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.
Romans 8:28
Romans 8:28
Coming into this season I thought I knew what I was in for. I thought I knew the feelings I would feel, and how things would go. I thought I would be able to handle things better because I had done it before (so to speak). I thought being away from Riley and friends and family would be easier because it is only 4 months compared to 17. But it's nothing like I expected. Things have overall been going very well. Right now the girls are receiving therapy at CHOP 4 out of 5 week days. The girls' therapists are great and the girls seem to thrive when they are getting one on one therapy time outside of the home. Abby seems to be exploding with her abilities. I love it when they have little developmental jumps. She is climbing up on the couch, standing on everything, cruising along the edge of the couch, learning how to climb down off the couch, and can basically run when she is in her walker. She is changing and growing every day. Despite being away from home and having to start a whole new schedule she is still moving forward. We are working on possibly getting her some botox injections for her muscles. Her left leg and left arm/hand and very tight. So once CHOP can get things approved we are going to get that for her. We are hoping it would really benefit her and let her use those muscles more than she is able to now. Erin is also doing great. The other day I watched her walk down 3 steps all by herself (I was standing on the step in front of her) she held onto the railing and slowly but surely moved herself down. She was so proud of herself. She is loving exploring the farm and playing outside which is something we haven't done much of to date. But when we say "do you want to go outside" she runs to the door and starts screeching. It's so fun to watch the lights turning on in her head and she is learning and understanding more and more everyday. They are both doing pretty well eating wise, but because they are being fed through their g-tube they don't seem to want to eat very much at all. Once they are done with surgery and all their current procedures I think feeding is going to be the next being milestone. It just requires changing their current feeds and seeing if they can eat enough to keep them gaining weight (and the way Erin runs around these days, it may take a little while). But being able to think about that is really exciting. We also get their girls expanders filled once a week. We try to schedule their fills around their therapies so we don't have to take an extra trip to the hospital. Expander fills are probably the girls least favorite time of the week. They don't like getting them filled, and I don't blame them. For those of you who don't know what a skin expander is, it is like a water balloon under the skin that slowly gets filled. There is a little tube attached to the balloon that leads to a little dome. All of that lays under the skin. To fill the expander a need is inserted into the dome and liquid is pushed in through the dome and tube to fill the balloon. (I will try to find a picture to help explain) It hurts when the needle is put in (less than a shot, but when you are 4 and don't understand whats happening, you really don't like it) and then the skin gets really tight as the expander gets filled. Then throughout the week things relax enough that we get to do it all over again the next week. Unfortunately expanders can be very fickle things. They can move and shift. When the girls had expanders a few years ago one of the ports moved and we couldn't find it so the girls had to go back into surgery to fix it. Luckily that hasn't happened this time, but there is a slight complication with Erin's expander. Since Erin is super mobile and falls all the time her expander has shifted every so slightly to start covering the port. It's made it very hard to fill it since there is a very small place to insert the needle without breaking the balloon of the expander. Our NPs have been struggling with getting it to fill and we have needed Dr. Taylor (our plastic surgeon) to fill it since it is so touchy. We are hoping that it doesn't overlap anything more than what it has because once it does we won't be able to expand anymore. We want to expand enough to fix all the bald spots and scarring on her head. So we are praying everything is smooth from here on out. Riley was finally able to visit for a few days this past week for the first time since we left. It has been just shy of two months since we have seen him so it was long overdue. We had such a nice time just being able to be a family again. We were able to bring him to a few of the girls therapies and then spend a couple days relaxing on the farm with no appointments. He even was lucky enough to meet a brand new baby sheep that was born this morning!! What we didn't expect was how hard saying goodby again was going to be. When I was planning the surgeries and appointments before we left home I was thinking how much easier this time was going to be since we had been through it before. But man was I wrong. Having been through it before you miss everything even more. And this time we now know what it is like to be home all together as a family. And we know what we are missing when we are apart. It is especially harder for Riley since he misses the girls and I so much more this time around since he was used to having us all in the house. It's a hard thing to explain. But needless to say there were tears shed by both of us this afternoon as I dropped him off at the airport. Having to say good bye to your spouse for long periods of time is so so hard. You get so used to the companionship, and having someone sleeping next to you that when they leave everything is all up in the air till you get used to being alone again. There are a lot of restless nights and a lot of teary phone calls. But we love our girls and we know that all of this is worth it for them. We love Riley and are so blessed that he is able to work and keep our home and lives moving so we have it all to come back to. I posted yesterday that we are thinking about doing another t-shirt fundraiser. Right now our finances are very tight. And with doing 2 hours worth of driving 4 days a week along with parking and food and any other necessities things are just tight. We would also love to have Riley visit more often but we can't afford for him to take time off of work. So this could be huge in helping get him here more often. We were going to use the same company we did last time but the price of their t-shirts is pretty expensive and we would only be receiving about $5 from every shirt. So if you know of anyone who does screen printing that could help us out that would be awesome!! We also have some gift cards on our wishlist registry along with other things that we can use. I will be posting the link below. We so appreciate those who have reached out to encourage and pray for us. This chapter of our story is harder than we were anticipating, but knowing our Delaney twins family is rallied around us gives us so much strength. We have also done a few things here to help spread some "hope" which also really helps us be uplifted. We were part of the CHOP runway event and the girls got to "stroll" the runway in boutique outfits. It was so fun to be able to spread the message of hope and raise money for CHOP. It gave us a much needed boost. We were also able to meet another couple of conjoined twin parents whose baby girls are in the NICU and still conjoined. Their girls are only about a month old. It's always a special thing to be able to meet other conjoined twin families. There are so few of us that meeting any of them is a highlight for us! Please keep on praying as we move forward: -Pray that our finances are met and that we are able to afford all of our needs without stress -Pray that Erin's expander doesn't cover the port anymore than it already is -Pray that both the girls expander fills keep going smoothly so surgery doesn't have to get pushed -Pray that Riley is able to visit more often -Pray for my mom, helping take care of the girls is a tough job and she's been amazing! (she is home resting and getting ready to come back in a little over a week from now) -Pray that the girls keep improving with their skills in therapy -Pray that the girls sleep better (it's been tough the past week or so) We love you all and know that God has placed each and every one of you in our lives for just this reason. You all give us such strength and encouragement! I do get the caring band messages, fb messages, comments, and gifts. We are so humbled and grateful!!
2 Comments
Dawn Kirk
5/31/2021 05:22:28 am
You continue to do an wonderful job for your girls! So glad Riley got to visit! The girls are amazing…love the pictures and hearing about all their new abilities! You’ve got this…remember to breathe! ❤️❤️🙏🏻🙏🏻🙏🏻❤️❤️
Reply
Anne
5/31/2021 05:37:46 am
You and Riley, Erin, Abby and family are so courageous. By the strength and Grace of God you are unstoppable! So thankful for your ability to persevere through mountains of trials! Praying for healing, finances, and the strength that you need to be multiplied every day!
Reply
Leave a Reply. |
AuthorMy 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! Archives
March 2021
Categories |