've lost a baby whether at 10 weeks along in their pregnancy or had a baby that was 10 months old have similar feelings and need similar things. 

 First, if you don't already know, here is a little information about our daughter. We named her Avery Faith. We used the middle name Faith because we knew we were going to need a lot of Faith throughout my pregnancy with all of our complications. We knew we would need Faith if our daughter was born and lived and needed surgeries and we sure as hell knew we'd need Faith if she was born and died. She was born on Thursday, September 25th, at 10:07 pm by C Section. She was in danger of distress and we were told that she would not make it another week if we didn't deliver her ASAP.

 We did choose to have a memorial service for our precious and gorgeous daughter. It is coming up in 10 days. Coincidentally, it falls on the exact day we were going to have our baby shower and exactly one month to the day after she was born and died. We decided to cremate her in case we ever moved from Arizona where we currently live so we wouldn't be leaving behind her headstone and resting place. We also chose this so we could have her with us, always. 

 We would like to thank EACH ONE OF YOU who has given a hug, said a prayer for us, sent flowers or a card, delivered a meal, and supported us in anyway through this tragic time. It honestly means so so much to us and really does help in our time of need. Thank you for taking the time to read this and for your continued love and support. Thank you for reading any of my posts. I'm not the best writer but it is incredibly therapeutic for me and I think it also helps people understand where I'm coming from and what I'm feeling. 

TIPS:

• Saying "I'm sorry for your loss" at any time after a baby has died is never inappropriate or too late. In fact we appreciate it and are grateful that you all remember, because we NEVER forget
• Understanding that the amount of time a child lives does not determine its value or the impact that the child has made on the parents' lives. To ignore what has happened in hopes the the grief will pass, is to diminish the worth of a child that was loved even before its birth. (We had plans and dreams for this child. We prayed for Avery's health everyday as soon as we found out I was pregnant and even more so after we found out things were wrong. She is OUR daughter. Some people think, and have said, how it would be harder if we actually had KNOWN her. Well we did KNOW her. She is our daughter. We only got 86 minutes with her alive but we still KNEW her. Sometimes it hurts more that we didn't know if she would like the color pink or the movie Frozen. What her favorite food or music would be or what her sweet voice would sound like. It isn't easier because we didn't "know" her.)
• If you are uncomfortable about discussing the death of our baby with us because you think we won't want to talk about it, don't shy away. Also don't be afraid to bring it up because you think you're reminding us of the pain. We never forget, she is never not on our minds. Simply say something like, "I just want you to know that I'm here to listen if you need to talk." If we don't want to talk at that time don't assume that we never want to talk. Check back in or take the initiative to get together for lunch or something else. It may be difficult for you hear some of the details of her death, but it is worse for us to experience it and have to keep it to ourselves. (I would also like to add that you don't need to say anything like this if YOU don't want to talk about it. Ask only if you are sincere and are really ready to listen and care. Don't ask our of mere curiosity - ask because you truly care and want to listen. I, myself love talking about Avery and am an open book about what happened. It just hurts when people aren't sincere and just want to know because they're curious.) We may not know what to say to you sometimes, so don't be afraid to ask us questions about Avery's pregnancy, birth or death. Sometimes that makes it easier for us to talk to you when we know what to say. 
• Realize that Avery is still the product of our love and the joy of our lives. There is joy and pain. The joy didn't end when Avery died and our pain won't end as soon has the service is over and the cards are sent. Accept both. We need to feel the pain (we want to feel the pain), hard as it is when I'm sad and crying, but it is OK and healthy to mourn Avery. I'm allowed to be mad because this sucks and things like this aren't supposed to happen.)
• Our daughter has a name, use it. Try to remember the parents with a note or phone call on the first Mothers and Fathers Day, as well as the baby's predicted Due date and the anniversary of the child's birth and death. (I am already dreading Christmas because of my Christmas Eve due date. I'll just be honest with you about that. Currently, my  heart still breaks every Wednesday when I would have added another week on to my pregnancy. I would have been 30 weeks along today. Or every Thursday as I re-live all the events of the Thursday she was born, all day, from my doctor appointment at noon, to getting my Spinal before my C Section at 9:30 pm, to the time she was born at 10:07 pm, to the time they called time of death at 11:33 pm. It is still hard and it will continue to be hard for a very long time. I still think about it and you talking about it with me won't bring up more of these feelings because they are already there. It is nice when anyone remembers.)
• Please make an effort to not underestimate the DEPTH of the pain, the strength of the grief, and most importantly, the difference your support and involvement can make during this painful adjustment. There may not be any other time when you're needed in our lives more than now. If you distance yourself until you think a reasonable amount of time has passed, because you're uncomfortable, you may find a different kind of distance and hurt between yourself and the grieving parents. We will never be the same people ever again, Avery changed us and the death of Avery changed us. We're adjusting to our new normal in our lives and if you leave because you think it'll be better for us, when you come back we probably won't be the same people you remember. If you share in the experience everyone will come our stronger. Many of you have already done so much and we are thankful from the bottom of our hearts for your love, support, and kindness. 

These are the the tips listed in the letter we got from our support group. I thought they were helpful and could maybe help some of you understand a little bit more of what we are feeling. 

 We miss our daughter every second of every day. Some days are much harder than others. We survive moment by moment. We can and do smile and we can see the blessing in our lives. We are still functional people but that doesn't mean we aren't hurting or struggling still. This is normal and OK! Please don't say anything to make us feel badly or not normal for feeling this way. We try to smile when we walk by you, but just because we smile doesn't mean there isn't pain behind it all. If I'm not crying that doesn't mean I'm not heartbroken. I don't like it when people say to me "You seem to be doing so well!" because I'm not doing well. I couldn't possibly be doing well, my child died. I'm numb and broken and going through the motions of my day and doing what needs to be done. I enjoy seeing my friends and family still and not just laying around in bed all day sobbing but that doesn't mean I'm not hurting. Somedays I do just want to lay in bed and sob and not talk to anyone but that can't be my everyday. If you see us and we're smiling or not talking about Avery don't assume we aren't sad or that we're over it or "doing well" because this isn't the case. 

 Thanks for loving us and reading this. If you have any thoughts or questions please don't hesitate to ask us. If you lost a loved one or a child and you would like to add any tips PLEASE DO and please feel free to write your own letter and use my post as a template and share it with your friends and family so they can help you!

 I do know we will be with our daughter again someday but that doesn't mean I like hearing that this was all in "Gods Will" because I personally don't think babies and children dying are in Gods will. I think he knows it will happen and allows to to happen but I don't think he makes it happen. I know the Lord has watched over us through all of this and there have been MANY miracles and blessing. I am thankful for them all. I'm thankful for every second I got with my beautiful daughter. But it doesn't mean I don't miss my baby girl and I know that's okay. I'm thankful that Ethan and I are in love and stronger throughout all this. I'm thankful that death isn't the end and that I will hold my baby again and be able to kiss her. I cannot wait to kiss my Avery again someday. I'm eternally grateful that she joined our family and it is precious to me to know that we have our own little guardian angel watching over us. She is forever in our hearts and is forever part of our family and lives. We never want to hide her or forget her presence.

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.