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'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!!!
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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. |
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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