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.
Well this past month has been a whirlwind. Lots of traveling and lots of appointments. Lots of ups and lots of downs. It seems like in life when it rains it likes to pour, am I right? Not only is this a huge thing going on in my life and my families life, my family has had many things happen in the past month that has set them back and brought everyone's stress levels up about as high as they will go. Between job losses, changing jobs, getting new jobs, little health scares, big health scares (both unrelated to my pregnancy) and the list goes on. Everyone has so much going on and it has just been on of those months.
As I have said before I have been traveling every other week to visit the Doctors at CHOP for different appointments. I have met with lots of doctors, social workers, psychologists, midwives, surgeons, and the list goes on. Each person we have met has been exceptional. They make me feel almost normal. Like I am a normal expectant mother expecting two exciting little bundles. And that is a huge deal for me. To feel like this is normal. This is my first pregnancy and to have so many crazy complications is such a huge, crazy, amount of stress for me. So to have a place that makes me feel like I'm doing a good job is wonderful. Each day is scary. Every time I am not feeling them, I worry. Every little thing that hurts or feels funny make me nervous. And each time they calm my fears and let me know that they are there for me.
This past appointment was a little different than the rest of them unfortunately. Not in the way of how they made me feel, but what they found. After the ultrasound I meet with a Doctor just to go over how everything is going, along with a midwife who does all my prenatal updates and such. When she came in she began to talk about the babies cords again. Abby is having a few issues going on with hers that weren't really an issue before but unfortunately it has gotten a little worse every time that they have scanned. She has what they call, absent blood flow during diastole. Fetal.com explains it much better than I can, it says This is when blood flow is absent during diastole. Fetuses with this type of finding should be monitored closely in a hospital setting. The following ultrasound picture illustrates this type of Doppler waveform.This illustrates absent diastolic flow during diastole. When this occurs there is abnormal resistance in the placenta which results in a marked decrease in blood flow from the fetus to the placenta. Now mind you this isn't happening all the time, hence the not being monitored closely in a hospital setting. But it is enough that they decided they are not comfortable waiting two weeks to see me again. When they do this scan during the ultrasound there are periods of normal diastolic flow and periods of absent diastolic flow. They told me that if this becomes any worse meaning it becomes reverse diastolic flow which is...."When the resistance in the placenta increases further, absent diastolic flow becomes reverse diastolic flow in which the Doppler waveform is observed to be below the baseline. When the fetus develops this type of abnormality, intense surveillance is required if the fetus is less than 32 to 34 weeks and delivery if it is greater than 32 to 34 weeks. (Although this is a little different with twins) The following illustrates reverse diastolic flow during diastole (blue circle). When this occurs there is abnormal resistance in the placenta which results in a marked decrease in blood flow from the fetus to the placenta." If this ends up happening they will deliver me immediately because whatever happens to one of my babies effects the other one. So if one were to not make it because of the blood flow issue than the other one would not make it as well. So it is scary.
They want me to contact them if there is any change in the girls movements. Which that is tough for me because of all the traveling and different things going on my schedule is crazy. So I don't notice if they are more active in the morning or the evening or not because I sleep till different times everyday and eat at different times every day. So if I am not feeling them I get very nervous and it is just a tough thing. I just keep telling myself we just need to make it to Friday and see how they are doing then. And we can do that. They just need to stop making their mama worry so much (lol).
They are talking about delivering me as early as this coming Friday if necessary and that to me is terrifying. I haven't been in the delivery mind set as of yet. I haven't even met with the anesthesiologist yet to discuss anything. So the thought of an emergency C-section is just scary to me, especially since I have never done any of this before, and because there is a possibility of my have a classical c-section which is a little different and a little harder to heal from.
Now not only is the delivery part scary, but the thought of my babies who are just about 27 weeks gestation delivered and living in the world is so scary. To me that seems like they are only half baked, which is basically true. I know that twins a lot of times will come early, but even so it is just scary to not only have conjoined twins, but premature conjoined twins. I just want their odds to be as good as they can be, and I know God has a plan in all of this and that his ways are greater than ours, it's just really hard to see what that plan is when everything is going so crazy in the process.
Ok, so delivering early and being seen every week, that was news, and then found out that I had to move up my relocate date to this week. So believe it or not I am relocating on Wednesday. Now I know that isn't far off of my July 6th date that they had planned. But there was so much I was planning on doing that I am not going to be able to do now. My husband took off of work on the 4th so that would could spend the holiday together and have a full last day together doing some fun stuff, but now that isn't happening. And trust me there really not any part of me that is looking forward to not being able to live with him for and unknown amount of time. I was planning on organizing my house and cleaning and packing some things since when I come back we will be in a new house since our little one bedroom trailer will not be suitable for twins with special needs.
So it's been a huge whirlwind. Things have changed in so many ways and things have been moved up and nerves have been rattled and our lives are changing but our God is one who is never changing and He is always there and that is what needs to be held on to at times like these. I am just trusting him that his will is better than mine and He knew that all this was going to happen before I even had any thought of it.
-Abby's blood flow to normalize or at least not get worse
-Smooth easy delivery if necessary
-Nerves to be calmed about relocating
-To get into the Ronald McDonald house quickly (I am on a waiting list)
-For Riley in the midst of all this transition as he is becoming a dad and everything is new as well
Again we so appreciate each and every one of you. Your donations have helped tremendously with our travel expenses. And are still helping since we are having to rent cars and fly Riley back and forth. Your prayers and encouragement have been one of the things that keep us going. Thank you so much for all the kind words and for following the story of our precious girls and they journey.
Life is a little hectic these days, trying to prepare what we can for the months ahead. Things in my life have changed quite a bit since the last time I wrote on here. I am officially 23 weeks pregnant and feeling huge. Daddy finally felt the girls move for the first time :) and I am feeling them move every day!
First of all, getting the amount of information like we did takes quite a while to process let me tell you. There are still things that I am dealing with on a daily basis. One of those being these babies and their umbilical cords. We went back to The Children's Hospital of Philadelphia (CHOP) this past Friday for another ultrasound to keep track of what their cords seem to be doing. Now mind you if you remember the last time we were there, their cords were in a knotted mess (they showed me on an MRI picture they had) and it looked pretty bad. That was very scary. So the two weeks between visits were long. I would wonder everyday if they were still ok. Some days I would feel them kicking and other days I would feel almost nothing, and those days were never fun. So I just had to put it into God's hands and trust that his will is good and perfect and that what he wanted was going to be done. There was nothing I could do and nothing Riley could do but wait for our next ultrasound. Well this past Friday we went in and by nothing short of a miracle they have untangled their cords. The doctors told us that that was going to be an unlikely scenario, but by the grace of God and all your prayers they untangled. To get good news is such a blessing in times like these when you just feel like everything seems to be piling up. Now don't get me wrong the girls aren't "out of the woods" yet. They can re-tangle and untangle their cords over and over we just need to keep praying that it doesn't affect them or their blood supply.
The other major thing that Riley and I have been dealing with is the impending relocation I will have to go through. I am not worried about moving to Philly. I went to college close to there and I have a lot of friends and family who live within a few hours of there. What I am worried about is having to leave my husband. He is my absolute best friend and supporter. He has been a rock for me throughout this entire thing, and to know that he isn't able to come with me scares me so much. I know he will be able to visit when he can, but he needs to stay here in NC with his job to create a life for our very special family. We don't want to live in the North permanently (been there and done that, we both grew up in NY) so for him to move with me doesn't seem to make much sense. We aren't sure on the amount of time that the girls will be in the hospital but it will most likely be around a year. With God on our side it could be shorter but as the saying goes we have to hope for the best, and yet plan for the worst. So going a year without being able to wake up next to my husband every day, that is going to be a really tough one for me. I waited so long to be married, and it feels like I almost have to put it on hold which is really hard.
We have also been dealing with new changes in our finances. I am officially done working because of all the travel I am doing. And going from two incomes to one is not an easy thing. So that is stressful on top of everything else we are going through. Also trying to navigate my new role as a "homemaker" is a little hard for me since all my body wants to do is sleep, but there are dishes in the sink, bills that need to be paid, laundry that needs to done, floors that need vacuuming, and the list goes on. Our normal life has kind of been on hold for the past few months in dealing with all of this. So I am now playing catch up in hopes of having everything set for when I leave in July.
You know they say "God will never give you more than you can handle" but sometimes it feels like I just don't know if I can do this. I know I don't have a choice, I love my girls already so much, but it is just not an easy road. My heart breaks for every other parent whose child deals with different birth defects or illness because I feel myself right there with them. Certain movies can turn me into a puddle of tears within seconds flat. We know God has a great and perfect plan for us and our family, it is just so hard when you don't see the light at the end of the tunnel. It feels like we could be in the night for so long without seeing day. But joy comes in the morning.
I know I seem to do this in every post, but we are so incredibly grateful for each and every one of you who keep up with our life, for your encouraging words, your unending prayers, and generous support. Because of all of you there is a chance that our girls will be able to one day look at each other as separate healthy girls.
Prayer requests :
-Abby and Erins Cords to stay separate
-The girls will make it to 37 weeks.
-Traveling expenses to be met
-For Riley and I as we prepare to be living in two different places
-That God would be glorified through all of this.
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!