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.
First of all we want to wish each and every one of you a very merry Christmas, and a very happy New Year!!! We cannot believe that the holidays are here but are loving every single second of it!!
This past month has been one of LOTS of adjustments. We have feed changes, med schedule changes, sleep habit changes, and so much more. It's like bringing home a new baby times two, plus add in all the weird medical stuff and your in for quite the transition.
We had all the girls therapy evaluations done this past month and will start up therapy in the beginning of January. Needless to say that having two kids who require 3 types of therapies, means we will be there every day of the week. It's a little overwhelming to think about but I know we will get the hang of it and figure out the new schedule once we are doing it.
The girls are growing in leaps and bounds! They are doing new things every day. Erin is crazy and gets where she wants to go by rolling. If you turn around for just 10 seconds she gets to the other side of the room. The other day I found her under the Christmas tree pulling the lights off. So that is a fun new things to get used to. Abby is soooo close to fulling rolling over. She can roll from her back to her belly but can't get her arm out from underneath. Once she figures that out she will be on the move! She also has just in the past few days become so much more vocal! She used to be very quiet and would only make noise when she was upset, but she has started to babble and make noise when she wants attention which is a huge improvement for her. It is so wonderful to see them at home and getting comfortable.
Riley and I are also doing well. It has been difficult to adjust I am not going to lie. We didn't realize how hard it would be to get back up on our feet after getting home. We are realizing his job doesn't pay enough for us to live on so living with my parents is seeming to be the only option for the moment. We so badly want to get into our own space and let the girls have their own space. Right now all four of us are in one room. And let me tell you...it's tight. Don't get me wrong we are so grateful but it's still so difficult as new parents to share your space with not only your new kids, but also your parents (inlaws) and siblings (sister-in-laws). We are not ones to ask for help but in this season of our lives we have to. We need to figure out a way to be able to get into a two bedroom apartment and still have enough money to buy food and pay for utilities and we just can't. If you all could help us get on our feet we would be forever grateful. Our gofundme account says we have "x amount of dollars" when in reality that was what sustained us throughout the past year and now we are struggling. The money that was already donated covered all the time that Riley had to take off of work, it covered my lunch at the hospital every day, it covered parking at the hospital everyday. There were a lot of expenses we didn't realize we would have. And we are so grateful for those who donated and helped us through that time. But right now we need help. We need to get on our feet and give these girls what they deserve. If you feel in your heart that you want to help us we would be ever so grateful, but please don't feel obligated. This is the most humbling thing to have to do. You want to think that you can do it all on your own, but there is no book to go by for this kind of thing. And in this season of giving we know God is going to take care of us.
Things are different than I expected them to be being back in the "normal" world. I am so so grateful for the girls and that they are healthy and growing and thriving! But that doesn't mean it still doesn't hurt my heart some days. The other day my mom sister and I took the girls to see some lights that blink to Christmas music. It was so fun to see the girls watching the lights and kicking their feet and smiling. I was really enjoying myself. We were seeing lots of other families doing the same thing when I heard the mom behind us talking about her little guy who was bopping around us. I heard her say how old he was and found out he was the same exact age as the girls. My heart sank a bit. Since I have been home I haven't really had any one to compare the girls to. You don't ask a random stranger in the store how old their kid is so you can see if they're the same age as your children unless you've been chatting with them for a little bit. So to hear her say that and then watch her son made my heart sink just a little bit. He was so happy and full of life. Running around, dancing, chasing his sister, and calling his mama. He looked eons older than the girls, when in reality they are the same age. It hurt my heart because of all the things the girls could be doing and what they're missing. I know they're happy and that they don't know what they're missing but my mama heart knows. There are days I still wonder if they'll ever walk, or fully talk. We just don't know. I can't let myself go there because there is nothing I can do to change it, but I really hope that they have all the opportunities as any of their peers. I know it will get easier the longer we are home and the more used to having "medically complex" kids I get. Being in Philly everyone has medically complex kids, so everyone understands. Here it's just different and not the easiest.
Our days are different than most. They consist of multiple trips to the pharmacy a month, tons of syringe washing, lots of formula mixing, lots of puking, lots of fussiness, sleepless night because of giving medications, and and endless cycle of beeps from the feed pumps. We wouldn't trade our girls for the world, but we are still adjusting and getting used to our normal.
God has given us two miracles. And this Christmas season we look back to where we were last year and see how far we come and are so so grateful. We still have many challenges ahead but are willing to take them head on if it means making a life for our girls!! We are so grateful for each and every one of you! And pray that you are richly blessed this new year!
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!