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.
Wow, I didn't realize how long it has been since I last wrote a blog post. I have been doing a lot of updating through just normal facebook posts. But I figured it was time to get the blog back up and running!!!
It is crazy to think that in 2.5 short months the girls will be turning 6! I don't know where the time has gone. It feels like just yesterday they were itty bitty babies and I was longing for them to be separate and home. If only I could have looked ahead and seen where we are now there would have been much less worrying.
The girls are doing really well as of late.
Erin has healed great from her most recent surgery. She is finally off all of her antibiotics, we were on them for a very long six weeks. She is happier than she has been in a while and it is so wonderful to see!! I had posted earlier today about Erin walking funny and needing to see the doctor because of it. We went and saw her pediatrician today and she isn't very concerned. There are several things it could be, but for this moment in time since she isn't in any pain and there aren't any other "symptoms" that we can see, we are just going to keep a close eye on her. If she is is doing the same or worse by monday/tuesday we will most likely take her to get an x-ray just to be safe. It is possible since she falls often that she could have what they call a "toddler fracture" where they just crack something. So that will be the first step if she doesn't seem to get better. If we end up getting an x-ray and it comes back with nothing we would then have to think that it may be something neurological....which I don't even want to think about that, that is a whole other can of worms that would have to be opened. But at this moment we are thinking she had a little growth spurt that has made her feel funny and have to regain her footing. I know a lot of people have commented that maybe it is an injury from the trampoline. But Erin won't even walk on our trampoline, and she hasn't learned how to jump on her own yet, so it is very unlikely that it is an injury due to the trampoline I promise we are super careful, and only once in a while Riley or I will go on with them. Most of the time it is Abby hopping around on her knees, and Erin crawling around playing with the balls. We also had her ears checked and they were fine. So it is just a matter of waiting and watching. But she doesn't seem to be in any pain, she is just a little limpy and unsteady at the moment.
Abby has been doing fantastic! Just in the past few weeks she learned how to walk in her walker all by herself. She gets set up in her walker and she just takes off. She is still learning how to steer and how to get down from her walker, but as far as walking goes, she is doing amazing. One of these days she will realize she can do it all on her own and just start walking! She is also super engaging lately. She loves to play with you, be held by you, be read to, etc. Where as Erin is more likely to be off playing with her toys. Abby loves to be social and spend time with people, she is 100% our social butterfly.
Some new things that are happening/in the works. We have decided to get the girls back into school this coming year. We aren't 100% sure what that will look like yet as we haven't had any IEP meetings or anything of that nature. But we have spoken with the principal of the school and they have it in the back of their minds for this coming year that the girls will be in school. We are excited and nervous, but we know that it will be so good for the girls socially to be around other kids. They will be able to work on communication with their teachers 24/7 and hopefully it will just broaden their horizons and give them a whole new wonderful world to explore.
We also have new beds coming for the girls. I know a while back I had posted about beds that we had modified for the girls. They have been wonderful but it is getting harder and harder to get Abby into her bed since she is getting bigger and heavier. So we were able to get special beds through insurance that will not only keep the girls safe, but they are 100% able to travel with us while is AMAZING! They come with a memory foam mattress, and an air mattress. This way when we go to philly or on any trips we will be able to fold up the structure of their beds (kind of like a tent) and put them in a rolling suit case (comes with it) and it can get put right in the car! We are very excited for these beds and they should be able to to be delivered sometime in the next week or so!
I would love some advice on a certain subject as things with the girls are changing and they are becoming more independent. We went to to playground the other day with one of our therapists to do a special make-up session at the park. While we were there I was watching Erin while our therapist had Abby. Abby wanted to go down the slide so I said sure let me catch her. I walked 5 feet to the bottom of the slide, caught abby, stood her up, and turned to check on Erin and she was gone. There was a level of panic that set in that I haven't felt before. It isn't like a typical child at the park when they run off and play, because you can always call them to come to you, they may not listen but most times they will at least respond. Well with the girls, since they are non-verbal, they don't come when I call when we are out like that. They don't yell or respond back to me. So when she went missing I couldn't call her. I just had to look. Luckily we found her, but in those 30 seconds it took abby to slide down the slide, Erin ran to the other side of the playground and was sitting in a little corner. All this being said I would love ideas on how to keep track of the girls when we are out. God forbid this situation ever were to happen again. Right now I can't take the girls to the playground by myself as it is, and even when I have another person it's hard. My best Idea has been to get apple air tags, and put them on their ankles. This way if i don't see them I can track them. I have never had an air tag, so if you have one I'd love it if you could tell me how well they work...this is something I have never had to think of before and now it's at the forefront of my mind.
As the girls get older, some things get easier and other things get harder. Yes, they learn new skills, and gain new independence but at the same time they are still so different than other children. Since we have been home from Philly I have made it a point to try and make friends, and do things, and go out with the girls. And man let me tell you, it is hard. We go on playdates with other families which is so fun, but also filled with anxiety and guilt. All the kids are playing and having fun, but the girls like to eat the grass, and don't actually play with the toys, and wander off, and don't understand. It is just a lot to try and "socialize" while at the same time trying to make it so that the girls have fun, stay safe, and don't make anyone "too" uncomfortable. I know I shouldn't worry about that, but I do. The girls don't understand personal space especially when it comes to other kids. They love to pull on tutu dresses and eat shoes (idk they're odd lol) they think hair bows are beautiful but don't understand to not pull them. And it is hard for me to be on top of them all the time. There are moments where I look around and see other moms enjoying themselves, sipping coffee and chatting while their kids run and play together making sweet memories. There is such a longing to be able to do that, but I have come to the realization that is just not how my mom life is going to be. And I have to be ok with that. The Lord gave these incredibly special little girls to me because He thought I would be the best mom for them, I just wish sometimes my journey of being a mom didn't involve so much sacrifice. I always wanted to take my kids to story time at the library, the fun workshops at lowes, the fun kids events at church, the easter egg hunts, the birthday parties, but our lives are just different. Yes, we CAN do all those things, but they aren't 100% enjoyable. They are hard, and filled with anxiety, guilt, frustration, and jealousy. We are only human, I am not perfect, and I may put a smile on and do my best to give my girls the best time when we are brave and do things, but man am I feeling all the emotions on the inside.
We love our girls and wouldn't change them for anything they are absolutely amazing. We just have some tough days, and I am sure that any other special needs parent, or regular parent can relate. Being a parent is a tough job, but there is nothing else like it out there. We are so lucky to have our miracles, and be able to feel those feelings because there are some parents who never got the change to feel all those things. So even though it is tough we are so incredibly grateful!!!
Time seems to be flying by! I am amazing to think that 3 months ago we were sitting in the hospital wondering when we were going to be headed home. Now we have been home for 2 months and the girls are doing amazing. Abby is getting closer to walking every day. Everyone is very hopeful that she will take her first steps very soon. She is cruising along furniture and is walking with her walker. Erin is walking up stairs, running around, and getting stronger everyday! They are both still working on their eating and speaking. We are working with an app on their Ipads to help them communicate. It is a little slow learning, but they are slowly getting better at it bit by bit. They both have been working hard on strengthening their weak sides. Abby has a weak left side and Erin has a weak right side. So they don't use those hands. But they work very hard in Occupational therapy every week to strengthen their weak hands.
Something I haven't really talked about much is how the girls have healed from surgery. Abby has healed wonderfully. Almost all of her stitches are gone and everything is healing beautifully. Her scars will easily be hidden by her hair once it grows all the way in. Erin on the other hand is a little bit of another story. i mentioned it a few times but never really elaborated, but Erin had a spot where her three incisions met on the top of her head, and unfortunately that spot opened back up, and hasn't healed. So right now she literally has a hole in her head. Everything else has healed up beautifully it is just this one spot that is about the size of a dime, maybe a little smaller. But it is an actual hole where you can see the implant. We do our best to keep it clean and help it heal, but we have been told it is very likely that it will not heal. So because of that we need to have an appointment in January-ish. At this appointment our plastic surgeon and Riley and I will have to make a decision on what to do since it cannot be left like it is. It is a constant infection risk, even though it isn't an incredibly high risk, it is still a risk. So we will have to decide on what to do to close that hole. Which is going to be some sort of surgery. We have been told there are most likely two options, neither of which we like, both are surgeries, but one is less than the other. So please be praying that this spot miraculously heals. These girls have surprised their doctors so many times, we are praying that this would just be another miracle to add to the list. We know our God is able, and we are praying that he shows himself in this small way. Everything in me wants to keep Erin from having to go back into surgery. But sometimes things are necessary and we need to do what is best for the girls and their health.
On a total different note I know a lot of you have read that the girls and I were in an accident on October 6th. We were on our way home from therapy and we were driving on the highway (like we do pretty much everyday) and we had driven through a little rain shower that had just ended. All of a sudden the car in front of me started to stop short, so I in return started to slow down as to not hit them. As soon as I started to slow down we were hit hard from behind. So hard that we in turn hit the car in front of us as well. Thank the Lord that the girls and I came out alright. I was hit right in the middle of the back of our van, if we had been hit off to one side at all we could have very well been spun and things could have been really bad since there were a lot of cars on the highway at that time. So much so that 3 cars behind the car that hit me also rear ended each other. The girls had some marks on their necks the next day from their car seat belts (thank the Lord for car seats!) but seemed to recover well. When you are in an accident with young children it is scary. Your first thoughts are not about you. You hear your children screaming and instantly pray that they're ok. Luckily the worst thing for them was being scared. Myself on the other hand is a bit of a different story. I ended up having a concussion from my head hitting the back of my seat. I had an instant headache the persisted on and off for about a week. The doctor also is sending me to physical therapy for my neck and shoulder. I thought it was something that would heal, but here we are weeks later and I am still incredibly sore. By the end of the day I am so so sore, and I usually have a headache from my neck being so tight. It's been tough. But since I am the only care taker of the girls during the day I have no choice but to lift, move, and pack things in the car no matter how I feel. So I start physical therapy in a little over a week, so please be praying that it helps and that my body can heal, even while being mama.
We also found out that our van has been totaled. We weren't expecting to have to buy a car right now so it's a little tough. We have been looking at bigger SUVs. The two vehicles that we were sandwiched between were both SUVs and neither one of them seemed to have any damage where as our minivan was totaled. So in the view of safety we have decided to look into getting an SUV, and SUVs are more expensive than we were expecting. But the girls deserve to be in a safe vehicle, especially since they will need to be in car seats longer and don't understand being safe while in the car. We are looking into SUVs with three rows so that we have enough room to fit the girls double stroller, as well as Abbys walker and all the other usual things (diaper bag, feeding supplies, emergency supplies etc). We also need to it to be roomy enough to hold all of our stuff when we make the trips back and forth to Philly. We would really love to get something a little newer so that it is reliable in that we won't be breaking down any time soon. Our minivan was a 2011 and was having quite a few issues as of late, so we are wanting to stay away from cars that are more than few years old. All these things combined equal a pretty expensive vehicle. But unfortunately it was what we need. So we are trying to figure out what type of payments we can afford with what our downpayment will be. So please pray that we find some type of amazing deal what will help us get into a safe reliable and spacious SUV. We have been driving a ford expedition as our rental and we are in love with it and are trying to find something similar but not as expensive. With the car market the way it is we need all the prayers we can get...it's a jungle out there ya'll!
Thank you so much for all of your prayers and well wishes since our accident! We are so appreciative of the love we receive from all of you. You all are truly the village that helps raise our children. Our girls are so lucky and blessed to have so many who love and care about them (and their parents). I know I can't respond to everything, but I do read all your comments and all your messages. They really do help us through some of the tough days, and we have been having a few lately. In the midst of all the car stuff we have been dealing with plans being thwarted because Abby got sick. Erin broke one of our friends glasses, and whenever we go out their yell and scream the whole time (not necessarily angry screaming, but just shrieking *insert eye roll*). Their special needs have just been in the forefront of our lives these days and it has been tough. Especially now that I am sore, every time I lift them it is very much in the front of my mind that I am having to carry 5 year olds everyday and that if they were typical I wouldn't be having to carry them out to the car and things like that. But even with all of these things, your encouragement and love helps us during some of those tough days.
This verse has stuck out to me recently and I want to share it with all of you...I love the way the message says it...
I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for. “When you call on me, when you come and pray to me, I’ll listen. “When you come looking for me, you’ll find me. “Yes, when you get serious about finding me and want it more than anything else, I’ll make sure you won’t be disappointed.” God’s Decree.
Time either seems to go incredibly slow, or incredibly fast. It never seems to move at a comfortable speed. My days right now are feeling like they are never ending, and the weeks seem to be flying by. It's so strange and uncomfortable. I always feel like time stands still and I am just trying to make it through the hour and then before I know it a week has flown by and nothing has gotten accomplished that I had planned on doing.
We have been home for a little over 3 weeks now. We have loved being able to see family again and be home with Riley. We have been to a few therapy evaluations and are in the process of waiting for insurance to clear everything so that we can go back. It's a long process that results in spending a lot of time waiting. It means that our days are not consisting of much and the girls get bored so easy. We are used to going somewhere or doing something at least 5 days out of the week, so having nothing planned for 6 of them is driving us all a little crazy.
Since we have been home the girls seem to be thriving. Erin just came off her antibiotic (finally!!) and is doing great. She had an incision on her head open up and leave basically a hole where you can see the skull implant. They were super worried about infection so she has been on lots and lots of antibiotics, but we were finally cleared for her to come off of them! Right now it is looking like we don't need to go up to Philly for about 5 more months which is awesome! As long as the girls stay on the path that they are on we are doing good!!! Erin's head is even healing better than they anticipated it. So please pray it keeps healing. They have prepared us that if it doesn't heal (which they are thinking it won't heal all the way) that Erin will need another surgery when we go back in 5 months time. We are praying that, that isn't the case and that this will heal up and that the implant won't get infected and we won't need to go through another (possibly the same) surgery for Erin. She already went through a lot with this past surgery and we really really don't want to do it again. I'm sure if she could talk she would tell you how much she doesn't want to go through it again. She still gets very upset when I mess with her head too much because she is afraid of it hurting.
But on the cognitive side of things it seems like the girls are exploding. It is amazing. They are so much more aware of EVERYTHING and they seem to understand a lot of what is being said and what is going on around them. We are just hoping and praying that one of these days they will start talking. We know that most of their doctors aren't surprised that they aren't talking. We were told that the parts of their brains that sustained the most injury during separation were the parts that affect talking and communication. When they were babies I wasn't too worried about this, but the older they get, the harder it gets. I know that in time they will figure out a way to communicate. But man it is so hard. Everyday they get a little more aware, and therefore a little more frustrated that I don't understand what they want or need in that moment. They respond when I ask questions, like you can tell if they want their sippy when I ask or if they want their diaper changed when I ask. But they can't come up to me and say mom I want my sippy, or I need my diaper changed. It makes things complicated and I am always asking a lot of questions. Now, I know that every child goes through a time like this when they are babies and learning to communicate and they eventually get through it. But we have been in this same stage for what seems like years. Yes, I know they get a little better everyday, but in all reality not much has changed in regards to communication when it comes to their response/initiation. It has really worn me out. Especially now when it is just the girls and I in the house all day every day and they get bored and cranky, and get into EVERYTHING! (not joking) I have gates up all over the house, two of which I have to climb over every time I want to go past them because they don't have doors. Which ends up in lots of tripping on my part. Both Riley and I have fell over them at least once. It's one of those things that I can't wait till we don't need them anymore! But they rip up books, eat cardboard books, Erin has started chewing on the molding around the windows in the play room, they rip things apart, pull hair out of dolls, chew stickers off of toys. It's exhausting. They are always doing something, and most times it's something that I have to stop. But it is all part of their development. The chewing is also a sensory issue that we are working on. I feel like my whole house has to be a chewy for them. They love their chewys but we never seem to have enough of them because I can never find them when I need them.
A lot of these things combined have given the girls the official diagnosis of being autistic. That diagnosis was one that I saw coming, but really was hoping wasn't. There is such a stigma around those who are autistic and it scares me for the girls' future. They already have so much going on and to be autistic as well is just hard. I cried a lot when I got that phone call. I just want the diagnosis' to stop. I know that it doesn't change anything. I know that the girls are still who they are and we still love them just as much if not more than we did yesterday. But having yet another diagnosis is just disheartening. We love these girls and want to give them absolutely everything in life. So it is hard to hear over and over again things that will hinder them leading a "normal" life (whatever that is these days).
Because of yet another diagnosis, and the fact that the girls are getting a little harder to do things with everyday (food shopping, going basically anywhere, getting the house cleaned, cooking) we are looking into finding some respite care. I have heard of CAP/C in NC but have no clue how to apply or anything like that and was wondering if anyone who reads this has this for their child and can tell me what it does, if it helps, and how to apply I would be so appreciative. It was so nice in Philly having my mom with me all day everyday, now that we are back home and it is just me (a lot of days Riley works from 9am-9pm or early afternoon till 9pm) so its been a lot. By the end of the day I am burnt out and exhausted. I just need some sort of help. A few hours a week for someone to come to the house and keep an eye on the girls while I get things done, go grocery shopping, and just get a few moments to myself that aren't between 8pm-7am. It's scary and hard to get to a point where you know you are needing some help. It is also incredibly humbling to say, yes even though I am their parent, I can't so this all by myself anymore. So please if anyone has any experience with respite work or even with having a CNA come a few hours a week (we don't need full blown nursing, just a little help from someone who can handle some medical issues) that can give me any advice I would SO appreciate it!!
Another thing that I am personally dealing with that I think a lot of "special needs moms" deal with is loneliness. Because the girls are hard to take out I don't go out often. Yes, I have friends who have children, but I am not able to hang out with them because the girls can't really go to other people's houses. They get into everything and destroy things. Even going to someone's house to go swimming is a huge task because the girls need to be contained the whole time, they don't understand to not fall in the pool, or not eat the grass or bite the table. I am not able to say "hey, lets meet up at chik-fil-a and let the kids play while we catch up". My life just doesn't work that way. And because of that a lot of friendships I have aren't as strong as they could be. It's very lonely. It's hard to always feel like a burden when you want to hang out with people because you know your children are "alot". Even when I go out with family I always feel bad because the girls are yelling and throwing things in the restaurant and causing a scene just by being their happy little selves. We don't get invited to many birthday parties, or kids events. The girl's struggle to keep "friends" because they get passed up developmentally really quick so we don't get to form relationships for them easily either. Please pray for me in this. I've been trying to figure out how to fix this for myself. I need that social aspect to my life back and it has been really tough without it. It's one of the things I am hoping and praying having some respite will help me get back (and Riley, his life basically consists of work and home)
We are so proud of the girls, and how far they have come, and where they are going. Not once have we wished things we different because we love our girls for just the way they are. So please don't think that this post means anything other than that we love our girls so much and just are wanting a little more support. Yes we are tired, yes we are worried and confused about some things, but we are also so proud and beaming about our children and how amazing they are and what miracles they are. We have been so blessed by them and by the community they having them has brought us. Those of you who read my blog and wait for updates and who are truly invested in our family. I wish I knew how to do video editing because I would love to make vlogs so you could really see the girls for all they are and all they do. I know my words can only show so much! We love our Delaney twins Community and have been so blessed by each and every one of you throughout this journey. We can't believe it's been more than 5 years since I started this blog. It has already been such a journey and we know it's no where near over and we are so grateful that you all are along for the ride!!
This journey is such a whirlwind. Never in my wildest dreams did I think that I first off have conjoined twins, but second that I would live the life of a medical mom. That I would be watching my children have several surgeries, undergo countless procedures, and be in the room from lots of CT scans. It was never something that even crossed my mind, but here we are. This is my life, and as hard as it is sometimes I wouldn't trade it for anything. It has taught me so much. It has made me a better person. As I sit here listening to the beeps and hustle of the ICU I'm reminded how blessed we are, even in the tough times.
For those who are just catching up, the girls had a major surgery on July 12th. They had something called a cranioplasty. The had an implant put into their heads to reshape and fix their skulls. The original plan was to have the girls have their surgery, spend one night in the ICU and then get transferred to the floor for maybe a weeks time. But before abby even left the OR things already got tricky. She had seized coming out of anesthesia (something they were prepared for given the surgery and her history). They gave her medication and got the seizure stopped. When she finally got up to the ICU she was pretty much still asleep. She was breathing on her own but wasn't responding to anything. After a few minutes she was transported down for a stat CT scan to make sure that everything was ok since she had a seizure. She was teetering on being stable the whole trip, they were arching her neck to help her breathe because she was so sleepy that her airways were getting floppy and not working well. When we got back to the ICU the decision was made to re-intubate her because they weren't sure why she was still so sleepy. They thought it could have been the medications she was given for the seizure but they shouldn't have lasted that long, or it could have been that she was seizing and we just couldn't see it. So to be safe they re-intubated and had her fresh out of surgery head hooked up to EEG. Mind you all this was happening while Erin was down in surgery. It was quite the whirlwind. It took Abby a few hours to finally show signs of waking up, and let me tell you those few hours were terrifying. On the outside I was cool, calm, and collected. But on the inside I was screaming and pleading with my baby to wake up. To have to call people to start prayer chains because your baby isn't waking up is gut wrenching, and something I don't wish on anyone EVER. Thankfully, she woke up and hasn't missed a beat since. She had a few hiccups with not being able to hold down anything for a few days (I don't think she got actual food in her belly that stayed there for about a week). Because of that we got yet another CT scan to make sure she wasn't vommiting from an issue there and she got x-rays to make sure nothing happened in her bowls. Everything was clear. So we are guessing it was one of the medications that she was on making her nauceous. Since she has come off all of the pain meds she has been tolerating her food great! She isn't at the speed we were when it comes to getting her food in her g-tube, but we will get there. If all goes according to plan she should be discharged tomorrow!!! She will go back to the farm with my mom and resume her outpatient therapies and appointments until we are ready to head home to NC. She is such a miracle. And I am the luckiest mama to have Abby be one of my babies. She is so fierce and strong. The things her little body has gone through in her very short 5 years is more than most go through in a life time, and she is still one of the happiest little girls I have ever met!!
Erin's surgery went fantastic. She came back to the ICU after awake and content on her pain medications. It took her a couple days to get back to her normal feeds but we got there. Because of Abbys shenanigans when she came out of surgery we were in the PICU I think it was three nights rather than one. Which wasn't terrible for throwing us off our initial "about a week" stay thoughts. But a couple days after Erin was sent down to the floor the drain in her head started leaking at the site. It started leaking a little bit and then over the course of about 24 hours she started leaking a lot. They would put gauze around it and it would completely fill the gauze within an hour or two. All of that leakage was CSF. When it started getting bad things happened pretty quick. A lumbar drain was mentioned one day and then within 24 hours she was scheduled to go to the OR to have one placed. What the lumbar drain does is help drain her CSF in a controlled manner so that he won't leak or pool in her head. So right now she still has the drain in her head, and the Lumbar drain. Getting the lumbar drain went well it was just that we had some tough times getting things "right". First the were draining too little every hour and CSF was pooling under her scalp. So they doubled how much they were draining, and that was too much and she got an awful spinal headache. Her heart rate shot up and was screaming she got sweaty and when the doctors sat her up she threw up all over. She got pain meds, an IV fluid bolus, and zofran, and slept for a good 4 hours and then was back to herself. So they went back down to what they originally were draining to keep her at baseline and then went up just a little and we found what seemed to be a happy spot. The fluid build up wasn't bad and she wasn't getting headaches, everything was good. The Erin, being the very busy child she is, broke the connector on her lumbar drain and was leaking CSF all over herself and her crib. Within minutes she was screaming from yet another headache, although this time she was having to be held down while they fixed the drain. It was truly awful, and it broke me. We have been through so much, but watching her screaming in pain, so much that her eyes were rolling was unbearable. She was clammy and pale. It was one of the worst things I have ever seen. That day I had to go down and just sit in my car away from everyone and just cry. I wasn't expecting all this, this go around. I was hoping for smooth in and out, but I should have known better. Since then things have been status quo. They drain Erin every hour, and he gets her hourly neuro checks. She is on her full feeds, and isn't needing any pain medication which is all AWESOME. The only problem is that every morning that is a nice pocket of fluid that builds up in her forehead. The drain in her head is supposed to take care of this, but it doesn't seem to be working, and as of tomorrow it will have been in for two weeks, which is too long. Tomorrow that drain will get pulled and we have to hope and pray that her body will start to take over and start pulling the CSF down to her lumbar drain and eventually stop producing so much. Her head needs to heal enough so that the CSF can't pool up there. If these things don't happen she will need to have another surgery to fix the leak that is happening. The thought of that makes me physically ill.
As of tomorrow we will have been here for two weeks. And at the moment we don't know when Erin will be discharged. She is in the ICU until her body can figure things out or until she has surgery. We are hoping and praying things heal up and start working. We so badly want to be home. We miss Riley, and our family and friends. We miss going to church on Sundays, and seeing all the girls' therapists during the week. Riley and I have tickets to go to a concert in the end of august as a "welcome home" date night. We haven't done a big date night like that in years, and now we are just hoping to be home in time to make it. Riley is also dying to have his family back. He is lonely and struggling, and it's easy to see why. I know things can change here in a matter of minutes, but that can go either way. So please keep praying. As much as Erin "looks" well, she isn't, and her body is struggling.
Another thing that happens tomorrow is hopefully Abby will get discharged!! This is wonderful for her to get out of the hospital and get back to her routine. The hard part about it is that siblings under the age of 12 are not allowed to visit. So it will be tricky, I will have to sneak away to see her during her therapy appointments. I will have never been apart from one of them for more than 24 hours before, so it is going to be a bit tough for me. But I am so so glad she will be getting back to normal, and am so so grateful that my mom is here and is able to take care of Abby just as good as I would.
You all have been so kind sending gifts and donations. We have been blown away by the love we have been shown. We weren't expecting to be "in" the hospital this long and things are expensive here. And you guys have sent my mom and I meals, and gift cards, and have kept us from having to stress about the money aspect of being inpatient. We are so grateful.
I heard a song today and God spoke to me through it. Some of the lyrics are as follows....
"yes he can" by CAIN
Sometimes those voices try to tell me
I’m forgotten, and I’ve fallen
Too far from His hands
But I know what kind of God He is
And I’m trusting in His promises
And I’m singing
Yes He can
Cause I’ve seen too much
Now I can’t deny
He’s come through
Every single time
From the beginning until the end
He did, He will, He can
So I am speaking that over our situation tonight, as tomorrow will bring new answers......HE DID, HE WILL, HE CAN
I am not going to lie, I have started and stopped writing this blog post a few times. It's been a long month with a lot of homesickness. Tomorrow will be the 3rd time I celebrate the 4th of July in Philly with the girls. The first was when I was pregnant, the second was a month after they were separated, and the third will be tomorrow. It's crazy how things happen. But it is time for an update!
This past month has felt like it has taken forever. A lot of hospital visits, a lot of appointments, a lot of planning, and a lot of driving. We are still at the hospital Tuesday-Friday every week. Most of those days are fairly early mornings. Out appointments usually start around 9 or 10..which doesn't sound early but when you are 45 min away and having to take into account the city traffic we try to leave an hour and 15 min before appointments. That way we arrive with 15 min to park get the girls out of the car check in (twice) and get to our waiting area in time to be called back. So those 9am appointments have us leaving by 7:45. And let me tell you, waking up two toddlers to get ready and get out the door is not very fun, especially when all you want to be doing is sleeping yourself. So we are all a bit tired by the end of the week. But we are able to "rest" on the weekends.....if there is such a thing as rest with these two little girls. They are all go until they crash at night. But we have been very blessed that the family we are staying with let us use their beautiful pool. Not only is this a great way to wear the girls out during the day, but it is so so good for them and their muscles. It's therapy that they don't even realize they are doing!! We've spent many hours floating around the pool. Abby is in love with the water and will stay in the pool the entire time that we are outside. We use the pool almost every day that the weather allows!!
The girls have been doing well in their therapies and a slowly but surely still progressing. The past two weeks have been a bit tough. I was sick for a little while at the beginning of the month which was really tough because I was here alone at that time. I eventually after two urgent care visits found out it was a weird bacterial infection I most likely picked up at the hospital (pretty much inevitable when you are at the hospital 4 weekdays a week) SO after two rounds of antibiotics I am finally back to healthy normal. During my first round of antibiotics my moms was able to come back, and she ended up getting sick with a nasty cold as soon as I started my second round of antibiotics. After two urgent visits for herself she was finally on the path to recovery and is still not 100% but almost there. Then about a week after my mom got sick Erin started getting sick and then two days ago Abby started. We've been living in a sea of tissues and vicks vapor rub. We are praying so hard that the girls are healthy enough for surgery on the 12th. This was not great timing but at least there was enough time for them to recover. Ultimately it will be up to anesthesia if they want to postpone surgery or not but we are praying we can go ahead with things as scheduled.
One of the worst things about everyone being sick and just not being home. When we aren't home no one sleeps as well or is as comfortable as they are when they're home. I ended up doing a week of appointments with the girls by myself but the girls therapists and doctors are wonderful and helped make everything work out. We had a few overlapping appointments because we were planning on having two adults present....but things don't always go according to plan.
One of those overlapping appointments was for Abby to get botox. The plan was for her to get botox injections in her arm and her leg. I know I don't talk about it very often but because of the damage that the girls' have as a result of separation, has left them almost like a stroke victim. They each have a weak side of their body. Erin uses her left side and her right side is weak, Abby uses her right side and her left side is weak. If you watch videos closely of Erin walking she has a little bit of a limp. And when you see them playing they always only use one hand and the other hand "assists". Abby has a harder time with her left side than Erin does with her right. Abby has a tight arm and usually has her hand in a bit of a fist...she has times where her hand is open, but her relaxed hand is almost always closed. She also is still when it comes to stretching her elbow out and getting her arm up in the air. Also when she stands without her braces her left foot is almost always pointed and very stiff. It is a bit of a struggle to get it into her brace and sometimes she even has some clonus in it. Because of that the girls rehab doctor recommended Abby get some botox injections to help relax those muscles. So she ended up getting 4 injections in her arm and two in her leg. It can take a week or two for things to start taking affect and it will really kick in within 4-6 weeks and can last a few months. We are hoping this helps!! The appointment wasn't fun for her or I but she made it through like a champ and stopped crying just a few minutes after it was done! Fingers crossed we get some good results!
If everything goes according to plan the girls will have surgery a week from Monday!! July 12th! This is a goal that we have had for a while but now that we are here I am so nervous!! I have total faith in our team. Our doctors and surgeons are AMAZING and we love them so much!! But this is a big surgery. For those who are playing catch up with our story, the girls right now don't have any bone on the top of their heads. It's like they have a very big soft spot like a baby. This surgery is going to fix that. Our doctors have had custom made implants made that will fix the big hole and protect their brain and give it a better, more normal, environment. It's a very big implant and there are always risks. There are risks of course of bleeding but the biggest risk is infection. Whenever there is an implant there is a risk of infection. The girls will come out of surgery fully shaved and also they will have some drains in. They will most likely spend a night in the Pediatric ICU and then get moved to the surgical floor that we had spent a lot of time on before and after separation. They will be in the hospital for about a week as long as there are no hiccups. Once they are discharged we will have to stay in the area for at least another 2 weeks. During those two weeks we are going to have to be very careful to prevent any infections. We most likely won't be going anywhere or doing much at all. There will be no more swimming for a while and no playing outside till everything is healed up really well. Going through all of this again makes my stomach turn. We had an appointment a week or two ago where I had to sign consent for everything and I had a hard time holding back tears as I walked to the car afterwards. The amount of stress and anxiety in making these huge decisions for your children is crazy. A lot of days I don't feel it right up front, but it comes out in weird ways. I am ALWAYS tired. I feel like I just can't ever get enough sleep. I get a short fuse some days and just want to explode. I caught a weird bacteria from the hospital most likely because my immune system is down from the stress. And of course I miss Riley so much it hurts. Like I literally can feel how much I miss him. It's a strange feeling when you want to leave so so badly, like every part of your being is telling you it's time to go, but you know you need to stay.
We are trying to come up with some fun things to do for their birthday because of course it lands during those few weeks post op where we won't be able to do much, so if you have ideas please let me know!! We are going to have a little cake for them with the other people who are around here at the farm and most likely do something once we are home. But we always like to try and make their actual birthday a special fun day for them. It's just another tough thing about being away from home that we aren't able to do things we normally do.
The homesickness is real. Between my mom and I we have enough homesickness for everyone! I know the girls must miss home and be confused if we are even ever going back or if this is their new home. We talk about going to home them but we never know how much they actually understand. I find myself getting angry and the stupid little things...like when I spill a drink, or the girls get into something they aren't supposed to. It is in those moments I am just angry that we are stuck dealing with all of this. I know God has a plan and he has been so good to us throughout the girls' lives, but I still have my off days, I'm still human. It's tough. So many people will tell me "oh you are so strong, I don't know how you do it" and I think to myself I'm not strong, a lot of the time I am kicking and screaming that I have to do it. I don't want to. But I do it because I have to. I do it because my kids need it. Riley stays home alone away from his family because he has to, not because he wants to. But we do it because we know it is the best thing for our girls. We know that this is the best place for them with the best care!
prayer requests -
-Surgery to go smoothly and NO INFECTIONS
-For Riley to have a safe trip up here for surgery
-For the homesickness to not be so present and for us to enjoy this time no matter how hard it is.
-For our finances (gas just keeps creeping up and is killing us with our 45min-hour each way commute to CHOP)
-For the time inpatient to go smoothly and that the girls handle the poking and prodding well
We hope and pray you all have a fun, safe, and Happy 4th of July (to those that live in the states)
We love you all and are so grateful for all that you have done to support us during this time!! There are several of you who consistently send things, send messages, and encourage us. We are so grateful for all of you and your prayers!! They say it takes a village, but for us it takes a family that is all over the world!!
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!!
Our time here is PA has been a whirlwind so far. We have been here a little over a week now. The girls have already had one surgery, and we are well on our way.
We have settled into our host home and love it here. It is so peaceful and the air is so fresh. There are all sorts of animals around and the girls love watching them. There is a big driveway that Abby can run around in when she is in her walker and a barn with all sorts of games and toys. We have been very blessed with our host family. They have truly been wonderful.
We got here a couple days before easter. It gave us enough time to settle in and go food shopping and get familiar with our lodging before the girls had their surgery. Then this past monday ( a week ago) the girls went in for surgery. We got to the hospital a little before 10am. Abby went back for surgery around 12 and then Erin went back around 1:30-2. They went through surgery great with no complications and no issues. Everything went smooth with very minimal blood loss. Everything just went as well as it could have. Then....all hell broke loose.....let me paint a picture for you....we are sitting in the room with erin waiting for her to be taken and waiting to hear when abby was back. Everything is nice and quiet. All the other kids who had come out of surgery were sleeping peacefully. Then a nurse came to our room and said "mom we need you". Which never means anything good.
As soon as I walked out of Erin's room I could hear her screaming. She was so so upset. (let me remind you everyone else around is is sleeping off anesthesia peacefully). Abby just wouldn't settle. Not only would she not settle but she would hold her breath and her O2 levels would drop to 70. She ended up getting several pain medications that did really nothing. They didn't settle her or knock her out, she just kept crying. She finally settled enough so that I could switch out with my mom (who I had sent to get food since we hadn't eaten yet that day) and run and get something to eat myself. I got back to Abbys room with just enough time to eat. She was finally settled enough but every few minutes she would sit straight up in bed and start screaming. She would cry for about a minute or two and then settle out again. It was this vicious cycle. Eventually she calmed down enough where she wasn't screaming. I was hoping and praying Erin would have an easier time. Within a few minutes of Abby settling I could hear erin coming....I looked out the door and didn't see anything and thought I was hearing things, and then 30 seconds later her bed rounded the corner and sure enough she was screaming.
She was a whole other kind of hysterical. She was screaming and thrashing and rolling around the bed (mind you she has several stitches in her head that were still slightly bleeding.) I instantly went to grab her and they were unhooking her IV and her leads trying to make it so she didn't tangle herself. I got her out of bed and it didn't help AT ALL. She was still thrashing and flinging her body and her head every direction. It was like she didn't even see that I was holding her or she just didn't care. I ended up trying to walk the halls with her but she kept doing the same thing...and remember we weren't the only ones there. All these other kids are in post op and are SLEEPING! I was worried, frustrated, scared, embarrassed, sweating, and I knew everyone was staring at the possessed child who just came out of surgery. We walked and we sat and we rocked and we swayed and nothing was helping. I did this for probably 15-20minutes which felt like an eternity. Literally she was screaming so hard she was getting hoarse. And then I lost it. This was my second round of screaming post-op child. I was exhausted physically and emotionally. And I was frustrated that nothing was helping. So the nurse sat me in a wheelchair, I held Erin, and she pushed us around the halls. It took another 15 minutes or so for her to finally settle out. It was rough. And we got several funny looks....but it worked thank the LORD! I was wheeled into the room Abby was in and just sat in the wheelchair and didn't move a muscle.
She slept for a little bit and would wake up and cry and then fall asleep again, and then wake up and cry. A couple hours went by and the nurse offered to take her for me so I could go to the bathroom and she told me to go get something to eat and take a minute. When I got back they had finally gotten us a room. We got to the room and had to switch out the beds for cribs which took a little while and all the while the girls just kept having crying spell. It was honestly exhausting. Finally around 10pm they both crashed. But in order to have that happen I had to sit outside the room because Erin would not settle unless she was on me. So my mom put her in bed and helped her calm down enough to fall asleep, but if I was in the room she would loose her mind until I held her...even if I was at the bed with her, it just didn't work. But finally around 10 they both fell asleep, we ate and then we went to sleep.
After talking to numerous nurses and doctors it was decided the girls experience emergence delirium. I grabbed this from a website to help explain.....Delirium and agitation can occur as a child awakens, or emerges, from anesthesia. Emergence delirium (ED) may be distressing to the patient, parents, and caregivers, and can result in inadvertent removal of intravenous (IV) catheters, drains, and dressings, and rarely, self-harm. ED is an altered state of consciousness, which begins with emergence from anesthesia and continues through the early recovery period. ED is a disturbance of awareness of, or attention to, the child's environment, and manifests as disorientation, hyperactive behavior, and hypersensitivity in the immediate period after anesthesia.
Next time the girls have surgery or any anesthesia this will be brought up and they have special medications for this. So fingers crossed things will be so much easier next time around. And we will make sure it is brought to everyones attention. I was not mentally prepared for any of that. I pride myself on being able to handle a lot because we have been through a lot. But for some reason this just broke me. I felt like it was one of my not so good moments. I was sweaty and crying and my mask was gross and I was just all over the place. Thank the Lord for amazing nurses who are there and willing to jump in and help and who do their very best to make you comfortable. They were all incredibly encouraging and did everyting they could for me as the girls' mom and for my mom as well. Which let me add in here my mom is such and MVP here. She jumps in when I can't. It is hard because I need to choose who needs me more at any given moment. But I'm not worried about those decisions because I know whoever doesn't have me has my mom. And the girls LOVE their Mimi. I am so lucky to have such an amazing support person with me. If I can't have Riley, having my mom is amazing. She is so good with the girls. She knows how to care for them and do everything with their g-tubes, she knows how to use their equipment, and she understand when the want something. I am just very blessed to have such an amazing mom be with me during these times. And sitting at the bedside of your crying granddaughter is not an easy thing. But she keeps her composure and calms them and in turn calms me and makes sure that I am ok as well. She's amazing.
The girls were discharged the next day and we have just been hanging at the farm. The days have been a little tough, the girls are off their normal schedule and have been sore. They've been cranky and clingy. And they don't go to sleep easy either. And Erin has this new thing with temper tantrums where she just screams. She doesn't cry...she just screams. And it's exhausting. But they are healing and getting better everyday. They will eventually settle into the new normal. We have gone for walks, played in the bath tub, let them run around outside, and today we went to an indoor soft playground. They just get bored easily so we are trying to keep them occupied. (side note : I would love it if anyone has any ideas for us on either things to do at "home" or places in the area that have fun things to do. We are near Newtown Square, PA.) It hasn't been the easiest but it is just one day at a time.
We don't have any appointments for a couple weeks now. The girls are just healing and recouping. Then we have an evaluation for therapies at the end of the month, and then they have a plastic surgery follow up and a 3d head CT scan the week after the therapy evaluation. As much as these days of having nothing to do can be tough I am trying to enjoy them as I know things are going to be busy before we know it.
We are so grateful for all the well wishes and encouragement and support during this time for us. It is hard to be away from the comforts of home and family. Even the little things like missing seeing the trees in our front yard bloom makes me a little sad. But is is one day at a time and I am so grateful for where we are and for all the support and for all the amazing people in our lives who help us here, and who are helping back home. We are in the process of writing this next chapter and we are so grateful for all of your participation in it!!!
I have had a lot of people ask what they can do to help, I am going to post our registry link, our venmo link (we also have paypal if thats preferred). Also if you would like to send Riley a dinner or a dinner gift card just send me a message on Facebook and I can help you do that. We love all of you and you have all been AMAZING!
It is official, the girls, my mom, and myself leave for Philly in two weeks!
We are well on our way with packing and planning.
After much debate we have decided to forgo staying at the Ronald McDonald house. We LOVE the Ronald McDonald house so much! Unfortunately with COVID their restrictions just weren't going to work for us. We needed something where we were able to have guests come back and forth and get the girls out a little bit. As much of a hard decision this was we decided it was in our families best interest.
Through many suggestions we contacted an organization called hosts for hospitals. This organization works with families in the community who live near the hospital who are able to open up their homes for families using the hospital to stay. Because of COVID things are a little different with their organization since they aren't able to place families directly in host families homes like they used to. So they have been working on finding us a private place to stay. We recently found out that we will be staying at a wonderful place. It is a working sheep farm outside of Philly with a private carriage house where we will be able to stay. It has a small kitchen and plenty of space for us to be comfortable for our 4 month stay. It also is farm so there will be animals for the girls to see and plenty of outside play space including a pool during the summer months. We are so grateful that this family has opened up their property to share with us. It really is an answer to prayer!
There is a $20 per night fee to stay with hosts for hospitals but a huge thanks to the Kelly Ann Dolan memorial fund who are going to cover that cost for us. Without them I don't know if our stay with hosts for hospitals would be possible. I am going to post a link to their website below so you can read about them and all the wonderful things they do!
We have had a lot of people ask what they can do to help with this trip and now that we know where we are staying we have a few ways you can help (please do not feel obligated in any way)
The place we are staying is 45 minutes away from the hospital. With therapies and appointments we could be traveling up to 5 times a week back and forth to the hospital which is a lot in gas that we weren't quite expecting. The other thing we weren't prepared for is paying for parking every time we go to the hospital. Granted hospital parking is on $4 per day but multiply that by 4 months and it adds up. Also at the Ronald McDonald House they always provided all the meals. Where we are staying that doesn't happen. We will need to food shop or use the hospital cafeteria which can become quite expensive and i don't know if we have an oven or not in our place. These are just a few main things that we could use help with. We have a wishlist with gift cards and other things that we could use for this trip on it as well. Our wishlist will be posted below. If you have any questions please let us know.
We are getting ready slowly but surely and enjoying every minute we can together as a family. Preparing to be away from Riley is so hard for me. When I think about it I get anxious pretty fast. I know we have done it before, but that doesn't make doing it again any easier. He is such an important part of our family and there is a huge hole when he isn't around, and I know the girls are going to miss their daddy so much! We are so grateful that my mom is able to come and stay with us in Philly periodically. I don't know what I would do without her. She will be coming with me up there to help with traveling and with the girls first surgery recovery. Then my best friend will be able to visit so often on the weekends as well to keep me company when my mom is back home. We also have a few friends in the area who I am hoping we are able to see. But none of that compares to having Riley. Please pray for us as we prepare for this transition. I know both my and Riley's anxiety is a little tough at the moment. We know this is something we have to do, but we wish we didn't have to.
Also if you could say a prayer that the girls insurance will cover out of state outpatient therapies for the girls. It is something that has been worked on and we are still waiting for the definite yes. It's really important for the girls to be able to receive therapies while we are away so they don't fall anymore behind. We are praying that everything works out and that the girls are able to receive all the therapies they are receiving now.
In other new Abby got her walker yesterday and loves it! As soon as she was put in it and it was sized correctly she walked away in it. It was actually very funny how fast she went. We are so grateful that it got here before we left. She will be able to cruise around with that thing and keep up with her sister! We are planning on leaving April 1st so we have a day or two to settle in before the girls have their first surgery. We will unfortunately be away for easter. We aren't sure what that is going to look like yet but we will figure out something special for the girls. Then the day after easter the girls will have their skin expander surgery. I will update as much as I can. So keep an eye out for those posts.
One of our amazing Delaney twin family members sent us this really neat bracelets called caring bands. They are bracelets that Riley and I will be wearing. They are a way to send encouragement. There is an app you can download (for free) and in that app you can send encouraging messages. Every time a message is sent to either of us our bracelet will vibrate to let us know someone is thinking of us. Once the girls are old enough we will pass them onto them, but for right now Riley and I will each have a profile. I will post all the information below and if you feel so led to download the app we would love to know when you are thinking of us, especially on the hard days. That little bit of encouragement goes a long way. And if you know of anyone who is going through a tough situation these are really cool little devices that give so much support!
We love you all so much and as we prepare to walk down this road a second time we can't help but think about how grateful we are for the love and support. Even just reading my blogs and sending a quick prayer for us is huge. We couldn't have made it this far without all of you!!
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!
It's taken me a minute to process a lot of what is going to be happening in the next coming months. Change is always so scary even when it is something you knew was going to be coming.
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!