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.
It has been a whirlwind since we came back from Philly. We got home a little less than a week before thanksgiving and now we are in full blown Christmas mode. But I am finally able to write about the trip to Philly.
Our first few days we had developmental appointments, which I wrote about in the previous post. We have thought and processed the diagnosis of Intellectually disabled and are taking it with a grain of salt. There aren't many doctors who take care of separated craniopagus twins. And even the ones that do know how different each and every case is. There is no one to compare them to. So we are just going to keep doing what we are doing. We are helping the girls shoot for the stars and loving them along the way. We are so proud of them and wouldn't change who they are. It was a diagnosis that kind of hit us out of left field but that seems to be the way things go with the girls.
After that appointment we had a few free days where I was able to see my best friend. It was so nice to take the girls to the aquarium (thanks the the Ronald McDonald House) and enjoy time with an amazing friend. We all miss "aunt" Jill and can't wait to see her again. But it did my heart good to be able to see her and have a fun day. My mom and I also took the girls to the Academy of natural sciences one day (again thanks to the Ronald McDonald House). It was nice to have those few days.
During those few days the girls ended up getting colds which made things with their impending CT scans a little tricky. We were originally going to get them done with just sedation and not need to have them go under anesthesia, but with their coughs and runny noses, they decided they'd rather them go under anesthesia to be on the safe side. But asked if we could come by and have them evaluated in person to be sure. When they were evaluated they gave me the option to give them a little bit of "giggle juice" and see if we could get the CT scans that way without all of the crazy of Anesthesia. I agreed and amazingly we got it done. Erin was great for hers, but Abby on the other hand needed a double dose and had to be swaddled and have a dvd player in front of her to get her to stay still for the 10 seconds it takes to get the scan done, BUT we got it done!!! Thank the Lord because I didn't want to have to go through it all again the next day but have to have them get anesthesia.
We also saw the girls neurologist who was very pleased with the girls progress. They are both fully off of all seizure medications!!! And neither one has had any indications of seizures since coming off. The only thing that has happened is that they have become brighter and reached some new milestones. We are hoping and praying it continues that way. The plan is to get the girls an EEG done in about six months at our next follow up just to make sure there is really no seizure activity going on. And then the next time they have to undergo anesthesia get an MRI done to see how things have been healing and get a good picture of what is really going on in their cute little heads.
We then went and saw the girls General surgeon who put their G-tubes in and helped a lot with the girls' reflux. We also see the girls nutritionist at that appointment. I was worried about this appointment because at the last one the girls hadn't gained any weight. So obviously I would be nervous about the girls gaining weight at this list as well. But we have been working very hard annnnnnnnnd Erin gain an entire kilo in 6 months (2.2lbs!) and Abby also gained weight (but not as much as Erin although that's fine because she has been heavier than Erin for a while now). They said for the first time the girls are almost on the exact same spot on the growth chart!! We were thrilled and they told me to not change a thing and keep doing what we have been doing. They also were encouraged to hear that Erin has been eating. We are getting ready to start keeping track of what she is eating during the day to see how many calories she is starting to take in. We aren't able to ease up on the blenderized feeds but that is what we are working towards! Abby is also very interested in food and likes to munch on things, but she doesn't seem to actually eat very much. She is getting there and will be catching up to Erin in no time.
And last but most definitely not least we saw the girls' plastic and neurosurgeons. They both were so excited to see the girls. We see them at the same appointment. We finally have plans for the girls reconstructive surgery. It will most likely take place around May of 2021, but we will be up there in March till surgery because the girls will each need a skin expander placed. This will allow the skin to stretch (again) but this time it will be to help fix their hairlines and get rid of all the bald spots that they have. This was a decision we made because we know when the girls are 15 they will be have we had all that fixed for them and not having to worry about it then. So altogether we are looking at being in Philly for around 4 months. Most of that time will be outpatient since they don't need to be inpatient to get the expanders filled. But we don't want to go home with skin expanders in fear of something happening and being too far away. So we will be at the Ronald McDonald house (fingers crossed). We are going to see if we can work out having the girls get therapy while we are up there as well as to not regress in all the progress we have made. That will most likely be a battle with insurance but we are going to work hard to get it!
So all in all our Philly trip went well. Unfortunately the girls came home with colds and rashes. But the colds have now gone and we are just dealing with the rash on their bellies ( which I have started to get now go figure) so pray that it all goes away. We will most likely all be headed to the doctors on Monday.
We are also in full holiday mode. We are ready to do all the fun light events, bake cookies, and sing Christmas music all day long. If you think of it say a little prayer for me. The holidays are always a little bitter sweet for me. Mind you I know you all know but I love my girls and wouldn't change a thing about them. But it's hard shopping for the same age toys that we have been shopping for, for the past 3 years. I can't wait for the year that they start to understand Santa and Christmas and all the joy that comes with it, but this year isn't that year. They love the lights and know everyone is happy, but I know they don't understand it. Christmas is my absolute favorite holiday and I have dreamed of having my own kids run out of their bedrooms Christmas morning and tear into their presents. Hopefully next year we are closer to that. But its bitter sweet knowing that if they were typical they would really be understanding Christmas and Santa this year. We will still enjoy the holidays and all the joy and love that comes with it. And we will pray and hope that each year the girls understand a little more.
We are so grateful for each and every one of you who prays for us and encourages us. It means the world to us! And a big thank you to those who send us wishlist items. They are helping a lot with Christmas for the girls. It takes a lot of pressure off us financially that you all help as much as you do. We are very blessed and humbled by it!
wellSo as you all know we have been in Philly for about the past week. We have had a few appointments so far and have moved a few things around. We still have to see our neurologist, general surgeon, nutritionist, plastic surgeon, neurosurgeon, and ophthalmologist. We also have to get CT scans done.
Please say a prayer that the insurance goes through for the CT scans. We have been battling them for the CT scans for some reason. We pushed the appointment back as far as we could to give it more time to try and go through. So we are crossing our fingers and toes and praying that we are able to get it done. We have that appointment on Tuesday. Im actually really excited to see how things have been healing. We haven't had a CT scan done in about a year now.
As far as the appointments we have had so far things have been going ok. We saw a rehab doctor for follow up and he was happy with how the girls are doing. He has no real concerns right now, just to keep doing what we are doing.
We also had some appointments that are part of a neonatal follow up program. Those appointments are to look at overall development to make sure we are getting all the services we need. After seeing a medical doctor, a physical therapist, and a developmental psychologist the girls received a new diagnosis. We unfortunately haven't had one of these appointments in about 18 months. Which actually turned out to be a good thing because it would really be able to show how much they have developed since then. And after talking with the psychologist I came to find out they haven't developed much. They have made advances mostly in gross motor skills, then fine motor skills, and as far as speech they haven't really changed much.
Being a parent you always tend to look at the best in your child. You give them the benefit of the doubt. So in the day to day we celebrate the tiniest of milestone. Every new skill we take pictures and tell all the family and it is a big celebration. What I hadn't realized is that besides crawling and pulling to stand not much has changed.
The girls are still developing but it is taking a lot longer than we were hoping. Our hope was that by the age of 5 they would have mostly caught up. Maybe that was a lofty goal but it was something we thought might be achievable. We always knew that things could be different, but the girls just seem so "normal" to us in so many ways that we never really let ourselves think that they wouldn't.
But after this appointment we have a new diagnosis for the girls. They are now considered to be intellectually disabled. "Intellectual disability (ID), once called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. People with intellectual disabilities can and do learn new skills, but they learn them more slowly. "
This is one that hit us hard. We were told that the girls most likely will never actually catch up. And that we will most likely be caring for them well into their adult lives. They're taking years to do things that takes "typical kids" only a month or so. So the thought of the future is a scary thing and we really don't know what it is going to look like. We have also always wanted to have more kids but now I wonder if we would be able to handle it. We are still so hopeful. So hopeful that the girls will eventually catch up and that they will keep learning and developing, but we got a hefty dose of reality. It's one thing when they are little like this, but they are already heavy carrying everywhere, we struggle with the correct equipment to get them around it, and we miss out on a lot of things because it is harder to go and do things than it is to stay home. The thought that this could be the rest of our lives is terrifying. So please pray for us as we process this information. We still want to talk to our other doctors and get their opinions on the matter as well according to what their brains look like at the moment. We've just always had a lot of hope for how far the girls could go, and not that we don't have hope anymore, we just are trying to process the thought of what we were hoping for not coming true. We know God has a plan and always has had a plan throughout all of this. And we cling to that with every part of our being, but it's so hard when everything in you wants to just run (not that we ever would, it's just that fight or flight thing, and I'm feeling a little tired of fighting. I can't speak for Riley but I am pretty sure he is right there with me). We love our girls more than we ever thought possible and just want them to have the best life and experience all the good things life has to offer.
So please just pray for us moving forward and processing this. We also need to go through and see what this diagnosis does as far as services the girls can receive and everything that comes along with it. We've been told there is nothing "more" that we should be doing regarding the girls therapies and schooling which is also tough to think there is nothing I can do to help them more. But we are just going to keep moving forward, keep celebrating the small things, and just take it one step at a time into the unknown.
We love you all so much and are so grateful for all the prayers, gifts, and words of encouragement. There are tough days like this where your encouragement helps push us through.
I can't believe we are already into November. Where does the time go! Before we know it we will be through Thanksgiving and onto Christmas (which is my favorite holiday).
We are all doing well here in the Delaney house. The girls keep growing. They finally seem to be gaining weight at least a little bit. I am hoping that it keeps that trend since it's been such a battle. Abby crawled for the first time a couple weeks ago. Just a couple strides but even so we count it as her first crawl. She's been doing it fairly often and we only hope she gets better and better at it! She has also been pulling up to her tall knees and trying to grab things off the ottoman which is a new skill as well! Erin is still walking along all the furniture and her play yard. She actually walked pretty far in her gait trainer the other day at therapy. The furthest she has ever gone in the gait trainer without help! We were all pretty excited. She for some reason is taking a little while to figure out how the gait trainer works. It's hard because we know she can do it because she walks along all the furniture all the time. But we know she will eventually get it and be cruising in no time. *edit* So I wrote all this, this morning and this afternoon at therapy Erin took off!! She walked all over the therapy building, up and down hallways, through the waiting room, and did laps in the gym! Everyone was so excited and almost in tears! I will be posting a video soon!!!
In other news we leave for Philly on Saturday. My mom is coming with me to help out since Riley will be home working. We are always excited to see everyone and show everyone how the girls are doing, but we don't look forward to the long drive. As the girls get older the drive gets a little harder each time. And recently Erin has been getting antsy in the car if we are in it longer than an hour or so. So I am a little nervous but hopefully she hangs in there. We will be bringing lots of toys and movies to keep her occupied.
As always please say a prayer that we get into the Ronald McDonald house. We have gotten in every time thus far but there is always a chance that they are full. If they are full I am not sure what we will do since hotels in the area are more expensive than we can afford. It's always nerve wracking waiting to hear if they have a room for so we just keep praying they do!
Also if you could say a prayer for our car situations. We aren't going to be taking our car to Philly this time. My mom has graciously offered to take hers. My car as of recently has cost a crazy amount of money to get fixed, and it still has the check engine light on. We didn't know that the car would have all of these issues and that the restricted title would cause us lots of hassles when it came to recall type stuff that we have now had to pay out of pocket when the company was supposed to cover the costs. My dad has been working tirelessly on my car (thank the Lord because it's been in the shop 4 times and cost a ton of money) but it still has some issues. So since my car is past inspection, and not able to be inspected before we leave, we aren't taking it. We also are down to one care. Riley no longer has a car since his died and was going to be too much to fix for its age. So we are trying to figure out what to do to get him a car since we weren't planning on getting any new cars for a while. It's pretty much a disaster at the moment so please pray that things smooth out and we are able to get all the issues with my car fixed, and are able to get another vehicle somehow.
In a totally new topic, I've been thinking a lot about self care. It is something I see a lot of articles about as i scroll through my special needs parents face book pages. They all say that if you don't practice self care that you won't be able to keep caring for your children because you will burn out. I can see this point of view, I really can, but from my point of view sometimes self care is just really hard. By the end of the day I don't want to go for a walk, or read a book. I was to binge watch Netflix and eat snacks and fall asleep. But recently I have been realizing that I need to fix some things.
I have never been the skinnies girl. Even as a teenager I struggled with my weight. It's just always been an issue. When I was pregnant with the girls I actually lost 12lbs in my first trimester because I was eating healthy. I was really healthy throughout my pregnancy and after I had the girls I weighed less than I did when I first got pregnant. Then enter stress eating. While the girls were in the hospital the one thing that made me feel happy and relaxed was eating. Especially at the Ronald McDonald house. They always had delicious comfort food, and lots of snacks and desserts, that combined with eating greasy food from the hospital cafeteria every day I gained a lot of weight. Unfortunately those habits followed me home and I am paying the price for it. I weigh more than I have ever weighed in my entire life and I hate it.
So after talking with my husband and some other family members I decided to do something for myself. I joined weight watchers. It has been so hard, but I finally feel like I am doing something for myself. This is something I have control over. I don't have to eat when I'm stressed, or happy. I can take those emotions for what they are and move on. I realized I haven't really done much for myself since the girls came. Life has been about making sure they had an advocate in the hospital, making sure they're getting everything they need at home, and making sure they are happy and healthy. It's been a huge priority. Thats basically our life, making sure the girls' are good. But now that they are doing well and we are on a good path, it is time to do something for myself. In the past two weeks I have lost just shy of 10lbs! It's not much but it is a huge deal for me since I haven't done anything but gain since the girls were born. This is something that will not only benefit me, but my whole family. I realized how tired I always was and how burnt out I was feeling. And even though this is hard it is so rewarding. I want you to know that you can do it too. Whatever it is that you have been wanting to do for yourself do it. You won't regret it!
Sometimes what we need is parents is to focus on ourselves once in a while and it gives you a renewed self. It's hard having children with specials needs. It takes up your entire life. You can't live like a typical family and the days can get really dark and hard if you aren't careful. So take a few minutes, I know you're tired, I still am tired, but i promise you'll be happier.
We love you all so much and are so grateful for your encouragement and love! We love the Delaney twins family! It's such an encouragement to see comments, and receive cards, and messages. We wouldn't be able to do this on our own! They say it takes a village, but we have a village that spans the world!!!
It's finally beginning to look like fall here in the south. The heat is still here, unfortunately, but the leaves are starting to fall and the days are getting shorter. It's amazing to think that in about 2 months we will have been home for 2 years. It's amazing how much has changed and how much is still changing and has yet to change.
Grief is a funny thing...I always used to think that people only experienced grief when they lost someone. (very naive I know). It wasn't until Riley and I had the girls that I learned what grief really is.
I was very lucky growing up and never really had to experience real grief. Granted I lost my one grandfather at a young age, but was too young to really understand grief. Now I experience waves of grief just as anyone who has lost someone important to them. It's these waves that seem to wash over you.
Don't get me wrong here, loosing someone is very different than having children with medical complexities, and I don't want to make it seem like these two are similar because they aren't. But the way grief works is the same.
Ever since we found out about the girls Riley and I have had to grieve. We grieve the life that we had dreamed about when we got married. Most young couples dream of having a family when they get married. They can envision their kids running around the back yard, splashing in the tub, and opening presents Christmas morning. You have this whole life built up in your head of what life could be. But with Riley and I our dreams changed. They changed in an instant. The second we saw the girls on the ultrasound monitor with both knew that the life we were living was going to be very different than the life that we had envisioned.
So why am I bringing this up. Why when the girls are 3 years old am I bringing this up. Well today my mom had offered to watch the girls for the day so that we could have a little break since Erin has been having some issues with puking at night and we haven't been sleeping well. So I dropped them off with her and went out for a little while by myself since I don't get to do that very often. It was so nice to go from store to store and not have to lug everything and everyone in and out of the car over and over again. I went to party city to get some things for my sisters bridal shower that was coming up. I was having a nice time and my spirits were up and I was just enjoying a little freedom from mom-hood for the afternoon. While I was waiting in line, there was a woman who was checking out and she had her daughter with her. She was bopping around, asking questions, and trying to get her mom candy. I smiled as I watched her little happy self enjoying life. The mom was talking with the cashier as she was being checked out when she was asked how old her daughter was. She then asked her daughter "how old are you" to which she replied "3".
In that moment my heart sunk and my throat tightened and I could feel tears welling up in my eyes. I had to remind myself where I was and that people were going to think I was a little crazy for randomly getting sad in party city. But I realized what typical 3 looks like. It's a mini teenage basically. Speaking full sentences, listening, understanding, potty trained, basically a kid. 3 seems to be the end of toddlerhood. In the back of my head I know this. I know what 3 looks like. But for some reason it hit me funny as I watched this happy little girl. I know our girls are happy. I know they aren't a typical 3 year old, but they don't know any different. They just know what they know and live life the way they see it. But Riley and myself live a little differently. We live with knowing what could have been. Knowing what the girls are missing out on, even what we are missing out on. The girls are always progressing, but it's slow. Developmentally they aren't even 1 year olds yet, even though they are in 2t clothes and 3 years old.
All this come back to the fact that grief if a funny thing. Some days I don't even think about the fact that the girls are different. I don't think about the things we are missing out on or the things that are different for our family. I don't think about the struggles we face as a family from being away from each other so long and all the financial stresses we are under from having a few years struggle. But then there are days when the grief comes back. Where I wonder what life would have looked like if the girls hadn't been conjoined. What if they had been born like typical twins. Our babies would be kids right now. It's a tough pill to swallow.
After a little while the grief of this afternoon wore off. Riley and I went out for dinner to have a little date since we haven't done that in a little while. We were able to go to a nice restaurant and be just the two of us for a little bit. And then we got a phone call from my mom that Erin was sick and throwing up and acting really lethargic. Instantly medical mom turned back on and we got the check quickly and left. It wasn't till I put her to bed and sat down in the quiet living room that the grief I had felt earlier in the day came screaming back. If Erin was "typical" throwing up and acting lethargic wouldn't be a cause for alarm. But since she has a g-tube and can possibly have seizures etc it causes alarms to go off in my head. She's also been acting a little funny the past few days which just has me on high alert as well. Nothing I can really pinpoint, but a mama just knows these things. If all these "other" things weren't at play the night may have gone a little differently (at no fault of my parents either, Erin needed to go home). But even so it's that grief that seems to creep in when you least expect it.
I know all my other medical mom friends feel it too. It seems to crush you when you least expect it. Like getting the wind knocked out of you and you can't breathe. There is a part of you that wishes you could run away from it all. Run away from the doctor appointments, the therapy appointments, the always trying to get them to gain weight, the anxiety, the worry, the am I doing everything I can for them. You just wish that sometimes your life was "typical". That your kids were "typical". And the weirdest thing about this type of grief is that you wouldn't change it. You wouldn't change your child for anything. The milestones mean so much more, the smiles mean so much more, even the middle of the night snuggles mean more. It's the repetitive cycle that just seems to happen over and over and over again. It's hard to not feel guilty when you feel this grief either because you never want your child to think you wanted them to be anyone other than who they are. It's just that you seem to grieve for your child and for the things that they don't understand or realize.
So all this to say, today was one of those knock the wind out of you kind of days for me. The funny thing is that no one knows it either. And again I know my medical mom friends are the same way. We feel this incredible grief, but don't show it. We put on our brave face and push through because our kids are worth it, the grief is worth it. We push forward and know tomorrow is another day with new triumphs to be had.
Also please know how grateful we are to those who have sent wishlist items and donated to our gofund me. Words cannot describe how grateful we are for those things. They brighten our day and take some of the stress off. The amount of love and prayers that you all show us is incredible. We are so so grateful.
I am so sorry that I haven't been able to update everyone lately. Life has been crazy. Between going to Philly, coming back, the girls getting sick again, and then moving its a constant whirlwind of activity. So here we go..the most recent update!!
Philly was, as always, wonderful. We ended up seeing our neurologist, plastic surgeon, neurosurgeon, general surgeon, nutritionist, and the feeding clinic. We also were able to attend the fetal reunion which was so nice!
The fetal reunion is held at CHOP every year for families who have had children in the Special delivery unit at CHOP and used the center for fetal diagnosis and treatment. It's an incredibly special day because everyone around you has gone through those gut wrenching emotions when you find out something is wrong with your unborn child. It's emotional to watch the slideshow they do every year, where you get to see all these amazing smiling faces. Perfect little miracles who all were helped by these amazing doctors and nurses and staff at CHOP. I got to meet people that I have only met on Facebook which is always fun. I got to hang out with two other families of conjoined twins and see how well they're all doing (one of which is in college to become a surgeon...just saying!!) It's those types of days that you need to have once in a while. A day filled with encouragement and hope. Where you can see "look they did it" and realize "my kids can do it too". We also got to see and hug some very special people who were around when I gave birth to the girls. The nurses who cared for me while I was on bedrest and in labor with the girls. The doctor who actually delivered the girls was also there. It really was so special to see them all and have them see how well the girls are doing!
We also were able to stay are the Philadelphia Ronald McDonald House. When I first started my stay at the PRMH I was an emotional wreck. I had just had a c-section, I wasn't able to be with my babies all the time, and I was trying to figure out how to be a mom. It was a place that I didn't want to have to be in. But after a little while I grew to absolutely love that place. It was truly my home. I made friends with staff and volunteers, and the other families I met while I was there are now friends that I will have for the rest of my life. One special thing that happened while I was staying there was that they broke ground for a new wing. They had plans to build an incredible 8 story building off of the main house that could house many more families who had children in the hospital. When it happened I remember thinking "wow won't it be so cool to be able to come back here when everything is done and have the girls with us to enjoy it". It was almost a dream. Well this past visit my dream came true. We were able to stay in the new and improved PRMH. And let me tell you, if you have ever donated the The Ronald McDonald house charities....THANK YOU! This building is incredible. Everything is state of the art and made so that you have the most comfortable stay you can have. Each room is more like a suite that almost feels like an apartment. And somehow even with all the space and new things it still feels like home. It is still one of the most welcoming places I have ever been. Where the smiles that greet you give you hope for your children. The staff and volunteers that work there are inspirations because I can tell you, parents of medically complex children are not always easy, we can be pretty darn tough to deal with sometimes. But they have always been so incredibly accommodating and do whatever they can in their power to get you what you need so that you can care for your child the best that you can. It really is the only other place like home!!!
We had lots of good news during this past trip. We saw our neurologist who was so happy with the recent gains the girls have made that he decided to start weaning the girls off their seizure medications!! The girls just this past week totally came off their topamax!!! Which for one is amazing because it was expensive every month, but for two has just made them so much brighter!!! If anyone has been on any type of seizure medication you can attest to the fact that most times when you start it, it makes you very drowsy and sleepy and you need to let your body get used to it to be able to function again. These little girls were basically snowed out cold from their seizure meds for a good week when they were first started on these medications. So now as we are coming off them it just seems like the light in them is so much brighter. Erin is on a new level. That little girl gets into EVERYTHING! She is also pulling up to standing now and because of that she is really into everything. And she is fast, like super speed when it comes to crawling. So she just seems to be blooming before our very eyes and I really think it is because of the weaning off of her seizure medications. This was the only one left for her so now that she is seizure medication free I feel like her little brain is free to make so many new connections and we are loving watching it happen! And Abby is also seeming so much brighter. Her cognitive skills seems to have changed over night. She has always been such a sweet and sassy little girl but she is also so sensitive now. She gets so happy and giggly and smily, but when someone is upset or tells her or Erin no she is so sad. It's so sweet to see her understanding these emotions when she didn't show them as much before. She also has been reaching to be picked up more and is scooting herself around and sitting up and exploring in her own little way and it's just such a miracle! Abby has one more seizure medication to be weaned off of but we will hopefully be doing that as soon as she has been off this one for a little bit. We need to give her body a little time to adjust before changing it up again. But weaning off medications has been such and answer to prayer. We didn't know if these medications were something that the girls were going to have to be on for the rest of there lives, but just two years after surgery and they are already barely on any medications anymore! God is good!!
We also got to see our different surgeons who were, as always, amazed to see all the progress these little girls are making. We love seeing them and being able to show off the girls to them. They were the ones that gave the girls are real chance at life. A chance beyond basically living in a bed because of the way they were conjoined. They didn't just save the girls lives, they saved their lifetimes and we are so so grateful to all they have done for our family. We talked about the future and what their plans are moving forward with the girls regarding reconstructive surgeries and things of that nature. We decided to wait a bit longer before anything is done. They're doing so well right now that they don't feel the need to work on anything at this moment in time. (which is a relief for this mama who is not ready for her babies to be back in the hospital for a while).
We saw our general surgeon and nutritionist as well. This was an important appointment because the girls have not been gaining weight as well as everyone would like. The have been getting sick so often that every time they gain any bit of weight they get sick and loose it. Being g-tube kids, they are a lot more apt to throwing up when they are sick, even if it is just a cold. Meaning they get a lot of fluid when they are sick but not many good calories, therefore having them loose weight. It's a constant battle to keep them healthy and keep weight on them. So we tweaked some things and are working hard on getting some weight on these monkeys who never stop moving. So please keep that in your prayers. Its a tough spot to be in because most people when their kids don't gain weight are worried about having to get a feeding tube, but we already have a feeding tube and can't seem to gain weight so its a little more serious in our case. So hopefully the girls start gaining lots of weight and stay healthy over the summer!
Then we had our feeding clinic evaluation. This appointment was a little different than the others in which I kinda felt like a failure. First off the girls weren't accepted to the program. We were told that they have the skills needed to eat and that it is because I am not working enough with them so they are not using those skills. That its more of a behavioral issue than anything else. This was a huge blow because it is the one thing that I struggle with when it comes to the girls. I worry a lot about their eating. And to hear those things (which are very contradictory to our therapists takes) was tough. But we take everything with a grain of salt and keep doing what we believe is best for our children. And that is all I will say about that. Needless to say it wasn't a great appointment.
Now since we have been home things have been crazy. Abby got sick and ended up in the ER for what turned out to be a sunburn that we didn't realize she got. (two random square shapes on her back that must have gotten sun while at the pool). She came down with a high fever and when we stripped her down we noticed what we thought was some weird rash or something. So we took her to urgent care (it was a weekend of course). Urgent care had no idea what was going on and because of her medical history sent us to the Emergency room. Only to be told the fever and marks on her back weren't related. So after much deliberation we figured it had to be a sunburn from being at the pool. Since then her fever went away a few days later, and her sunburn is now two little tan patches on her back. Needless to say we are way more careful with making sure that every inch of the girls has lotion when we are out in the sun. (we weren't used to two piece bathing suits....lesson learned)
Then after Abby got better we ran into a house near my parents that was up for rent. I really believe it was a God thing because it almost just fell into our laps. My sister noticed the sign, and her and my mom called. It just so happened the realtor was at the house and told them they could come over that afternoon. They called me and I reluctantly went because I didn't think there was a way that we could move. But I went and fell in love with the house. Hard wood floors in the living areas, fluffy carpet in the bedrooms, a beautiful kitchen, fenced in back yard, and 1600sq ft! I was blown away by how perfect it was. And did I mention it is also a ranch! While walking around my parents were talking with the realtor and talking about the girls and telling him a bit of our story. The girls just melted his heart and the next day I got the phone call that we were the family they wanted to rent the house out to. To put the cherry on top, the rent is cheaper than what we were paying month to month at our town home!!! I'm telling y'all, I was feeling so defeated when it came to moving. I didn't think it was every going to happen, but it did AND without tax returns (that's a whole other issue....ugh). God always has his timing for everything and this was a perfect example of that. So we just moved into our new home just a few days ago. And we are loving it. The girls get to use their gait trainers now and work on their walking (which they couldn't do in our town home). We have more space, and extra bedroom, and finally feel like we can breathe a bit since we aren't so cramped. And as I said earlier in this post...God is good!!!
We have also decided that we are going to have the girls start preschool in the fall! This won't take away any therapy time since they'll have two days a week that they won't have therapy (since they are aging out of early intervention). So it works out perfectly that on the days they don't have therapy they get to go to preschool for a couple hours. We really think that have that time spent with other children their age will help their speech. Their talking seems to have been on the back burner so we are praying that being around a bunch of other kids will help the start to talk. We are excited and nervous all at the same time. But the school is wonderful and so are the teachers and staff. Our IEP meeting went great and everyone was encouraging and kind and you could tell they really wanted to girls to be there and really thought it would be good for them.
Thank you all for the prayers and encouragement you always send our way! We couldn't do this journey without all those who truly support us. I was just thinking about it the other day that it is amazing how many wonderful strangers are out there. It is amazing how people who have never even met us can be so kind and encouraging. We are so blessed to have you all follow our family and watch our girls grow with us. They truly are a miracle that unfolds each and every day!!
By the way....can y'all believe the girls will be THREE this month!!!! When did that happen!?!?!?!?
I've always knew I wanted to be a mom. Even when I was a little girl my favorite thing to do was play with my dolls. But man I had no idea the amount of mental fortitude it would take actually being a mom.
The Friday before mothers day the girls were acting a little funny. Abby was cranky and clingy and I thought she might be getting sick. Then on Saturday they seemed to be pretty normal so we went about our Mother's Day plans on Sunday. Well towards the second half of the day they both became super cranky (Erin more than abby) and very clingy. By Sunday night Erin had a 103 fever and was completely miserable. Fast forward a week and a day and that brings us to today. Abby is stuffy and cranky and will get a slight fever every now and again. Erin on the other hand is very stuffy, runny, and has a nasty nasty cough. She also keeps running a decent fever every now and then, and you can tell when the fever comes back. Her eyes get dark rings around them, she gets really upset and tired, her nose starts running, and her cough gets pretty constant. It's been exhausting dealing with this for over a week now. We went to the doctor for a second time yesterday and ended up getting some chest X-rays for Erin just to be safe. Her cough has been the main worry for me. She doesn't sleep well and our nights are spent in steamy bathrooms or next to the nebulizer. So we thought the X-ray was a good idea. It came back clear which is good news, but not good news in that there isn't something to "treat". The doctor thinks that she has adenovirus which seems to be making the rounds right now. Adenovirus is a common viruses that infects the lining of your eyes, airways and lungs, intestines, urinary tract, and nervous system. They're common causes of fever, coughs, sore throats, diarrhea, and pink eye. Which makes a lot of sense since I was wondering why their eyes have been kind goopy, not pink eye goopy but more watery and crusty than usual. So unfortunately it is just a waiting game till everything gets better.
This is one of the worst things because you cannot do anything to help them except Tylenol and cuddles, and they're still miserable most of the time. Erin wants to be held almost 100% of the time. And it isn't just being held, it's like holding a restless worm that wants to burrow into you haha. She is a super snuggler and just wants to snuggle as hard as she can. I know it is so hard on them (especially Erin who seems to have it much worse) but the emotional exhaustion I feel is crazy. I have felt this way with other sicknesses they get but this has been the longest sickness they've had thus far, and the most sleepless. So besides just being tired, I'm just drained. But being a mom gives you super strength. The love you feel for your children seems to somehow propel you through any type of exhaustion you might feel. Don't get me wrong, yes we need breaks, yes we need time away from the kiddos, and need to make sure we are taking care of ourselves, but that mama love seems to give you strength to get through. There are moments where I feel like I'm falling apart and I just sit down, take a breath, and then get back to it.
Please please please pray for these little munchkins. They are exhausted and we just want them to be better and happy. We have missed almost two weeks of therapy because of this and we are so ready to get back to our normal routine and get some good sleep again. Also pray for Riley since he isn't feeling well. I wasn't feeling great for a few days but am basically back to normal, but Riley seems to have gotten this pretty nasty virus now as well.
In other news we are still trying to move. This is like the never ending saga. Still waiting on the tax returns which seem to like to never come. But hopefully we will get it within the next few weeks and be able to move to a place that has more space and and make it easier for the girls to use their equipment.
We head to Philly in a little over a week for all of the girls follow up appointments. We are hoping again to stay at the Ronald McDonald house and be able to see some friends at CHOP. It's a long trip but its so worth it for the amount of care we get from them. Next time I write I should have some nice updated information about how well the girls are doing. We are excited since we haven't seen our CHOP doctors in 6 months!
We so appreciate each one of you who follows our journey! I love when I am out and about and I run into people who follow us on facebook and read the blog. I love hearing how the girls have inspired you. A lot of how well they are doing has to do with all of you. The well wishes, wishlist items, gofundme donations, and letters really help Riley and I be better parents. It encourages us to keep moving forward . It humbles us knowing how many good people are out there and lets us teach that to our girls as they grow. To grow up knowing you have people all around the globe in your corner will be incredible for them! You guys are seriously awesome and we can't thank you enough. You've been an answer to prayers. There have been days where I was sitting on the couch crying because a certain bill is hard to get paid, and then a go fund me comes in, or we are trying to figure out which diapers were the cheapest because we were running low, and we would receive a few pack the next day and some every month! I wish I could express how grateful we are to each one of you. Please know we deeply mean it when we say thank you. And especially thank you for the prayers......"where two or more are gathered".....and we have people all over the word gathered who pray for our family, and I truly believe it's made all the difference. We love you all!!!
Lots of things are happening here at the Delaney house. Life is always at a constant running pace. Somedays it feels like it's hard to keep up. One day things are one way, and the next day things are a different way. It kind of feels like a game of ping pong going back and forth. But that seems to be the way life is. A constant stream of ebbing and flowing....and moving with it.
Please say a prayer for us. I had mentioned a few blog posts ago that we were trying to get pre-approved for a mortgage. Well unfortunately we did not get approved. Times are tough and finances aren't what we would like the time to be and it looks like it is going to probably be another 2 years or so before we are able to actually purchase a house. Riley recently got a new job and is considered self employed which makes mortgages a little harder to get. So all that being said we are still thinking of moving. We are busting at the seams. Our living room is basically a play/therapy room with a couch in it. (don't get me wrong I am not complaining...I love that my living room is full of the girls' things) But we are just running out of space, and need non-carpeted flooring so that the girls can start using their gait trainers (walker type equipment) at home and not just at therapy. They don't have much space to themselves, let a lone being able to be outside. So it is time for a change. And it is scary trying to get everything to line up just right. Trying to get our tax returns back, end our current lease, and get into a new place all at the same time is tough. But God always provides and we are praying so hard that he continues to do so. His timing is always perfect and I have to remind myself of that.
In other news the girls had an appointment at the pediatricians office recently for a check up. They are doing so good. We are so grateful that they are healthy, happy, and moving forward. And I am not going to lie a did a little happy dance because they both finally gained weight!!!! Weight has been such an issue with these little girls. Since they started moving a lot more its been a struggle to get enough calories in them so that they started gaining. And praise the Lord they each have gained over a pound in the past month! I love that they are getting real, normal, healthy food instead of formula. We love our nutritionist and GI doctors. They have all been so supportive of me doing a blenderized diet for the girls. I hear so many stories of doctors who say no to blended diets. But is is so much better. They girls are totally off their reflux meds and are gaining weight!!! They like to beat the odds over and over again.
We are still waiting on formalities to see if we can get the girls a feeding evaluation for the feeding clinic at CHOP during our next visit. It is not easy living out of state from all of our major doctors. Everything is always a process and comes down to the last second. We are also still waiting to make our rehab appointment. But our trip to Philly is coming up so quickly! We have lots to talk about and show the doctors. Pray we once again get into the Ronald McDonald House. That make such a difference when we travel to Philly because we don't have to spend a small fortune on hotels for a little over a week. It's a long trip for the girls so have some place to stay that is comfortable and kid friendly is amazing.
In other news the girls have started the process of preschool evaluations. We still aren't sure if we are going to start them in preschool this fall or next, but either way they needed to get their evaluations done. We have had 4 out of 5 meetings so far and they have been wonderful. Everyone is so accommodating and so excited to have the girls start school with them. They've gone out of the way to make sure we are comfortable with everything and to make sure they know as much as they can about the girls and their abilities. We just aren't sure if we want to change everything up this year for them. Right now we have therapy 4 days a week and mainly in the mornings, and we are getting ready to add aquatic therapy to the list (yay!). I just don't know if I want to chance sacrificing some of their therapies since they are so crucial right now for them. Preschool would take most likely two morning a week away from therapy. I know the girls would get some services in school but I feel like while they are still this young maybe we should still take the next year and really focus on therapies still and then start preschool at 4. I don't know. Still running things over in our heads and trying to make the best decisions for our girls. They deserve the best and we will do our best to give that to them.
The other part of all these evaluations has hit me in a different way. Any other medical mamas (or daddys) feel free to leave a comment or message me if you also feel this way so I know I am not crazy. But I am realizing that I struggle to let myself hurt. I don't know if that statement really works but let me explain....
Before the girls were born we didn't know anything. We didn't know if they would make it through the pregnancy let alone make it through separation. It was always "we just want them to be here and to be healthy'. And now they are healthy and they are growing and advancing and doing things no one knew if they would ever do. But the thing I struggle with is I feel like I am not allowed to hurt for them. I am not allowed to feel sad and upset that they aren't developmentally appropriate. I am not allowed to be upset and frustrated that they have feeding tubes and don't eat much by mouth. I am not allowed to be exhausted from breaking up little fights between the two of them because abby can't defend herself against Erin stealing her toys. I'm not allowed to be physically worn down because I have to carry the girls everywhere. I feel like I am not allowed to be these things because they are here. They made it. They survived something that most don't survive. I don't know how this comes across to everyone and I hope it doesn't come across as "Oh poor heather", but Its so hard to always be positive. Always be thankful. Always look at the good and never the bad. It is so so hard.
Doing the paperwork for these preschool evaluations was so tough. At checkups for the girls I don't have to fill out the developmental paperwork because our doctor is wonderful and knows it is just a sucker punch to have to circle no over and over again for what our children can do. But preschool evaluations are different. They need to know everything so that they can help facilitate the correct help the girls will need. But for the two hours that I sat and answered questions I cried. It is so hard to see your children different. When I am with them at home and at therapy everything is good. They are happy, they are healthy, and they are improving. But when you have to fill out questionnaires that are trying to figure out how old developmentally your child is it feels like the wind gets knocked out of you. We have a meeting at the end of the month to talk about where the girls are and what they need. And I am ready, I'm prepared, and I basically know already what's going to be said, but that doesn't make it easier. It doesn't make hearing that your almost three year old twins are maybe about a year old if not younger developmentally. And the worst part is we don't know if they will ever catch up. But again I have a hard time letting myself feel this way because they are here, and they're alive, and they're happy. It feels like my emotions are in this weird limbo.
Anyways we keep moving forward, one tough moment brings several great ones. And that is what I need to focus on. I need to remember that they are happy and they don't know any different. That they are here and living and breathing and bringing so much light to this world. Our lives have been flipped upside down and back again since we knew we were going to have conjoined twins, but we are so much better because of it!!!
Thank you to all of you who have donated to our go fund me and have sent items from the wishlist! It has been a huge blessing since things have been tough. Ya'll may not realize it but you're all answers to our prayers.
So it's official.....we have been home longer than we have been in the hospital!!! How amazing is that! Being in the hospital felt like forever, but since we have been home it feels like time is FLYING!! The girls are doing so well....
Abby has started to get herself into sitting on her own, and it also getting up on to all fours. She rocks back and forth and will be crawling before we know it. I can't wait to see her explore and see what she is interested in rather than what is just around her. Her little personality comes out more and more every day. When you pick her up in the morning she basically jumps while in your arms while shrieking with happiness! She is so so happy!
Erin is working so hard on standing. She is pulling up on everything and trying to get into standing. She will be in the middle of the floor on all fours and all of a sudden her little butt will be up in the air as she tries walking with her hands on the floor. It's amazing how determined this little girl is! I can't wait to see where she is a year from now. She is going to be running around me in circles!
So, what are the next steps in terms of their medical lives.....
This summer in June we are going to be traveling up to CHOP for a whole slew of follow ups yet again. We will see neurosurgery, plastic surgery, neurology, general surgery, our nutritionist, rehab, and possibly get a feeding evaluation for CHOP's feeding clinic. We will be super busy when we go up there. The girls most likely won't have any surgery for another year or so unless something new happens. I am glad that we still have time before that happens. I am not going to lie, I am not looking forward to it even though I know it is something that is necessary to keep their brains safe.
We are working hard to try and get into CHOP's feeding clinic. The girls are still fed through their g-tubes about 98% of the time. They are able to eat different things, the problem is they don't eat enough and they just aren't "great" at it. We have a friend who we met through the Ronald McDonald house whose son went to the feeding clinic and it worked wonders for him. So we are hoping and praying that we will be able to get into that. We are dealing with differing insurance rules from the clinic and the insurance company so please pray that things work out and that we are able to get things pulled together so that we can get the evaluation done when we go up in June. If the girls meet the criteria for the program we will schedule a time to start the clinic and will be headed up to Philly for 4-6 weeks. It won't be easy on us as a family since Riley will have to stay home and work, but if it benefits the girls we are more than willing to do it!
On another note there has been something on my heart lately that I wanted to write about...
I receive so many messages, comments, email, letters telling me what a wonderful mother I am. How they don't know if they would be able to do what I do, how I am so brave and strong for sticking up for our girls and walking this tough road with them. And I appreciate the words more than anyone will know. Those words build me up and encourage me. On the tough days those words remind me I can do this. But a lot of the people who send me these messages are mothers themselves. And I just want to remind those moms that they are amazing. Every mother, whether you have children who are grown and out of the house, and your only knew your baby while they were in your womb, you are amazing. You are strong and brave and would walk through fire for your child. You've endured hard days and even harder nights. You've been worried more times that you can count, and you've loved your child with more love than you ever knew possible. You are an amazing mom! Everyone's journey is different but raising children, is raising children. I hope that you all know how wonderful you all are! And you are even more amazing for wanting to encourage me on my journey with my children. I am forever grateful!!
In other news if you follow us on Facebook you will see that the girls are in People magazine this week. It's awesome to be able to share out journey with millions of people and hopefully encourage other families all around the county. So when you are on line at the grocery store pick up this weeks issue and have a nice read while you wait :)
a few prayer requests for our family...
- that we are able to get into the feeding clinic and have everything sorted out to get the evaluation done
-that we are able to get a room at the Ronald McDonald house
-that Riley and I will figure out a way to fix our cars....(finances are really tight at the moment)
-that being in People magazine will encourage families who are going through medical struggles with their kids
-for wisdom in some decisions Riley and I are making regarding some other things in our life
We are so grateful for each and every one of you who keeps up with our family. For those who send us notes, donate to our go fund me, and send the girls gifts. You are all so kind and wonderful. We are beyond humbled by it. It's amazing how many good people there are in the world. We wish we could hug each and every one of you!
I can not wait for March 22nd. On March 22nd the girls will have been home longer than they were in the hospital. That's a milestone I never knew if we could reach. So many days in the hospital filled with such stress and worry. To think that we have been able to enjoy the comfort of our own home with our family all together almost longer than we spent in the hospital is such an amazing thing!
I know it has been a while since I have blogged. Being a mom is weird. It's a never ending job that doesn't seem to leave much time to do things that you want to . By the time the girls go to bed in the evening I still usually have dinner to clean up and then pick up the mess left from the girls along with maybe folding a load of laundry. Then 2 hours after the girls go to bed I get their nightly feeds together along with a batch of medications to give them. Usually by the time that is given and the girls are back to sleep, because I'm not as ninja like as I would like I usually wake them up while doing those things, it takes a good 20 minutes or so to get them back to sleep after setting them up. So around 10pm is when I can sit down and do my thing....which is usually talking to my pillow. So to say that I don't get a chance to blog very often is fairly understandable. Anyways...
The girls are doing great!! They are officially 2 and a half already which is crazy! They are still the happiest little girls I know.
Abby is working on so many new skills. She is so close to being able to sit up on her own. She has done it a few times with a little help but I know one day I will find her sitting when I left her laying down and it will be amazing! I know that day is coming sooner rather than later! She is also doing amazing with her standing. When you stand her up in her AFOs you are able to let go of her for a few seconds and she will stand on her own....granted it's not long before she looses her balance, but still she is standing! She also is doing awesome on the tread mill. At therapy they have a tread mill that has a harness contraption attached to it and while Abby is in the harness she will take several steps on her own!! Its amazing to watch her little mind make the connections to begin the process of walking! Big things are coming for Abby and she is well on her way!
Erin is making new strides left and right! Today she ate a little piece of a chicken nugget!!! WHAT! She isn't a fan of purees but we have started giving her soft solids and she seems to really like them! She tried a few pieces of a peanut butter sandwich yesterday and loved that as well! It gives me so much hope that she will be eating soon! Keep praying because this is a HUGE milestone. She also have starting trying to stand up on her own when leaning on things which is also huge and now she is trying to pull up to stand! It's funny with Erin, things that click and all of a sudden she is doing new things. It's so fun to watch! She is so interactive and funny. She makes me chuckle so many times during the day just because she does so many funny things. She is an amazing little girl!
In other news last month our surgeons wrote an article that was published in the New England Journal of Medicine about the girls! It was really awesome to see! It spread the word about the girls again and it had brought another wave of encouragement our way which was so needed. Sometimes life just seems to bog you down. You know all the good things, and you remind yourself of the good things, but the monotony of everyday life can dig a rut. Being a special needs mom is a funny thing. Most of my friends are therapists, and the only places we really go are therapy, church, and my moms house. And right now we haven't been to church because of flu season and the girls have already been sick too many times this year and we want to prevent any more. So it can get pretty lonely sometimes when we are in our normal routine. We still struggle to do things that most children can do. We can go to the park, but all we can really do is the swings, and its a lot of work to get them both in the car, then the wagon set up, the girls in the wagon, and then out of the wagon into the swings only to swing for 10 minutes or so, only to have to do it all over again to get home. So we don't do it often. Story time is would be something we do but it conflicts with our therapy times. And play dates are tough since the girls don't really "play". I know we will get there but it is just taking longer than I guess I anticipated.
Another thing we are starting to think about is what school is going to look like. The girls are aging out of their early intervention services this summer and we are starting the process of switching everything over to the school systems. It's totally uncharted water for me because first of all I have never had children before and second not a child with special needs. I have no idea what school will look like for the girls, and I am honestly scared to send them to a pre-k type of thing just because of their needs and their immune systems. I know the social interaction would be good for them, but man, that is a hard one for me. Especially with these stories going around of children that have special needs who are neglected when they are sent to school. The thought of that happening to the girls literally makes me sick to my stomach. So the whole process is just new and uncharted territory to us. So please keep us in your prayers as we start to navigate this whole thing. Homeschooling has always been a thought in my mind, but we really want to do what's best for the girls and that may mean sending them to school so that they can get all the services they need.
Another new thing that is happening is that we are working on possibly buying a house soon! This has been something Riley and I have wanted to do for a long long time. Our townhome is great but we are very quickly out growing it. The girls have several pieces of large medical equipment, and closets and shelves full of medical supplies. We also have wall to wall carpet in our townhome which makes it really hard for the girls to use some of their equipment because its so hard to move on the carpet. Like trying to walk in the gait trainer is impossible where we live now because it is so hard to move on the carpet. I want them to be able to use these things when they're home, not just at therapy. So we have started the process and are on our way. Please pray that our tax return will be sufficient enough for a down payment. Our plan is to use that and we are praying that it is substantial enough to help us get the home we could really use. We would love a backyard for the girls to be able to one day run around with our dog and play in. It's amazing how many dreams can go into purchasing your first house. We are so excited and nervous at the same time. But we know God is leading our steps so we keep marching forward.
On the medical front there isn't much to report. We made it through the flu...that was a tough one. But other than that we are staying healthy and happy. We don't have to travel to Philly till late spring early summer and are just enjoying this little lul as best we can. It's nice to have some normalcy happening.
We so appreciate each and every one of you! We still receive messages and little care packages from people and it means the world to us to know that you are all still praying and walking in faith with us that our girls will keep growing and getting stronger and healthier. So many prayers have been answered my facebook messages from people offering diapers and encouragement. It really humbles us. We know God is going to be blessing all of you 10xs how you've all blessed us!!!!
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!