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 not going to lie, I have started and stopped writing this blog post a few times. It's been a long month with a lot of homesickness. Tomorrow will be the 3rd time I celebrate the 4th of July in Philly with the girls. The first was when I was pregnant, the second was a month after they were separated, and the third will be tomorrow. It's crazy how things happen. But it is time for an update! This past month has felt like it has taken forever. A lot of hospital visits, a lot of appointments, a lot of planning, and a lot of driving. We are still at the hospital Tuesday-Friday every week. Most of those days are fairly early mornings. Out appointments usually start around 9 or 10..which doesn't sound early but when you are 45 min away and having to take into account the city traffic we try to leave an hour and 15 min before appointments. That way we arrive with 15 min to park get the girls out of the car check in (twice) and get to our waiting area in time to be called back. So those 9am appointments have us leaving by 7:45. And let me tell you, waking up two toddlers to get ready and get out the door is not very fun, especially when all you want to be doing is sleeping yourself. So we are all a bit tired by the end of the week. But we are able to "rest" on the weekends.....if there is such a thing as rest with these two little girls. They are all go until they crash at night. But we have been very blessed that the family we are staying with let us use their beautiful pool. Not only is this a great way to wear the girls out during the day, but it is so so good for them and their muscles. It's therapy that they don't even realize they are doing!! We've spent many hours floating around the pool. Abby is in love with the water and will stay in the pool the entire time that we are outside. We use the pool almost every day that the weather allows!! The girls have been doing well in their therapies and a slowly but surely still progressing. The past two weeks have been a bit tough. I was sick for a little while at the beginning of the month which was really tough because I was here alone at that time. I eventually after two urgent care visits found out it was a weird bacterial infection I most likely picked up at the hospital (pretty much inevitable when you are at the hospital 4 weekdays a week) SO after two rounds of antibiotics I am finally back to healthy normal. During my first round of antibiotics my moms was able to come back, and she ended up getting sick with a nasty cold as soon as I started my second round of antibiotics. After two urgent visits for herself she was finally on the path to recovery and is still not 100% but almost there. Then about a week after my mom got sick Erin started getting sick and then two days ago Abby started. We've been living in a sea of tissues and vicks vapor rub. We are praying so hard that the girls are healthy enough for surgery on the 12th. This was not great timing but at least there was enough time for them to recover. Ultimately it will be up to anesthesia if they want to postpone surgery or not but we are praying we can go ahead with things as scheduled. One of the worst things about everyone being sick and just not being home. When we aren't home no one sleeps as well or is as comfortable as they are when they're home. I ended up doing a week of appointments with the girls by myself but the girls therapists and doctors are wonderful and helped make everything work out. We had a few overlapping appointments because we were planning on having two adults present....but things don't always go according to plan. One of those overlapping appointments was for Abby to get botox. The plan was for her to get botox injections in her arm and her leg. I know I don't talk about it very often but because of the damage that the girls' have as a result of separation, has left them almost like a stroke victim. They each have a weak side of their body. Erin uses her left side and her right side is weak, Abby uses her right side and her left side is weak. If you watch videos closely of Erin walking she has a little bit of a limp. And when you see them playing they always only use one hand and the other hand "assists". Abby has a harder time with her left side than Erin does with her right. Abby has a tight arm and usually has her hand in a bit of a fist...she has times where her hand is open, but her relaxed hand is almost always closed. She also is still when it comes to stretching her elbow out and getting her arm up in the air. Also when she stands without her braces her left foot is almost always pointed and very stiff. It is a bit of a struggle to get it into her brace and sometimes she even has some clonus in it. Because of that the girls rehab doctor recommended Abby get some botox injections to help relax those muscles. So she ended up getting 4 injections in her arm and two in her leg. It can take a week or two for things to start taking affect and it will really kick in within 4-6 weeks and can last a few months. We are hoping this helps!! The appointment wasn't fun for her or I but she made it through like a champ and stopped crying just a few minutes after it was done! Fingers crossed we get some good results! If everything goes according to plan the girls will have surgery a week from Monday!! July 12th! This is a goal that we have had for a while but now that we are here I am so nervous!! I have total faith in our team. Our doctors and surgeons are AMAZING and we love them so much!! But this is a big surgery. For those who are playing catch up with our story, the girls right now don't have any bone on the top of their heads. It's like they have a very big soft spot like a baby. This surgery is going to fix that. Our doctors have had custom made implants made that will fix the big hole and protect their brain and give it a better, more normal, environment. It's a very big implant and there are always risks. There are risks of course of bleeding but the biggest risk is infection. Whenever there is an implant there is a risk of infection. The girls will come out of surgery fully shaved and also they will have some drains in. They will most likely spend a night in the Pediatric ICU and then get moved to the surgical floor that we had spent a lot of time on before and after separation. They will be in the hospital for about a week as long as there are no hiccups. Once they are discharged we will have to stay in the area for at least another 2 weeks. During those two weeks we are going to have to be very careful to prevent any infections. We most likely won't be going anywhere or doing much at all. There will be no more swimming for a while and no playing outside till everything is healed up really well. Going through all of this again makes my stomach turn. We had an appointment a week or two ago where I had to sign consent for everything and I had a hard time holding back tears as I walked to the car afterwards. The amount of stress and anxiety in making these huge decisions for your children is crazy. A lot of days I don't feel it right up front, but it comes out in weird ways. I am ALWAYS tired. I feel like I just can't ever get enough sleep. I get a short fuse some days and just want to explode. I caught a weird bacteria from the hospital most likely because my immune system is down from the stress. And of course I miss Riley so much it hurts. Like I literally can feel how much I miss him. It's a strange feeling when you want to leave so so badly, like every part of your being is telling you it's time to go, but you know you need to stay. We are trying to come up with some fun things to do for their birthday because of course it lands during those few weeks post op where we won't be able to do much, so if you have ideas please let me know!! We are going to have a little cake for them with the other people who are around here at the farm and most likely do something once we are home. But we always like to try and make their actual birthday a special fun day for them. It's just another tough thing about being away from home that we aren't able to do things we normally do. The homesickness is real. Between my mom and I we have enough homesickness for everyone! I know the girls must miss home and be confused if we are even ever going back or if this is their new home. We talk about going to home them but we never know how much they actually understand. I find myself getting angry and the stupid little things...like when I spill a drink, or the girls get into something they aren't supposed to. It is in those moments I am just angry that we are stuck dealing with all of this. I know God has a plan and he has been so good to us throughout the girls' lives, but I still have my off days, I'm still human. It's tough. So many people will tell me "oh you are so strong, I don't know how you do it" and I think to myself I'm not strong, a lot of the time I am kicking and screaming that I have to do it. I don't want to. But I do it because I have to. I do it because my kids need it. Riley stays home alone away from his family because he has to, not because he wants to. But we do it because we know it is the best thing for our girls. We know that this is the best place for them with the best care! prayer requests - -Surgery to go smoothly and NO INFECTIONS -For Riley to have a safe trip up here for surgery -For the homesickness to not be so present and for us to enjoy this time no matter how hard it is. -For our finances (gas just keeps creeping up and is killing us with our 45min-hour each way commute to CHOP) -For the time inpatient to go smoothly and that the girls handle the poking and prodding well We hope and pray you all have a fun, safe, and Happy 4th of July (to those that live in the states) We love you all and are so grateful for all that you have done to support us during this time!! There are several of you who consistently send things, send messages, and encourage us. We are so grateful for all of you and your prayers!! They say it takes a village, but for us it takes a family that is all over the world!!
3 Comments
April Harris
7/6/2021 05:13:16 am
Praying much for you all. God bless you.
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Pamela judd
7/12/2021 06:44:57 am
Prayers for your beautiful girls,may everything go perfectly
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1/23/2024 04:11:02 am
Love this article! I love to read this article and I really enjoyed reading your article. I am so glad to read this article. Thanks and keep sharing.
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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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