Our Journey with Conjoined Twins
Abby & Erin
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28
Romans 8:28
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!?!?!?!?
5 Comments
7/3/2019 11:23:29 am
Thank you for the update. It was very inspiring and exciting. The girls are getting big. Glad they are off that med. Will continue prayers, blessings to your whole family.
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Jessica
7/3/2019 02:08:24 pm
Wow- great update! Congrats on the house. Love the picture of the girls in the blue bows, looking so grown up. Try not to get too down about the feeding clinic or speech delays. It’s hard to prioritize and work on everything at once, especially when you have TWO babies! My daughter has developmental delays - sometimes I’ll see gross motor progress, sometimes speech, etc. It doesn’t have to all happen at once- even when we want it to! Your girls are doing great. And so are you!!
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Marie
7/9/2019 11:23:25 am
Try notube.com.
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Isabella Lucas
11/10/2022 05:01:01 am
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11/29/2023 05:51:22 am
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AuthorMy name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. We are trusting that God is going to work all this out for his good! Archives
March 2021
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