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

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.

Starter Post

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

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

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

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

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

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

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

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

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

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

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

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