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.
The girls will have their first surgery to prep for their cranial reconstruction in just 49 days. We leave for Philly in less than that. I just don't feel ready.
It is amazing how quickly you can forget the hard hospital days. How quickly being home is "normal". Those hard days don't leave your mind...but the pain of them gets easier and easier, until you start staring them in the face again. The thought of watching the girls getting wheeled off into the operating room again just makes my knees weak. It became such routine when the girls were in the hospital. They each have gone through around 5-7 surgeries, not including all the times they had to go under anesthesia for scans and PICC lines. I was more numb then, I was used to it. Now I have gotten used to "normal" life. Where the worst thing that they go through is falling down or an occasional shot/blood draw. Going back to all the pokes and prods breaks me. They are so much more aware now. They understand so much more. And THEY have gotten used to normal life. Their life in the hospital isn't even a memory for them, and they have no idea what they are about to go through again.
It's funny, you can tell yourself over and over again not to get too comfortable, that this isn't the end of all the hospital stays. But there is a part of you that pretends it is. And then when those hospital days come creeping in every ounce of you wants to scream and run from it. I don't know if you have ever felt that panic feeling where all you want to do is run and get away, the anxiety that rips through you so that you feel yourself shaking. But those feelings creep in when I think about this stuff again. (yes I have talked to my doctor, and please don't worry I have plenty of support). I know that God has such a plan through all of this. He knows exactly what Abby and Erin are going to feel, He knows exactly the anguish Riley and I feel going into this. It's so easy to say "yes, I trust the Lord" when things are easy. But man when you are looking at that storm head on, your knees wobble a bit and you get shaky. Even knowing he is there. It's just our human nature. I tell myself every time I start to "go there" that I am giving it to Him. I am giving him all these fears and doubts and worries.
Riley and I talk about how we are feeling about all this a lot with each other. We want to make sure that we are supporting each other in the best way. When the girls were in the hospital last time a lot of the focus was on myself and the girls and how we were doing. Which is totally understandable. But what was missed a lot of the time was how Riley was doing back home. Riley will be staying home again during these few months to keep working and keep paying the bills while we are gone. It is really hard for him to be hundreds of miles away and not be able to hold the girls' hands through procedures and have to just sit and wait for the phone calls about how things are going. It pretty much broke him last time. We spent a long time working together to get anxiety and depression under control for the both of us. (Side note: mental health is never talked about enough in my opinion, especially with parents of special children, and it should be talked about way more). Now heading back into it we are nervous of those feelings. Riley has a better support system in place this time, but still will need friends and encouragement while we are gone. Just because he is home, doesn't mean he won't feel just as anxious and alone as I will feel.
We have slowly been prepping for our trip and so many of you have helped us with that, by sending items off our wishlist! We appreciate that so much! You have sent us things that will help make things more comfortable/easier for us as we travel and have an extended stay away with the girls.
As of right now we have a request in for a room at the Ronald McDonald House in Philadelphia. Right now they have a decent amount of availability because of COVID so we should be able to get in alright. But because of COVID things there are a lot different. Depending on their restrictions I am not sure how long I will be able to stay there. Not because of anything on their part, but to make sure that I can have support from my family, and have Riley be able to visit. Because of COVID RMH has very strict rules in regards to visitors in that they aren't allowing any. They may make exceptions for immediate family, but I am not sure what that actually looks like. It is something we are going to play by ear because I can't do this all on my own and I have come to terms with that. Through a lot of this journey I have said "I can do this", "I will get through this". But this is one thing that I know I can't do. I can't spend 4 months alone in Philly without physical, in person support from my family and Riley. I need to be able to have some time to myself otherwise I will burn out very quickly. Being home is one thing, but being in a room without the normal home comforts alone with two special needs toddlers 24/7 for 4 months alone is where I know the line is. So please pray that restrictions ease and that because of the vaccines and spring that we are able to have my mom and Riley visit. This is a really big scary worry of mine that keeps me tossing and turning some nights.
As of right now the girls will have their first surgery April 5th. They will be going in to get skin expanders. This will hopefully be basically an outpatient surgery (maybe one night). I will then have them staying with me at the Ronald McDonald House. They will heal for about 3 weeks. During which we are 98% positive the girls will be receiving outpatient therapies to continue their current therapy so they don't fall behind any. We will hopefully have Abby's walker before we leave to bring with us, and the girls are both getting new orthotics delivered this week. So during those 3 weeks we will hopefully be getting therapies. Then after the girls incisions are healed they will start getting their expanders filled most likely two times a week. So we will have therapy appointments and expander appointments. Our doctor thinks it will take about 6 weeks to get the expanders filled enough to have enough skin to fix everything he would like to fix. That will put us into July when the girls will have their big reconstruction surgery. They will be fixing the top of the girls skulls so that they will not have a large opening at the top. Right now the girls each have a hole (Erin the size of a tennis ball, Abby the size of my hand) where there is no bone on the top of their heads from where they were connected. This surgery will correct that and give the brain a more "normal" environment to grow. It was also keep the brain safer. For that surgery the girls will be inpatient for at least a week to recover and receive pain management and infection control. Once they are discharged we have been asked to stay in Philly for about another 10 days or so for a few follow up visits to make sure that everything is healing properly. Meaning we will most likely not be home till around August sometime. Fingers crossed everything goes according to plan and we aren't there longer than we need to be. We will already be spending Easter, mothers day, fathers day, the 4th of July, and the girls' birthdays in Philly. We don't want to be there into the fall.
So here is the part where I ask for advice. Last time I just had to worry about myself and packing the things I needed for an extended stay. This time will be a whole lot different. If you have any ideas on how to pack for not only one season but two(cool weather and hot weather), how to pack toys, bedding, etc please let me know! I am worried I will forget things. I am worried I won't have enough clothes for us. I am worried I won't have enough space in the car for everything (stroller, pack-n-plays, walker, play mat, play yard fencing, toys, clothes, medical supplies, diapers, etc). Any and all advice would be welcome! Also I want to try and figure out some ways to make things easier for Riley. If you have any ideas on what I can do for him that would be great as well (frozen meals, cleaning supplies, food shopping, etc). You guys always have great ideas that I hadn't thought of!
We so appreciate you guys. I wish I could put it into words. You guys have carried us through so many hard times with prayers, wishlist items, donations, encouragement, and so much more! We are beyond blessed. One day the girls will understand and will be blown away by the support. I can't wait till that day!!
I will update again most likely as things get closer or once we are in Philly. Please keep us in your prayers during this season. Pray for Riley and I, for the girls, for our doctors, and for our families (since they can't visit or come for surgeries). One day this will all be just another chapter in our journey of raising previously conjoined twins!
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!