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
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.
9 Comments
Ellie
5/3/2019 06:51:19 pm
I don’t think you should feel bad at all! Recognising the tough things takes nothing away from knowing your blessings. It is absolutely amazing to see all the progress the girls have made but still so sad that there are things they are struggling with. It’s kind of like the way you love your big nearly three year old girls, but miss those tiny tiny babies too - thinking one doesn’t stop the other, they are both valid! I hope it’s okay to ask, do you have a long term prognosis at all? I know with premies, for example, they play catch up for many years but eventually they are more or lass at the same level as their peers. Is this a realistic goal for the girls? Thank you for sharing your inspiring story and lovely girls - they are so sweet and so strong just like their mama 😊
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Heather Delaney
5/3/2019 06:56:13 pm
Thank you for your kind words! And no one really knows their prognosis since this isn’t a well known thing. There are very few other cases to compare them to and each is so different. It’s basically a day by day, year by year prognosis. We should know a little better what types of permanent issues they’ll have when they’re around 5 when development slows down a little. But we are hoping and praying they’ll be able to catch up and not have many noticeable differences.
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Cheryl
5/3/2019 07:57:27 pm
Heather, your feelings are absolutely valid and you are not alone. My medically complex daughter ( spina bifida - CHOP patient) is almost 19 years old, and the oldest of our 5 children. She graduated high school a year ago. She has had her worst year medically and Dr. Heuer just did her 4th surgery since last June ( 12th overall) a few weeks ago. Things are still not good and she may need to return to the OR in the next month or 2. So while all her peers have gotten driver's license's, gone off to college, gotten jobs, she has just been in a constant cycle of pain, surgery and recovery. I am a "veteran" medical momma and this year it has felt like I am back at the beginning, that punch to the gut feeling. I am in a place where everyday I am barely holding it all together. And yet just this week I know of other parents who have lost their kids, and then I feel guilty for struggling. There will always be others who are in a worse spot than you, but that in no ways takes away from what you are going through. Praying for your beautiful family. I would love to be able to meet you all someday. Our families motto is "He's Got This! Jeremiah 29:11."
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Patty
5/3/2019 08:06:15 pm
I can’t say that I understand conjoined twins but I do understand kids who are differently abled and kids who beat the odds. My son is an adult but I remember those early years as if they were yesterday. I know the pain of facing all the things your child isn’t doing that other children their age is doing. It’s okay to cry! It’s okay to grieve and to hurt over those things that you so desperately want for your girls. You are so blessed to have them and nothing will ever change that. The fact remains that you are still their mom and you want them to have every opportunity to succeed and enjoy life. The pain you feel is more for them than it is for you. You’re conflicted because as their mom you see them as perfect and you’re just so thankful to have them. So then why the pain? The pain is for them and it’s excruciating! These are some of the most painful years you will experience. Everyone is evaluating and you’re forced to see the delays. Remember, they are looking at the short term. You look at the long term. Someday no one is going to ask when they walked, talked or were potty trained. You’re in this for the long haul! My son wasn’t supposed to be able to even learn basic skills. He just spent two years reading on bees and has just started with his first hive. His passion is mowing lawns and snow blowing which he does and wants to build a business with. Never say never! You keep on doing what your doing and giving them every opportunity to succeed and stand back and watch God work!
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Susan (Mom of 12, Grammy of 10)
5/3/2019 09:45:20 pm
Dear Heather,
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Joan
5/4/2019 05:28:39 pm
You are such a good mom!! You have gone through such difficult times that I don’t think I could do. I understand that you feel bad about them not being where others are, but they are special. They have gone through so much. As a grandma I’d say keep them home another year, let them continue to thrive. Going to school you can be sure they will be sick the first week of school. My daughter is a teacher so I hear when the kids are all sick at the beginning. Just continue to bring everything to God, He will guide you as He has been doing. I will pray for your angels and you and your husband. Sending big hugs and love!♥️
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Andrea S
5/5/2019 11:05:00 pm
You are absolutely allowed to feel all those things! I have 12–year old identical twins. One is typical, and the other has severe special needs. One thing I learned when they were small is that I needed to grieve the loss of what I thought or hoped they would be, although, like you, I was grateful they had both survived. Look up the five stages of grief. Even though your girls survived and are improving and are super cute, you still need to grieve all that has happened and is happening. It is hard emotionally and physically to do what you are doing. Hang in there, and know that, although your specific situation is rare, you are not alone in mixed emotions and with raising kids who are currently behind typical milestones.There will be both more difficult and joyous times along the way. You can and will do it!
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emily c
5/8/2019 03:55:36 pm
your baby's are so cute and very rare to there all over youtube awwwwwww 💕💕💕💕
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Isabella Lucas
11/10/2022 05:01:22 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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