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 past few months have been a whirlwind of joy, fear, anxiety, love, sleepless nights, and more growth than I ever imagined.
My wonderful husband decided it was time for me to have something nice of my own and got me a new computer so that I can continue to blog (and of course do other things but blogging is a big plus). I have severely missed this outlet along with all the incredible followers who I get the pleasure of interacting with. So it is because of him and his thoughtfulness I am able to blog and update you all on our journey.
I can't believe it is already almost April and Easter. It amazes me how time flies. the girls are doing fantastic. Everyday is a new learning opportunity not only for them but for myself and Riley as well. We ended up not getting home nursing care because Abby now doesn't qualify because of how much better she is doing! When she left the hospital she was recieving 4 breathing treatments a day (one of which was at 2am ugh! thank God that one is gone) but she is now been off those breathing treatments for a while now, thank the Lord. But that was her main qualifier for home nursing and since it is better we are on our own. So the days are long and busy but we wouldn't trade them for the world!!!
So lets play some catch up...
In January we were able to move into our own place. We are in a quaint little townhouse only 5 minutes from my family. We are loving every second of our little family being together in our own space. The girls are so happy to have their own room and their own space to play. That month of January was all about getting into a routine. When we were living with my parents it was hard to stay in a routine because there were too many people and too much going on all the time. So now the girls have a nap time and a bed time and it is glorious that they know those times and stick to them! We also have gotten into the therapy routine. The girls go to an outpatient therapy facility here in our town. God has truly blessed us that there was this hidden gem that I never knew about till we needed it, and it is only 3 minutes down the road from our house. We go there three days a week for a few hours each time for the girls to receive physical therapy, occupational therapy, speech therapy, and feeding therapy. The therapists are wonderful and very helpful when it comes to getting the girls the equipment they need.
February turned out to be a little more crazy than was anticipated. We traveled to Philly for the girls to have a few follow-up appointments with Neurosurgery, plastic surgery, general surgery, nutrition, and neurology. Every appointment found stellar results. The girls CT scans showed that their brains are healing better than anticipated (complete answer to prayer). Erin's brain look practically normal and Abby's brain is way better than they thought it would. These girls never cease to amaze us. They are living proof that with God all things are possible, they are living, breathing miracles. The main reason for these appointments were to talk about when to do reconstruction of their skulls. Since the girls were separated they have no bone covering the tops of their skulls, which eventually needs to be fixed. They were thinking of doing it sooner rather than later till they found out the the girls growth sutures had closed. The skull is made of different plates if you will. When a baby is born those bones can overlap so the head can fit through the birth canal, and then babies will also have a soft spot for a while. The pressure from the brain underneath keeps those small little gaps between the bones and makes it so that your skull can grow. Well since the girls brain isn't putting pressure on the bone (remember the top of their head is open) the bones have fused. Because of that they need to go back to the drawing board a little bit and come up with a more tailored plan for these girls. They also said that because the girls are doing so well they don't want to cause any type of set back right now. So as far as reconstruction goes we are going to wait another 6 months (end of summer) go back and get more CT scans and go from there and see where we are.
Our Philly trip was only supposed to be one week. But since the plans for reconstruction changed, so did the plans for getting Erins nissen done. She had been having some horrible issues because of her reflux, she wasn't tolerating feeds, she wasn't gaining weight, she was projectile vomiting all the time (one of which resulted in aspiration, a seizure, and a trip in an ambulance), and was just miserable. So in talking back and forth with our CHOP team they determined Erin would also need some type of fundoplucation just like Abby had already had done (Abby was doing fantastic with her feeds and gains weight like a champ) . So we decided to stay in Philly for some extra time to let Erin get this surgery done. I wasn't anticipating how difficult it was going to be to have her readmitted. We had fought so incredibly hard to get these girls home and here I was signing the papers to have Erin put right back where were fought so hard to get out of. It really messed with me. All the thoughts start running, "what is if she catches the flu or any other anything from being in the hospital?", "What if they have to keep her longer because of complications?", So many what ifs. But we knew it was the right thing to do, so against all my crazy feelings Erin was admitted and had her surgery done. Leaving her overnight while she was in pain and upset was tough for me. If she had been anywhere else in the hospital I wouldn't have left, but she was on the floor that was like our home when the girls were still conjoined. We knew all the staff and knew she was in the best loving hands she could be in. You forget how terribly you sleep when your child is in the hospital. The next morning I woke up feeling like I got hit by a train. Even though you are "asleep" your mind is still racing. Every time you slightly wake up you wonder how your child is, are they cold, are they crying, can they reach their blankie, simple things that you just can't seem to get out of your head. It's a miserable feeling and my heart breaks for my friends who are still in that position because it is one of the worst things in the world. Please join me in praying for those who are still with the children who are in the hospital. I have many friends who are still watching their children fight as hard as their little bodies can handle and the only thing that comforts is prayers.
Erin's surgery went well, she had a few complications when it came to her sugars and her feeds but we have since then figured them out and she and Abby are now on the same feeding schedule for the first time since we have been home!!! It's glorious.
We will have to go back to CHOP for some appointments the end of may/early June and then again at the end of the summer. Traveling back and forth isn't the easiest thing. We can't afford plane tickets so we drive. And taking a 10 hour drive with two little ones isn't easy. But this last time the Ronald McDonald house had a room available which helped tremendously, and also provided us with tickets to bring the girls to the adventure aquarium on one of our free days. We couldn't be more grateful to Ronald McDonald House Charities, they are seriously our home away from home.
A little specifics on the girls and their new abilities :)
Erin is rolling, sitting up, able to get herself sitting up on her own, and able to get on all fours in a crawling position. She is working with her physical therapists and a really cool machine that helps her walk. Its basically a harness that suspends her in the walking position above a treadmill. This way she can learn to walk without her total body weight which makes the learning part a little easier.
Abby is rolling all over. She is very feisty these days and seems to have a strong opinion on everything. she is working on her sitting. She just got a rifton chair which helps stabilize her when she is sitting so she can sit and play and not worry so much about falling over. We also are waiting for her stander to come in which will help her learn how to put weight on her legs. We are also waiting on some knee immobilizers which will help her knees now buckle when she is practicing standing (without the stander). All of her therapists and doctors are so amazed at the progress she has made in such a short amount of time. She is not far behind Erin, which is amazing since she only had a fraction of the rehab time that Erin had.
We are so grateful for the love and support that you all have shown us in these past few months. The prayers, gifts, donations, diapers, handmade gifts, etc have been such an encouragement. We love that our girls have touched so many lives.
It's a funny thing......online and through the media there are so many loving wonderful people who embrace our girls as if they were there own (there are always those who beg to differ but we ignore them :)) But the other day I took the girls to story time for the first time. I was so excited! When I used to nanny I would take the boys to story time and I would sit and imagine what it would be like to bring my own children. I remember being pregnant and wondering if the girls would ever make it to story time and what it would be like. So I guess my expectations were a little high but for a first time mom who has children who she feels deserve the world I guess its kind of normal..? I don't know. But I wasn't expecting to feel like I was on the outside. It was so strange. I haven't really brought the girls to any "children's activities" because of flu season and wanting to be extra careful, but since they go to therapy with a zillion other kids I figured we would try story time. But it is such an interesting dynamic bring children who have "special needs" into an environment of "normal" children. All the moms chat and make small talk, they talk about their kids, and what they're doing for fun with them. But not one of them came to say hi to us. Everyone saw us. I see the looks, the curious eyes. Its so hard. I want people to not be afraid to come and say hi and meet the girls and learn about what miracles they are. I just wish people weren't so scared. Granted I remember being on the other side of things, not knowing what to say, or how to react, but I also never had anyone tell me its ok to ask. Just don't start with that. Come over, introduce yourself, ask how I'm doing, and then sure feel free to ask about the girls. I'd rather you know and feel comfortable, than not come over at all. These are the "new" things for me. It's funny when you are in the hospital all you want is to get out. And then when you are out you realize what a safe space that is. A place where no one thinks you or your children are strange. No one stares at you because you are attaching your child to a tube for their lunch. It's a whole new world. My prayer is that the girls grow up knowing that just because they may be a little different doesn't mean they are any less. That they know they can do or be anything they want, and that people should never feel uncomfortable saying hello to them :)
We love you all so much! And boy does it feel good to be back blogging! You will definitely be hearing from us more often!
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!