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
Our time here is PA has been a whirlwind so far. We have been here a little over a week now. The girls have already had one surgery, and we are well on our way. We have settled into our host home and love it here. It is so peaceful and the air is so fresh. There are all sorts of animals around and the girls love watching them. There is a big driveway that Abby can run around in when she is in her walker and a barn with all sorts of games and toys. We have been very blessed with our host family. They have truly been wonderful. We got here a couple days before easter. It gave us enough time to settle in and go food shopping and get familiar with our lodging before the girls had their surgery. Then this past monday ( a week ago) the girls went in for surgery. We got to the hospital a little before 10am. Abby went back for surgery around 12 and then Erin went back around 1:30-2. They went through surgery great with no complications and no issues. Everything went smooth with very minimal blood loss. Everything just went as well as it could have. Then....all hell broke loose.....let me paint a picture for you....we are sitting in the room with erin waiting for her to be taken and waiting to hear when abby was back. Everything is nice and quiet. All the other kids who had come out of surgery were sleeping peacefully. Then a nurse came to our room and said "mom we need you". Which never means anything good. As soon as I walked out of Erin's room I could hear her screaming. She was so so upset. (let me remind you everyone else around is is sleeping off anesthesia peacefully). Abby just wouldn't settle. Not only would she not settle but she would hold her breath and her O2 levels would drop to 70. She ended up getting several pain medications that did really nothing. They didn't settle her or knock her out, she just kept crying. She finally settled enough so that I could switch out with my mom (who I had sent to get food since we hadn't eaten yet that day) and run and get something to eat myself. I got back to Abbys room with just enough time to eat. She was finally settled enough but every few minutes she would sit straight up in bed and start screaming. She would cry for about a minute or two and then settle out again. It was this vicious cycle. Eventually she calmed down enough where she wasn't screaming. I was hoping and praying Erin would have an easier time. Within a few minutes of Abby settling I could hear erin coming....I looked out the door and didn't see anything and thought I was hearing things, and then 30 seconds later her bed rounded the corner and sure enough she was screaming. She was a whole other kind of hysterical. She was screaming and thrashing and rolling around the bed (mind you she has several stitches in her head that were still slightly bleeding.) I instantly went to grab her and they were unhooking her IV and her leads trying to make it so she didn't tangle herself. I got her out of bed and it didn't help AT ALL. She was still thrashing and flinging her body and her head every direction. It was like she didn't even see that I was holding her or she just didn't care. I ended up trying to walk the halls with her but she kept doing the same thing...and remember we weren't the only ones there. All these other kids are in post op and are SLEEPING! I was worried, frustrated, scared, embarrassed, sweating, and I knew everyone was staring at the possessed child who just came out of surgery. We walked and we sat and we rocked and we swayed and nothing was helping. I did this for probably 15-20minutes which felt like an eternity. Literally she was screaming so hard she was getting hoarse. And then I lost it. This was my second round of screaming post-op child. I was exhausted physically and emotionally. And I was frustrated that nothing was helping. So the nurse sat me in a wheelchair, I held Erin, and she pushed us around the halls. It took another 15 minutes or so for her to finally settle out. It was rough. And we got several funny looks....but it worked thank the LORD! I was wheeled into the room Abby was in and just sat in the wheelchair and didn't move a muscle. She slept for a little bit and would wake up and cry and then fall asleep again, and then wake up and cry. A couple hours went by and the nurse offered to take her for me so I could go to the bathroom and she told me to go get something to eat and take a minute. When I got back they had finally gotten us a room. We got to the room and had to switch out the beds for cribs which took a little while and all the while the girls just kept having crying spell. It was honestly exhausting. Finally around 10pm they both crashed. But in order to have that happen I had to sit outside the room because Erin would not settle unless she was on me. So my mom put her in bed and helped her calm down enough to fall asleep, but if I was in the room she would loose her mind until I held her...even if I was at the bed with her, it just didn't work. But finally around 10 they both fell asleep, we ate and then we went to sleep. After talking to numerous nurses and doctors it was decided the girls experience emergence delirium. I grabbed this from a website to help explain.....Delirium and agitation can occur as a child awakens, or emerges, from anesthesia. Emergence delirium (ED) may be distressing to the patient, parents, and caregivers, and can result in inadvertent removal of intravenous (IV) catheters, drains, and dressings, and rarely, self-harm. ED is an altered state of consciousness, which begins with emergence from anesthesia and continues through the early recovery period. ED is a disturbance of awareness of, or attention to, the child's environment, and manifests as disorientation, hyperactive behavior, and hypersensitivity in the immediate period after anesthesia. Next time the girls have surgery or any anesthesia this will be brought up and they have special medications for this. So fingers crossed things will be so much easier next time around. And we will make sure it is brought to everyones attention. I was not mentally prepared for any of that. I pride myself on being able to handle a lot because we have been through a lot. But for some reason this just broke me. I felt like it was one of my not so good moments. I was sweaty and crying and my mask was gross and I was just all over the place. Thank the Lord for amazing nurses who are there and willing to jump in and help and who do their very best to make you comfortable. They were all incredibly encouraging and did everyting they could for me as the girls' mom and for my mom as well. Which let me add in here my mom is such and MVP here. She jumps in when I can't. It is hard because I need to choose who needs me more at any given moment. But I'm not worried about those decisions because I know whoever doesn't have me has my mom. And the girls LOVE their Mimi. I am so lucky to have such an amazing support person with me. If I can't have Riley, having my mom is amazing. She is so good with the girls. She knows how to care for them and do everything with their g-tubes, she knows how to use their equipment, and she understand when the want something. I am just very blessed to have such an amazing mom be with me during these times. And sitting at the bedside of your crying granddaughter is not an easy thing. But she keeps her composure and calms them and in turn calms me and makes sure that I am ok as well. She's amazing. The girls were discharged the next day and we have just been hanging at the farm. The days have been a little tough, the girls are off their normal schedule and have been sore. They've been cranky and clingy. And they don't go to sleep easy either. And Erin has this new thing with temper tantrums where she just screams. She doesn't cry...she just screams. And it's exhausting. But they are healing and getting better everyday. They will eventually settle into the new normal. We have gone for walks, played in the bath tub, let them run around outside, and today we went to an indoor soft playground. They just get bored easily so we are trying to keep them occupied. (side note : I would love it if anyone has any ideas for us on either things to do at "home" or places in the area that have fun things to do. We are near Newtown Square, PA.) It hasn't been the easiest but it is just one day at a time. We don't have any appointments for a couple weeks now. The girls are just healing and recouping. Then we have an evaluation for therapies at the end of the month, and then they have a plastic surgery follow up and a 3d head CT scan the week after the therapy evaluation. As much as these days of having nothing to do can be tough I am trying to enjoy them as I know things are going to be busy before we know it. We are so grateful for all the well wishes and encouragement and support during this time for us. It is hard to be away from the comforts of home and family. Even the little things like missing seeing the trees in our front yard bloom makes me a little sad. But is is one day at a time and I am so grateful for where we are and for all the support and for all the amazing people in our lives who help us here, and who are helping back home. We are in the process of writing this next chapter and we are so grateful for all of your participation in it!!! I have had a lot of people ask what they can do to help, I am going to post our registry link, our venmo link (we also have paypal if thats preferred). Also if you would like to send Riley a dinner or a dinner gift card just send me a message on Facebook and I can help you do that. We love all of you and you have all been AMAZING!
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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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