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.
*This post is a long one, just a quick little warning.
It has taken me a few days to be able to sit down and write about all that has happened in the past week. It has been a whirl wind of good news, bad news, stress, emotions, exhaution, fear, and so many other things. Monday and Tuesday I had appointments with my OB and Maternal Fetal Dr's here in NC. Both of those appointments went well, didn't really learn anything new. What we were mostly waiting for was approval from the insurance company to approve our trip to Philadelphia to be seen by some of the best Doctors in the nation. We had started the process about two weeks prior and had anticipated knowing the insurance companies decision with enough time to buy plane tickets and prepare, but of course, our ways are not God's ways and I need to stop trying to plan because obviously my plans have not worked out thus far.
My appointments were scheduled for Thursday and Friday and it was already Wednesday and we hadn't gotten the ok. We had pretty much figured that we would have to switch the dates all around and plan for a later appointment. Well, at about 12:30pm my phone rang, and we had the ok. We needed to pack and travel 9 hours up the coast to Philadelphia and make it there by 7:30am the next day for my first appointment. We had originally planned on flying but since we had such short notice we ended up having to drive.
The drive from Mooresville, NC to Philadelphia PA was supposed to take a little over 8 hours. But it ended up taking us about 11. Between having to stop so many times so I could either use the bathroom or stretch, or to switch drivers because we literally drove through the night, it was exhausting to say the least. And let me tell you when you have that many hours to "try" and fall asleep in the car your mind wanders. And it wanders to those places that you don't want to go. I was literally terrified. Terrified of the MRI (I had a bad experience like 8 years ago), terrified of them finding something wrong, terrified of them not be able to be separated, and just terrified at the whole experience. And the more I thought, the more scared I got.
Finally at 5am we got to our hotel in Camden, NJ which is right across the river from Philadelphia. Now being that is was 5am we only had about an hour/hour and half to try and get some sleep in before we had to be up and at the hospital. My poor husband Riley hadn't slept at all on the ride and had driven the last few hours of it, so falling asleep was really hard for him and he literally got no sleep. But when the alarm went off at 6:15 we got up and got ready to head to the hospital.
We got to the hospital at 7:30, got everything filled out and I was literally headed to my MRI by 8am. Now when you hear MRI you think, "eh, no big deal, you lay still for a little bit in a tube and boom your done". Welllllll when you are pregnant with conjoined twins and it is a fetal MRI that isn't quite the case. Yes you lay on a table, and yes they put you into a tube. What most people don't realize is that a baby doesn't know how to stay still. So to do an MRI on one baby who is very cooperative takes about 45min. Now for a pregnant mama, laying on your back that long isn't the most comfortable thing in the world, especially when your baby hates the MRI and is kicking you harder than you've every experienced. But lets take all this and multiply it by two, and have very active babies who are not willing to cooperate. My MRI took over 2 hours. 2 hours of having to lay still in a tiny tube that gives you hot flashes and makes you feel nauseous. 2 hours of praying that you fall asleep since you were up most the night driving in a really uncomfortable car. 2 hours of every time the machine started to make noise, feeling your babies freak out inside you. It was incredibly exhausting. I honestly didn't know if I was going to make it through it. I didn't know what it was about it, but it was something I pray that I don't have to do again. I have not prayed that long and hard in a while. I knew i needed to make it through so that the doctors would have a better view of the girls and be able to decide whether or not separation would be possible.
After the MRI we met with a geneticist who went through our family tree and looking at any possibilities of any genetic abnormalities that could arise in either this pregnancy or any future pregnancies and believe it or not we have some pretty clean genetics which was nice to hear. We then met with our coordinator. Our coordinator is a fantastic women who helps schedule our visits and plans out the day we have at the hospital. And thankfully that was the end of the first day. But she was so positive and encouraging and helpful. I am so grateful that she was the women they chose to be our coordinator.
Thankfully we were able to go back to our hotel and just rest for the rest of Thursday, and get to bed early and have a good night sleep because Friday we had to be at the hospital at 7am this time. By 7:15 they had me in my first ultrasound ready to go. That ultrasound lasted about 3.5 hours, but it didn't really feel that long because I enjoyed being able to watch them for that long. And then directly after that we had a fetal echo which is basically another ultrasound but just to check their hearts and that lasted a little over an hour. So finally by 12:45 we were ready to go get something for lunch and then we would meet with a doctor, surgeon, and our coordinator to find out the results of the tests.
By about 1:30 they were ready to meet with us. They set us up in a conference room and showed us some of the MRI pictures they took and then proceeded to tell us news that will change the course of the next year or so of our lives.
We met with two wonderful people (besides our coordinator). We met with a pediatric neuro surgeon, and a Maternal Fetal Medicine Specialist. Both are fantastic people who made me feel so at home. I have never felt so taken care of by doctors before. The Children's Hospital of Philadelphia really is a fantastic place, all the way from the receptionists, up to the surgeons, everyone has a reason as to why they wanted to work there and they want to make you feel as comfortable as possible. I really couldn't have imagined it any better.
The doctor was the one who started the conversation. She was seriously fantastic. She spoke right to Riley and I and was very soft spoken and understanding. She has personally delivered 4 sets of conjoined twins over her career at CHOP and that in it self made me feel much for comfortable. She described the way that Abby and Erin are conjoined. They are conjoined at the head almost right above the ear, but more towards their foreheads. One of them is looking more forward and the other is more looking in a downward way, almost at her sisters nose or shoulder. They seem to overall be healthy and growing well, but unfortunately it is still early and certain things haven't developed enough to tell if there is a problem or not. So we need to keep praying that nothing else develops, because it is common for conjoined twins to have other abnormalities.
She then went on to tell us that our girls have a significant amount of cord entanglement. Now this is a risk with any set of identical Monochorionic-Monoamniotic "MoMo" twins. Those two large words mean that the twins share the same placenta and they share the same amniotic sac. Meaning they can literally touch and hug each other while they are in the womb. Because of them being in the same sac they have have different things happen with their umbilical cords. They can either get tangled in the cords themselves, or their cords can get tangled and knotted. Well in my girls' case their cords have become tangled because of how much they like to flip. This is potentially very very dangerous. Think of the umbilical cord like a garden hose that has water running through it. and it starts getting tangled up. Eventually it will kink up and the water will not be able to run through it any more. The same thing happens with the cords except instead of water running through them it is blood, their life source. If they tangle their cords up enough they will constrict the blood flow and could potentially die before they are even born. Which is very scary for us because there is nothing anyone can do for it. It is up to my silly very active little girls to either try and untangle themselves a bit, or at least stop tangling themselves. The thought of loosing the babies that I can now feel kicking me and that I have seen little 3D images of their little faces just breaks me. I want to meet them and be able to kiss their little cheeks. And knowing that that may not happen is really really hard to grasp. I have to pay attention to their movements and their schedule and if anything changes I have to go up to Philly immediately. Also because of this, the Dr wants to see me every two weeks which means a lot of traveling for the three of us. She wants to be able to keep a close eye on them to see how their situation is progressing. So please please please pray they make it through this. I know God has a plan, I'm just praying that he keeps these little girls going long enough for them to be born.
After all that was explained we heard from the surgeon. He also is a fantastic human being who understands more than most what we are going through. I don't want to explain to protect him and his families privacy but just know they know what it is like to be almost exactly in our shoes. But he explained that the girls each do have their own brains. The main concern in separation will be the fact that they share something called the superior sagittal sinus vein. This is a vein that runs down the middle of your brain. It is kinda like a drainage system, you have lots of little veins going into this larger one, and this larger one transports that blood to the back of your head to your spine and eventually down to your heart. It controls about 20% of the blood flow in your brain. Now the hard part isn't necessarily separating that, they hard part is deciding who gets what. Unfortunately one baby may get a lot less than the other, and there is a chance that we could loose one. I can't remember if he gave us odds at all but having the face the fact that we may very well only go home with one baby is almost as unbearable as loosing them both. It is such a hard fact to hear and then swallow and understand. But that is quite a few months down the road before we know anything for sure, but please pray that they are only sharing a small amount and that each baby will have enough to sustain the blood flow in their brains so that they can both survive. Its very scary and I want them to have as close to a normal life as possible.
With all this being said it was just a really long weeks with a lot of ups and downs, yes, surgery is possible, but some of the odds aren't that good. Yes the babies are developing well, but their cords are entangled. It is a lot to process and then having to travel every two weeks and find someone who can go with me is difficult as well. My husband has to stay home and work because we don't even have close to the amount of money we are going to need to get through all this. And then in 2 short months I will be relocating to live in Philly full time until after everything is said and done. And that is also something that is very scary, to uproot my life and leave my family and support system and husband down here in NC which the girls and I live up north is never something I would have expected having to do, but my girls are worth it and their daddy agrees. This is what is best for them and we plan to give them the best shot we can.
We are very grateful for all the love and support that has been shown to us. Without all of you the days would be harder. Please consider going to our support tab and donating to help us with some of the travel expenses. Plane tickets are not cheap, and neither are hotels even with discounted prices. We appreciate what anyone can give and it is very humbling to have to ask. We are not these type of people, but I will do anything for my children. And just know that anything that is given is helping our girls have a future where they can be their own person and have dreams that they can aspire to fulfill. You really are making a difference in their lives!
On a side note we need to be careful about the media in this situation. We have been asked to steer clear of the media until everything is said and done. Just to try and keep our privacy and to respect our children. We would never want this to become like a circus where people just want to peek at the weird babies that are stuck together. Conjoined twins are rare and most people are a little freaked out by it and we don't want to have to deal with that. So please don't try to contact any media of any sort. You're welcome to share the blog but please let that be all. I also am going to try and not post as many pictures as well. Just to be careful.
Again we appreciate each and every one of you so much, for your kind words, your powerful prayers, your generous giving, and your uplifting encouragement. You make all the difference in the world for us!
-The girls to make it through the pregnancy
-Their cords to not tangle any more, and possibly untangle a little
-For the superior sagittal sinus vein that they share to be easily separated where each girl with be able to still live a full life.
-For the finances for Riley and I to be able to travel when needed and make these huge life changes
-For our piece of mind in the midst of waiting
-For anyone that has donated to our girls to be richly blessed 10xs over!
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!