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.
Showing posts with label angry. Show all posts
Showing posts with label angry. Show all posts
Wednesday, September 24, 2014
Thursday, September 11, 2014
No Better, No Worse
I went to the doctor yesterday and we haven't had any real significant changes. I'm glad nothing has gotten worse but I was hoping for more good news but I can't really be picky now, can I?
We still have low normal amniotic fluid but now she has some fluid in her abdomen. We think her bowel may be seeping into her stomach, but aren't sure. If your or my bowel were to burst or seep into our stomachs it would be fatal but since everything in the uterus is sterile it means that everything in her bowel was sterile and will not hurt her any worse. To quote our doctor "I wish we hadn't seen this but it isn't horrible. We need to be flexible because her condition can change and we need to be ready and prepared to change our plan after every appointment if need be." That scares me, because I'm a planner. I like to know things as far in advance as possible so I can plan for it but it doesn't seem like that is going to be very possible here. I will have a basic plan but may have to shift it up all the time.
Her brain and heart are still doing well. She's all stretched out in me and not as squished anymore now that we have fluid surrounding her. Our doctor says the amount she moves around is great and I have no signs of preterm labor. Which is good. We were told now that she has to be at least 4 1/2 pounds probably to be able to be operated on. She cannot come prematurely or that is certain death. Our doctor is going to call our Neonatal Surgeon and ask her the smallest baby she would work on with this condition. I will be having a scheduled C Section and we're hoping that it'll be around 36 or 37 weeks. We don't want my body to go into labor because that could put too much stress on Avery so I can't go much farther than that.
We have switched to weekly appointments now, which means weekly ultrasounds. We want to be able to monitor Avery more closely and see everything that's going on. We think too much is changing every time with seeing her bi-weekly. So every Wednesday now I should have some sort of news which I'm glad about. I hate not knowing what is going on with the precious child that I carry with me every where I go.
We have our first meeting with our neonatologist on Monday as well. He is the man who will be in the operating room while I give birth and as soon as she's born he will take over. He will check her oxygenation, do anything she may need to keep her alive. We were told if her lungs are not developed enough we may be able to give her ECMO (Extracorporeal membrane oxygenation.) I really hope she doesn't end up needing ECMO but it's a good option if she does. Please pray that her lungs develop enough that she won't need the ECMO machine.
ECMO is a machine that takes out all the blood in her body slowly and will pump air into it and filter it back into the body. It's basically a lung bypass machine. It's not a permanent solution at all but it may be what she needs during surgeries and recoveries to give her lungs a break and let them keep developing. While a child is on ECMO they are kept asleep most of the time so they do not move around and rip out the tubes going into the large arteries of the neck. We will not be able to hold her while she's on ECMO and it is a pretty dangerous option but if it's all we have to save our child, it's what we will do.
Soon we will meet with our neonatal surgeon as well and make a plan with her too. After we have a plan with all 3 of those doctors they will work together to make a plan that best suits Avery and her care. The Neonatologist will only be her doctor initially, once she is stable whether that be 5 minutes or 5 hours after birth she will be taken by helicopter over to Phoenix Childrens Hospital where her Neonatal Surgeon works and she will take over from there. All while I'm left in another hospital recovering from surgery, without her. I'm very scared for this but I know it's necessary to keep her alive.
Thank you everyone for the continued thoughts, prayers and comments. They mean so much to me. I like knowing that people are reading my blog and thinking about my precious baby and hoping for her life. I'm very conflicted with how I feel now, I'm happy that my daughter has a chance and I cling to our glimmer of hope but I'm terrified about all the "What if's" and "Maybe's" I just want to know the outcome and know that my baby is okay, but I can't know that. I have to live this with no real certainty and that's horrifying. I'll update more soon, please keep up all your thoughts and prayers for Miss Avery! Pray that her lungs are developing, Pray she will live, pray that I keep having amniotic fluid, and pray that the fluid in her stomach does not get worse.
We still have low normal amniotic fluid but now she has some fluid in her abdomen. We think her bowel may be seeping into her stomach, but aren't sure. If your or my bowel were to burst or seep into our stomachs it would be fatal but since everything in the uterus is sterile it means that everything in her bowel was sterile and will not hurt her any worse. To quote our doctor "I wish we hadn't seen this but it isn't horrible. We need to be flexible because her condition can change and we need to be ready and prepared to change our plan after every appointment if need be." That scares me, because I'm a planner. I like to know things as far in advance as possible so I can plan for it but it doesn't seem like that is going to be very possible here. I will have a basic plan but may have to shift it up all the time.
Her brain and heart are still doing well. She's all stretched out in me and not as squished anymore now that we have fluid surrounding her. Our doctor says the amount she moves around is great and I have no signs of preterm labor. Which is good. We were told now that she has to be at least 4 1/2 pounds probably to be able to be operated on. She cannot come prematurely or that is certain death. Our doctor is going to call our Neonatal Surgeon and ask her the smallest baby she would work on with this condition. I will be having a scheduled C Section and we're hoping that it'll be around 36 or 37 weeks. We don't want my body to go into labor because that could put too much stress on Avery so I can't go much farther than that.
We have switched to weekly appointments now, which means weekly ultrasounds. We want to be able to monitor Avery more closely and see everything that's going on. We think too much is changing every time with seeing her bi-weekly. So every Wednesday now I should have some sort of news which I'm glad about. I hate not knowing what is going on with the precious child that I carry with me every where I go.
We have our first meeting with our neonatologist on Monday as well. He is the man who will be in the operating room while I give birth and as soon as she's born he will take over. He will check her oxygenation, do anything she may need to keep her alive. We were told if her lungs are not developed enough we may be able to give her ECMO (Extracorporeal membrane oxygenation.) I really hope she doesn't end up needing ECMO but it's a good option if she does. Please pray that her lungs develop enough that she won't need the ECMO machine.
ECMO is a machine that takes out all the blood in her body slowly and will pump air into it and filter it back into the body. It's basically a lung bypass machine. It's not a permanent solution at all but it may be what she needs during surgeries and recoveries to give her lungs a break and let them keep developing. While a child is on ECMO they are kept asleep most of the time so they do not move around and rip out the tubes going into the large arteries of the neck. We will not be able to hold her while she's on ECMO and it is a pretty dangerous option but if it's all we have to save our child, it's what we will do.
Soon we will meet with our neonatal surgeon as well and make a plan with her too. After we have a plan with all 3 of those doctors they will work together to make a plan that best suits Avery and her care. The Neonatologist will only be her doctor initially, once she is stable whether that be 5 minutes or 5 hours after birth she will be taken by helicopter over to Phoenix Childrens Hospital where her Neonatal Surgeon works and she will take over from there. All while I'm left in another hospital recovering from surgery, without her. I'm very scared for this but I know it's necessary to keep her alive.
Thank you everyone for the continued thoughts, prayers and comments. They mean so much to me. I like knowing that people are reading my blog and thinking about my precious baby and hoping for her life. I'm very conflicted with how I feel now, I'm happy that my daughter has a chance and I cling to our glimmer of hope but I'm terrified about all the "What if's" and "Maybe's" I just want to know the outcome and know that my baby is okay, but I can't know that. I have to live this with no real certainty and that's horrifying. I'll update more soon, please keep up all your thoughts and prayers for Miss Avery! Pray that her lungs are developing, Pray she will live, pray that I keep having amniotic fluid, and pray that the fluid in her stomach does not get worse.
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?
Subscribe to:
Posts (Atom)