Our Journey with Conjoined Twins
Abby & Erin
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
So as I mentioned in my last post we had a Doctors appointment on this past Friday. It was just a normal visit to my regular OB. What I wasn't expecting was how incredibly nervous I would be. As I was sitting the room with my sister waiting for the doctor I literally was almost in tears because of the nerves. I know the statistics, and I know they are not good at all. (Approximately 40 to 60 percent of conjoined twins arrive stillborn, and about 35 percent survive only one day. The overall survival rate of conjoined twins is somewhere between 5 percent and 25 percent. One of the rarest types of conjoined twins is craniopagus twins, which are joined at the cranium or head. In fact, only 2 percent of all conjoined twins are joined in this way. "University of Maryland Medical Center") I am not telling you these to make you feel bad for me by any means, I am just letting you know the odds we are up against. Needless to say as a friend told me, every appointment is a milestone. And I am realizing that more and more. So to say I was nervous was an understatement. Every time they take my blood pressure they do it twice because my heart is racing so much.
Anyways the doctor finally came in all she did was find the heart beats. She first used a doppler and found the first one almost right away. And to be honest it was one of the first times I have been able to sit and listen to one of their heartbeats for me than just a few seconds. And it sunk in that I do have two little lives growing in me. But unfortunately she had some trouble finding the second heartbeat. She wasn't the doctor I saw the first time. Because my experience was not so great with him I switched to my original first choice, and she had not done the first ultrasound, and I don't think she had seen how the babies are actually conjoined. So needless to say she wasn't sure where the other baby would be to find it's heartbeat. So she pulled in a very old ultrasound machine and pulled them up. Unfortunately I didn't really get to see them because she did it only to find the other ones heart beat which she did. So I had to almost sit up to see them and the picture was really blurry. But her comments unfortunately didn't give me any sense of hope. She told me she wants me to make sure I am prepared for the worst because they are definitely conjoined at the head and its seems like it may be more than it seemed the last time I saw them. But mind you I found out that there has never been a case of conjoined twins through their office that she can remember. So she really doesn't know anything when it comes to me. And I honestly feel a bit like a guinea pig.
I have always dreamed of what it would be to be pregnant. And this is nothing what I ever thought it would be. I thought I would go to the doctors beaming every time because I would be able to see or hear my baby. I would be told when I would find out if it was a boy or girl. I would get the normal speeches about staying healthy and eating the right things and getting enough sleep. I would be able to walk through the hospital I was going to give birth in. I would be able to shop for all the fun baby things that I so long to do. I would have an amazing baby shower where we could celebrate and be so full of joy. But here I am with the future completely unknown. The little things that are important to me aren't even mentioned and I forget to ask about them because my brain turns to mush and my heart freezes at every appointment. I want to know when I can find out if they are boys or girls, but that hasn't been mentioned once. Despite whether they make it or not, they are people right now and deserve names, and to be known as each baby by themselves and not just as the fact that they are conjoined. They are my kids and not just some medical mystery that every one wants to know about. And that is so hard for me.
My emotions are on such a roller coaster. And believe it or not I don't really talk to anyone about them, I write. This is my outlet. I can sit here are cry my eyes out as I type, but I can't sit and cry to someone. It almost hurts too much. This waiting is literally killing me. One day I feel hopeful, and then the next day I feel so much grief and despair that my children may never have an easy life, or that they may not be here long enough to know how many people already love them. Even seeing a stranger in the store with their perfect baby, or even perfect kids hurts. It hurts in the deepest parts of my heart.
I also know that it is really hard for Riley. They say the first year of marriage is the hardest, but they don't mention how it will be when during your first year of marriage you have to deal with such a heavy, hard, unknown situation. Don't get me wrong, Riley and I completely love each other and are so grateful for each other. But the everyday little things get to us a lot easier than they used to. And it's hard.
We have another doctors appointment on Monday with the Maternal Fetal Medicine Doctors in Charlotte and will hopefully find out some more information there. But just like my regular OB has never had a case of conjoined twins, my MFM doctor has only seen maybe 7 cases in his career and has never seen them conjoined at the head. So again we are that medical mystery that no one really understands. Hopefully we will be setting a time where I can go and get a fetal MRI so we can really see what is going on in there. If there is any possibility of separation, and if there is anything else going on with them that we don't see on a normal ultrasound.
On a positive note Riley and I are so grateful for all the prayers and monetary support that has been coming in. It brings me to tears seeing how many people care. If we didn't have so much support I really don't know how we would do it. Our families are amazing and so understanding. And the same with our friends. And we know that even in these hard times God is still good, and he still has a plan, and he still has a purpose. He knew about it long before I even thought about having kids. And He knows how it will all turn out. And I just need to be confident in that even if some days are really hard. And I also take comfort in the fact that his strength is made perfect in my weakness. So yes, I need to be confident, but I can also be weak because that is when His strength becomes my own. He really is Riley and my's rock. He is what we stand on everyday and how we make it through each day. And he is that for each and every person going through any sort of trial no matter how big or how small. All you need to do is have faith the size of a mustard seed, and He can do great and miraculous things.
2 Corinthians 12:9
Each time he said, "My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
"You don't have enough faith," Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible."
Again thank you so much for all the support and love. I will update after our next appointment on Monday. So please keep us in your thoughts and prayers.
-Peace and comfort in these waiting times.
-For our babies to be a miracle
-For us to find the right doctors who can give us the right care
-For appointments to finally be scheduled so we can learn more
-For Riley and I to find a car soon (still only have one car)
My name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. We are trusting that God is going to work all this out for his good!