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.
This hurricane has been the talk of our town for the past week and a half (feels like longer). By Wednesday every thing was being bought out of the stores. Water bottles were gone, bread was disappearing, and low and behold all the eggs and milk seemed to be flying off the shelves. We all joke that everyone was going to have a French toast party, but in all reality everyone was preparing for the hurricane.
We live slightly north of Charlotte, in driving distance it is about a half hour (with no traffic). Charlotte is roughly 3-4 hrs from the coast depending on where on the coast you are going, so we knew we weren't going to get the worst of it. My sisters (Dana and Rachel who are also identical twin girls) go to college at the University of North Carolina in Wilmington. They were evacuated and all classes were cancelled until further notice since Monday. It's been tough for them to watch the town they've lived in for the past few years being torn apart by this storm. We are hoping and praying that their apartment and all their stuff is still safe and dry. They aren't sure when school will start back up and they are worried since it is their last semester before they graduate. One of them is student teaching, while the other is doing an internship. So we are praying that UNCW is able to get back up and running without having the school year all messed up.
Here where we live we are getting the worst of it as I type. It is super super rainy. There is more rain than NC has seen in a very very long time if ever and it is still coming down strong and is supposed to keep coming down strong for another couple of days. Luckily we are far enough from Lake Norman that we don't have to worry about the lake flooding and we are living in a high area. So the flood risk to our home is very very low thank the Lord. The thing everyone here is most worried about is the power. Luckily we still have power, but we can't say the same for most of the rest of our town. We are the only ones in our family who have power right now (the rest of my family lives within 5-45 min from us and none of them have power). So we are very lucky and blessed and know that God is watching out for us and our precious girls. As more rain comes and the ground gets even more wet the threat of down tree gets greater and greater so hopefully the power stays on, but if it doesn't we are well prepared.
The girls are doing well! We have been seeming to battle change of season colds, along with 2 year old molars (I hate those things). So some of the nights are long and feel like they are never ending, but then the morning comes and we try and start afresh. Erins crawling is becoming amazing. She goes everywhere and anywhere and we are working hard to babyproof everything in our house. The newest addition we have is a baby gate that she hates. We put it up in a place that she can't get to the kitchen or the stairs and there are days that she will just sit in front of the gate and whine. It's pretty cool to see her coming out of her shell and becoming little miss independent. She explores and loves finding things under the couch that didn't realize were lost. And little miss Abby is starting to sit up on her own. She is so close to being able to sit herself up on her own but when you put her in the sitting up position she can sit there for a few minutes. We are so proud of her and how far she has come. We are so excited to see how well these girls are thriving.
One thing we ask for prayer on is the girls eating. There are many days I start to feel very defeated. They're making tiny steps forward but not as many as I was expecting. Things haven't changed very much since we came home from the hospital almost a year ago. They both can take things by mouth, can can swallow but they just don't seem to be interested. A lot of times they gag or will reject everything altogether. We've tried so many different foods, textures, sweet savory, crunchy, puree, little pieces, puffs, melts, teething biscuits, and basically everything else you can think of and nothing seems to really get them interested. It's hard for me to not be able to change it, or see big progress. I get the same question all the time of "how long will they have the g-tube". My answer is always we don't know. I was hoping and praying that the girls would all of a sudden just "click" when it came to eating but they just don't want to. They also don't seem to talk much. They will babble and say mama and dada, but they don't know what they're saying and don't associate mama with me or dada with Riley. So I worry about that as well. It's so hard because there is no book to follow on this. I can't read "what to expect" for toddlers because my toddlers are different. I can't go by what a "typical" 2 year old is doing because the girls aren't expected to do that. It's just been hard for me lately.
Because of those things being hard for me coupled along with being with them in the hospital for the majority of the time by myself (with the help of my husband, mom, and other family members visiting) I've been having a hard time letting go. Since the girls have been home the only people that watch them are either Riley, my mom, or my mother-in-law. Other than that they are always with me. I'm so afraid to leave them (Even if just for a few minutes) with anyone else. And not only that but I am having a hard time letting anyone else have a say in anything to do with them, even my husband sometimes.
Being the parent of a medically fragile child is a strange thing. You develop such strength and perseverance that you don't realize that you are also scared and tired. Since I made so many decisions for the girls when I was in Philly (from when to change a diaper all the way up to life saving measures)I've had a hard time letting anyone else have a say. Even if that means deciding whether or not to for-go a nap, or how to handle them girls when they have a temper tantrum, or when to call the pediatrician. I'm not able to be away from them for more than a few hours at a time. And I feel like I'm failing my husband because of it. I'm being very transparent because I feel like there must be others out there that feel the same way as me and are just as afraid to say it as I am. I feel like I worry about the girls so much and it takes up so much of my brain and time that my husband doesn't get the attention from me he not only needs but deserves. And it all stems back to this need of not being able to let go. When you watch your child clinging to life and you are needing to be strong for them and make decisions that affect every aspect of their life you feel like they need you that much even when they are well and happy and thriving. You know in reality they don't but there is a part of you that feel like if you leave too long something will happen, Abby will aspirate because of random reflux that leads to a vomit and no one saw the early signs that I can see, or Erin will have some weird freak out moment and no one will be able to soothe her so she cries till she vomits which may induce a seizure like its done before. It's a constant fear that things will go wrong because someone other than you made a decision for you. And when you've made all the decisions on what you thought was best for your child's health its incredibly difficult to let anyone else have that power because what if they're wrong and you were right.
My husband and I started doing a devotional called the battlefield of the mind and I am praying that the Lord will help release these fears from me. That He will give me a peace and a calm that only he can give when it comes to the girls. I'm praying that he helps me to let my husband have more of a say from things as little as nap time all the way up to the big things. I am praying that I am able to shift my focus not "away" from the girls but onto the things that used to make me happy like spending time with my husband and going out and having fun. It's tough being a mom these days let alone a special needs mom. So hopefully God will keep working on me because He knows I need it!!
We love you all and are so grateful for the wish list items that we have received and the go fund me donations. Life has been pretty tough on us and we are just waiting for a break in the clouds so to speak. We didn't expect it to be this hard because since my husband loosing his job and getting a pretty decent pay cut when starting his new job its been a struggle, but we know God provides! He was seen us through this far and I know He won't stop now! So thank you all again for being our answers to prayer!
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!