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.
Showing posts with label Mad. Show all posts
Showing posts with label Mad. Show all posts
Saturday, October 4, 2014
Wednesday, September 24, 2014
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.
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.
Saturday, August 23, 2014
Complicated
A lot of the details and thoughts of this whole situation are complicated. I would say my life is more complicated now than not. Complicated medical terms, complicated diagnosis, complicated feelings, everything is complicated.
We always hear the term "I wouldn't wish this on anyone else" or "I wouldn't wish this on my worst enemy" and now that this is happening to me that is extremely true. I wouldn't want anyone to go through this. Since I have to go through this I wouldn't want anyone else too.
I'm going to be honest here though, I still have very human feelings. This may make me sound like a horrible person but if I could wish this off my child and onto someone else, I would. I wouldn't let this happen to me and my baby. I would willingly give it over to someone else, and yes I would feel guilty but I don't think that guilt could compare to the sadness I feel over the upcoming death of my daughter. Since I have to go through it and can't change that I wouldn't wish it on anyone but if I could push it on to someone else, I would. Sometimes I see women with a ton of healthy kids and think "Why couldn't this be you? You have so many healthy perfect kids..." After a lot of these thoughts I start to feel like a horrible person but I think anyone would feel that way deep down. Or maybe not and I actually am a horrible person but I swore to be honest on this blog and to get out all of my honest feelings even the mean, scary, complicated ones.
Another complicated feeling is watching my sweet boyfriend touch my stomach and feel our daughter move and watch his face. We smile because she is moving and we love her but behind every smile are a hundred tears to go with it. Even if we aren't outright crying, we are on the inside.
Avery loves Ethan's voice, anytime he talks she will kick, more so than for me or anyone else. She loves him. I love that she loves him and moves happily when she hears his voice but it breaks my heart at the same time that they won't have that father daughter bond much longer. He shouldn't only have two wishes for her lifetime, he should have hundreds. He told me the other day that all he wants is for her to see his face before she dies and to hold his finger. Of course he wants to kiss her and hold her and everything else but his biggest wish for her lifetime shouldn't be her holding his finger.
I mentioned in my last post that I make lists of everything in my head now. I have lists of complicated feelings too or things that trigger complicated feelings, such as....
We always hear the term "I wouldn't wish this on anyone else" or "I wouldn't wish this on my worst enemy" and now that this is happening to me that is extremely true. I wouldn't want anyone to go through this. Since I have to go through this I wouldn't want anyone else too.
I'm going to be honest here though, I still have very human feelings. This may make me sound like a horrible person but if I could wish this off my child and onto someone else, I would. I wouldn't let this happen to me and my baby. I would willingly give it over to someone else, and yes I would feel guilty but I don't think that guilt could compare to the sadness I feel over the upcoming death of my daughter. Since I have to go through it and can't change that I wouldn't wish it on anyone but if I could push it on to someone else, I would. Sometimes I see women with a ton of healthy kids and think "Why couldn't this be you? You have so many healthy perfect kids..." After a lot of these thoughts I start to feel like a horrible person but I think anyone would feel that way deep down. Or maybe not and I actually am a horrible person but I swore to be honest on this blog and to get out all of my honest feelings even the mean, scary, complicated ones.
Another complicated feeling is watching my sweet boyfriend touch my stomach and feel our daughter move and watch his face. We smile because she is moving and we love her but behind every smile are a hundred tears to go with it. Even if we aren't outright crying, we are on the inside.
Avery loves Ethan's voice, anytime he talks she will kick, more so than for me or anyone else. She loves him. I love that she loves him and moves happily when she hears his voice but it breaks my heart at the same time that they won't have that father daughter bond much longer. He shouldn't only have two wishes for her lifetime, he should have hundreds. He told me the other day that all he wants is for her to see his face before she dies and to hold his finger. Of course he wants to kiss her and hold her and everything else but his biggest wish for her lifetime shouldn't be her holding his finger.
I mentioned in my last post that I make lists of everything in my head now. I have lists of complicated feelings too or things that trigger complicated feelings, such as....
- Looking at or buying a cute outfit to dress her in
- Feeling her kick
- Knowing that her brain and heart among other things in her tiny body are perfect
- Looking at her ultrasounds
- Showing other people her heartbeat on our doppler or letting them feel her kick
- Choosing who we will welcome to the hospital to hold her.
- Having people tell me that they love my blog
- My ever-growing tummy
That's just a few of my very long, never ending list of complicated feelings.
I'm feeling very numb lately. I'm still sad, dont get me wrong but I feel less inclined to cry than I have been. I still cry and am heartbroken but it's just so hard and its hard not to feel this empty numb feeling towards everything and everyone.
I love her so much, I just want to know why this is happening... Why her? Why me? Why anyone?
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