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.

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.

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. 

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.