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.
Tomorrow will mark 300 days that I have been in Philly. Come the end of June it will be a year. Lately the number are getting to me. Counting up the days we are here and counting down the days till surgery. 300 days is too long to be away from home. 274 days is too long for babies to be in the hospital, and the fact that there still is no real idea of when we will be home is so daunting. Yes we have surgery dates, and yes the prognosis is "good", but no one really knows how the girls will be after surgery and how long it will be till they get, or should I say we get to go home.
Having Riley here is so wonderful. Watching him with the girls fills my heart to overflowing. But it also fills me with such a sadness. Knowing the pain he must be feeling since he is missing so much. We try to fit so much in when he is here but it doesn't change the fact that he got pictures of their first smiles, got a video of some of their first giggles, he wasn't there to feed them their first spoonful of baby food, or to help them roll themselves over for the first time. I can see it in his face how much he misses them and wishes he could be here for all those things. I can't imagine what he goes through on a daily basis, and especially on the girls' hard days. The days Abby stopped breathing, the days the girls had horrible procedures, the surgery day that he couldn't be at because it was such short notice. He is one of my heros because he puts his family above his own desires. He knows that if he were to come and stay here, we wouldn't be able to have anything to go home to. And that is so incredibly important. But it doesn't make him having to leave any easier. We miss him every second he is away. Thankfully he is able to take advantage of the Family Medical Leave Act and will be able to be here for over a month starting the end of may so he can be here for the girls separation and few weeks afterwards. Granted FMLA doesn't include being paid, but he will have his job waiting for him when he goes back home once the girls are stable. So that is fantastic news and may 19th can't get here soon enough!
The girls are doing well. The skin expansion process is going well. Minor hiccups here and there but nothing crazy, Thank God! Your prayers work and we are so grateful! We spoke with our neurosurgeon while Riley was here last week and he is hopeful that the girls will make it through these next two surgeries and come out on the other side as two little girls who are no longer attached. There will be three teams of neurosurgeons involved along with our plastic surgeons, anesthesiologists, and so many others. We are incredibly nervous, but we are confident in the team. It is such a surreal though that within the next two months the girls will be separated. Like I said 300 days is a long time to be waiting for this. And it is more than 300 days that we have been waiting for this one event. On March 11th 2016 we found out that the girls were conjoined, that was 410 days ago. We have been waiting for this for over a year. So much worry, hope, sleepless nights, tears, and joys are going into this one day. This one day will change not only Abby and Erin's lives but also Riley and mine as well. I have to give it to God every second. There is not a second that goes by that I am not thinking about it. And I know that if I don't give it to God every time I think about it I am not going to make it.
Sending your children in for a surgery like this is something I would hope and pray those reading this will never have to do. We don't take this decision lightly. We know the risks, and we know what the benefits could be. But that doesn't make it any easier. These little girls have already been through so much in their little lives. I cannot wait to snuggle them for the first time as their own little self. Holding them is tough. They usually just lay on my lap, or it is uncomfortable to hold them and within 10 minutes its just too much not only for myself and whoever else is helping me, but for the girls as well. It is just not comfortable to be held. The other night as the girls were falling asleep I couldn't help the tears falling down my cheeks. They were fussing like they normally do, but were little more because they are teething and just aren't very happy in the evenings from it, especially Abby this night. And as I watched her fuss every ounce of my being was screaming "pick her up and snuggle her" but I couldn't. I couldn't hug her and rock her to sleep. I couldn't give her that little bit of comfort. And it broke me for the umpteenth time. I am so ready to be able to hold my babies. But getting there is so incredibly hard. It's a constant battle between hope, and fear. And only God can make that battle stop and like I said I try and give it to him every time I think about it. The outcome is already written and there is nothing I can do to stop it from happening. He already knows. I just have to be willing to follow His lead because He knows what He is doing.
I know I ask for prayers so often but please keep praying. We need that constant flow of prayers. The girls have a CT scan coming up around the 13th of may. They will make another model of these scans so they can have a very recent 3D model of the girls vascular structure to prepare for surgery not even two weeks after that. Riley will be here on the 19th of May. Thank God he will be here because going into this is very scary. Having him here to sign all the paperwork and sit in on all the meetings will be more helpful to me than anything.
The girls are a little stuffy right now, pray that is is just teething and no sickness. Sickness could push our timeline back by months and I am so terrified of that happening. So please please please pray against sickness. I don't know if I could handle an extra 6 weeks because of the girls getting sick.
Pray for our surgeons and doctors as they go into this. From what I understand this is the first time CHOP will be separating craniopagus twins. If they have done it before it was a very very long time ago. I can only imagine how our doctors and surgeons feel. They are not only our team, but have become our family. I can tell they truly care about the girls. They are incredibly qualified to do this and I have faith that their hands will be guided by the ultimate physician. So pray for them as this must be an incredible weight to bear, knowing you will be changing lives.
Pray for our family that we can make it through these next few months financially. If things end up going a little funny Riley could end up having to be here longer. Like I mentioned before he will not be getting paid for most of the time that he is here so we live off of the generosity of others. God always makes a way and if this is where Riley is supposed to be, God will make it so.
We so appreciate all of the support we receive. The notes I receive in the mail lift my spirits so much! I know I have posted the address of the Ronald McDonald House, but if anyone were to want to send Riley an letter please let me know and I would be happy to give you the address where you could send that as well.
We are so blessed. Even though this journey and excruciating some days, we know how blessed we are to have two healthy little girls who despite the odds are doing so well. They truly are little miracles and we couldn't be more grateful for them!
So I was scrolling through facebook and came across a post by Audrey Roloff. I love reading her posts and her blog, they are always so uplifting and filled with hope and joy. Today her post really struck me. It said, "I was recently reading a devotional that I receive via e mail, and I was struck by these words: "I tell you honestly that it is not your ability that matters; it's the strength of your faith in My (God) ability to do what you cannot. You must stop relying on your own efforts and common sense and begin to rely on Me..." I feel there are so many days where I try so hard to rely on myself. And those days are normally not good days. So many times people will ask "How do you do it?" or will say "You are so strong". But in all reality it isn't me. There is no way I could make it this far on my own. These is a verse that talks about how His (God) power is strongest when we are the weakest. And that is the story of my life right now. I wouldn't still be standing if it weren't for the all knowing God who comforts me every single day. He knows the outcome, He knows the process, and He knows every little bump along the way. So why not trust him. I want to challenge you all to do the same. We each have varying degrees of needing to rely on God in our lives, whether that is getting through the day with sick kids, or passing an exam, or getting through the work day without stressing, or dealing with the death of a loved one, or like me watching your children fight the hardest fight of their lives. We all need to rely on God and realize it is Him at work through us, it is not us on our own.
That all being said things are pretty status quo here in the Delaney girls' world. We are expanding right on schedule and everything seems to be looking good so far. The girls are handling everything in stride and are such little troopers. One weird thing that has started to happen is that Abby seems to want to choke on her spit ups. We don't know what has changed to make her do this but it has happened twice so far that she will go to spit up and get "stuck" so to speak and stop breathing. I am not sure if it is related to her reflux and it hurts and so she bears down and stop breathing or if she actually gets stuck. It is pretty much a guessing game. But like I said it has only happened twice, but those are the two scariest moments I have ever endured and I pray that I never have to go through it again. If Abby were to stop breathing Erin would also have ramifications since they share blood supply. So that thought alone terrifies me. My knees go weak and I feel like the world moves in slow motion. But God willing she doesn't do this again and things will keep moving smoothly.
Riley comes to visit for Easter next week and we are BEYOND EXCITED!! He hasn't been here in 6 weeks and we are so ready to have him back. A lot of the reason he is able to take a week and a half off is because of all the wonderful donations we have received over the past few weeks. We are blown away by peoples generosity. It makes it so that we are able to be a family under one roof, even if just for a little while. That means the world to us. We are also going to start trying to save a little bit so that we can buy a house for when the girls and I come home. I so badly want to have a nice house to bring the girls home to where they have a nursery and a play room. One that we can stay in and that the girls can grow up in. God willing we can save enough up that we won't have an insane mortgage. But we would much rather a house than having to move into an apartment. There isn't enough room at my parents for us all to be there so God willing we will have a new place to go home to before we actually go home.
If anyone is near the Tri-State Area (NY, NJ, PA) there is a fundraiser happening this Saturday for our family. Bounce houses, snack bar, pizza, rollerskating, animals, pony rides, and so much fun for the whole family! They will also be having a bake sale going on! It is $7 admission to play. I worked there for a few years and the staff are like family. We so appreciate what they are doing for us. It has even been broadcasted on the Sound of Life Radio Station. Please tell your friends! We will also be skying most likely a few times during the day to say Hi and be a part of the fun! There is a facebook events page you can get more information from. I will post the link below.
Please keep us in prayer as we get closer and closer to separation! We are trying to get as much fun time in with these girls before things get hard again. We so appreciate all the prayers and donations. We wouldn't be able to do the things we have without them. We are incredibly blessed.
Also please say a prayer for my family as my grandfather passed away this morning. We are sad that he never had a chance to meet his great grand babies, but I know he is watching them from heaven. We are happy that he is at peace and no longer in pain, but it is still sad since we will miss him very much!
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!