**disclaimer: this picture of Ellie was NOT on an official 3d or 4d scan, it's a low quality image based on estimations, and she was super wiggly which distorts things a little bit..so try not to read too far into any one aspect of the photo. We think that she is just lovely.
This post is going to be slightly frustrating because once again, we left with a lot of "I don't knows." But we kind of expected that. We feel okay, and I think that is because we got the worst news a couple months ago at the start of all of this--and even that news ended up being wrong, so in a sense we still feel like we can't be shaken too hard in these subsequent appointments. Ellie has been given more than one death sentence by doctors and they are pretty surprised she's still alive, so that's a victory in our book.
So straight to the point:
You can see in this photo a little of what they are talking about with her hands being turned in a bit. She has all of her fingers and her hands are normal developmentally, but her wrists are kind of stuck in that flexed down position. I realize that sounds sorta like, "K-big deal, she's probably just laying like that," but there is more to it than that and it's hard to go into detail on here. This is one of the big reasons (along with her lack of growth) as to why they thought she had Trisomy 18, but that's out due to the amniocentesis, so we were back to square one.
They are throwing around possible syndromes like arthyrogryposis multiplex congenita, or AMC, but even that is just a speculation and they really have no idea. Even an AMC diagnosis has such a WIDE spectrum of severity that it wouldn't do much good to diagnose her anyway, even if they were sure. You can research it if you'd like--but it just varies SO much depending on the case.
They are a little bit concerned with her jaw/chin still, but they can't really pinpoint what may be wrong, other than something developmental just like everything else.
They are also a little bit concerned with some potential swelling in her head, but also not compelling enough to be able to say it is or isn't anything at all.
See how this is frustrating?
Regardless--according to "the text book," they obviously would love to induce me....mainly because they are specialists and they much prefer to have babies in controlled environments rather than in the womb where they can do nothing. BUT for one, she's still growing in there, and two, her chances of survival at this moment in time are better in the womb. Also-just to throw this out there, we feel pretty strongly that we will not choose to induce unless there is an absolutely compelling reason to do so (i.e. she completely stops growing, stops moving, they find some sort of crazy abnormality, etc.)
The plan so far is that we are going to keep her in the womb as long as possible and hopefully go into labor naturally when it's time. We feel very strongly about this and have conveyed it to the doctors. If they ever believe we are making a decision that is NOT in the best interest of Ellie--they will tell us.
As far as appointments go-they are still emotionally exhausting, but we're staying strong and our next one will be in 3 weeks unless I feel any major changes (her movement stops, by blood pressure changes dramatically, contractions, etc.) By then I will be 34 weeks and then in another 3 I'll be considered full term.
Some people have asked us why we wouldn't choose to go more frequently--and we spoke with the doctors about it. There are absolutely no interventions we could be doing right now to change things, besides inducing labor. Because this is the case, we have all agreed that it will be easier emotionally to keep them a little bit spaced out until the very last few weeks (again--unless something drastic changes.)
We are very proud of her for just being alive. I can't lie and say that the doctors' prognosis is good--they still believe that she is not going to make it. We just want to keep everyone on the same page so we can all know how to pray.
However, I'll be the first to say that they also believed she had Trisomy 18 and that she wouldn't be alive right now. SO--we're going to keep praying and we are remembering that nothing is uncertain in the kingdom. God has gone before us and he knows better than any doctor what is to come.
We seriously seriously seriously wish we could personally call every person who asks about her. We really really do. Thank you so much for caring about our family. Again, we'll just keep praying until the next appointment.
Love,
C+J
---EDIT---
I forgot to add this yesterday to the details but I've been getting a lot of questions about it which kept reminding me to add it on-
A lot of people are wondering if she's just a tiny baby. The doctor's would be okay with calling her that if her growth was consistently behind, but here is the problem:
When this first began she was 4 weeks behind, and then the next time we went in she was 6 weeks behind. The next time she was 8 weeks behind and now she is currently 10 weeks behind. Their worry is that she's clearly exponentially slowing in growth the further that I get...anyways, so that's all I have on that. Praying for many many growth spurts.
This post is going to be slightly frustrating because once again, we left with a lot of "I don't knows." But we kind of expected that. We feel okay, and I think that is because we got the worst news a couple months ago at the start of all of this--and even that news ended up being wrong, so in a sense we still feel like we can't be shaken too hard in these subsequent appointments. Ellie has been given more than one death sentence by doctors and they are pretty surprised she's still alive, so that's a victory in our book.
So straight to the point:
You can see in this photo a little of what they are talking about with her hands being turned in a bit. She has all of her fingers and her hands are normal developmentally, but her wrists are kind of stuck in that flexed down position. I realize that sounds sorta like, "K-big deal, she's probably just laying like that," but there is more to it than that and it's hard to go into detail on here. This is one of the big reasons (along with her lack of growth) as to why they thought she had Trisomy 18, but that's out due to the amniocentesis, so we were back to square one.
They are throwing around possible syndromes like arthyrogryposis multiplex congenita, or AMC, but even that is just a speculation and they really have no idea. Even an AMC diagnosis has such a WIDE spectrum of severity that it wouldn't do much good to diagnose her anyway, even if they were sure. You can research it if you'd like--but it just varies SO much depending on the case.
They are a little bit concerned with her jaw/chin still, but they can't really pinpoint what may be wrong, other than something developmental just like everything else.
They are also a little bit concerned with some potential swelling in her head, but also not compelling enough to be able to say it is or isn't anything at all.
See how this is frustrating?
Regardless--according to "the text book," they obviously would love to induce me....mainly because they are specialists and they much prefer to have babies in controlled environments rather than in the womb where they can do nothing. BUT for one, she's still growing in there, and two, her chances of survival at this moment in time are better in the womb. Also-just to throw this out there, we feel pretty strongly that we will not choose to induce unless there is an absolutely compelling reason to do so (i.e. she completely stops growing, stops moving, they find some sort of crazy abnormality, etc.)
The plan so far is that we are going to keep her in the womb as long as possible and hopefully go into labor naturally when it's time. We feel very strongly about this and have conveyed it to the doctors. If they ever believe we are making a decision that is NOT in the best interest of Ellie--they will tell us.
As far as appointments go-they are still emotionally exhausting, but we're staying strong and our next one will be in 3 weeks unless I feel any major changes (her movement stops, by blood pressure changes dramatically, contractions, etc.) By then I will be 34 weeks and then in another 3 I'll be considered full term.
Some people have asked us why we wouldn't choose to go more frequently--and we spoke with the doctors about it. There are absolutely no interventions we could be doing right now to change things, besides inducing labor. Because this is the case, we have all agreed that it will be easier emotionally to keep them a little bit spaced out until the very last few weeks (again--unless something drastic changes.)
We are very proud of her for just being alive. I can't lie and say that the doctors' prognosis is good--they still believe that she is not going to make it. We just want to keep everyone on the same page so we can all know how to pray.
However, I'll be the first to say that they also believed she had Trisomy 18 and that she wouldn't be alive right now. SO--we're going to keep praying and we are remembering that nothing is uncertain in the kingdom. God has gone before us and he knows better than any doctor what is to come.
We seriously seriously seriously wish we could personally call every person who asks about her. We really really do. Thank you so much for caring about our family. Again, we'll just keep praying until the next appointment.
Love,
C+J
---EDIT---
I forgot to add this yesterday to the details but I've been getting a lot of questions about it which kept reminding me to add it on-
A lot of people are wondering if she's just a tiny baby. The doctor's would be okay with calling her that if her growth was consistently behind, but here is the problem:
When this first began she was 4 weeks behind, and then the next time we went in she was 6 weeks behind. The next time she was 8 weeks behind and now she is currently 10 weeks behind. Their worry is that she's clearly exponentially slowing in growth the further that I get...anyways, so that's all I have on that. Praying for many many growth spurts.
