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
This journey is such a whirlwind. Never in my wildest dreams did I think that I first off have conjoined twins, but second that I would live the life of a medical mom. That I would be watching my children have several surgeries, undergo countless procedures, and be in the room from lots of CT scans. It was never something that even crossed my mind, but here we are. This is my life, and as hard as it is sometimes I wouldn't trade it for anything. It has taught me so much. It has made me a better person. As I sit here listening to the beeps and hustle of the ICU I'm reminded how blessed we are, even in the tough times. For those who are just catching up, the girls had a major surgery on July 12th. They had something called a cranioplasty. The had an implant put into their heads to reshape and fix their skulls. The original plan was to have the girls have their surgery, spend one night in the ICU and then get transferred to the floor for maybe a weeks time. But before abby even left the OR things already got tricky. She had seized coming out of anesthesia (something they were prepared for given the surgery and her history). They gave her medication and got the seizure stopped. When she finally got up to the ICU she was pretty much still asleep. She was breathing on her own but wasn't responding to anything. After a few minutes she was transported down for a stat CT scan to make sure that everything was ok since she had a seizure. She was teetering on being stable the whole trip, they were arching her neck to help her breathe because she was so sleepy that her airways were getting floppy and not working well. When we got back to the ICU the decision was made to re-intubate her because they weren't sure why she was still so sleepy. They thought it could have been the medications she was given for the seizure but they shouldn't have lasted that long, or it could have been that she was seizing and we just couldn't see it. So to be safe they re-intubated and had her fresh out of surgery head hooked up to EEG. Mind you all this was happening while Erin was down in surgery. It was quite the whirlwind. It took Abby a few hours to finally show signs of waking up, and let me tell you those few hours were terrifying. On the outside I was cool, calm, and collected. But on the inside I was screaming and pleading with my baby to wake up. To have to call people to start prayer chains because your baby isn't waking up is gut wrenching, and something I don't wish on anyone EVER. Thankfully, she woke up and hasn't missed a beat since. She had a few hiccups with not being able to hold down anything for a few days (I don't think she got actual food in her belly that stayed there for about a week). Because of that we got yet another CT scan to make sure she wasn't vommiting from an issue there and she got x-rays to make sure nothing happened in her bowls. Everything was clear. So we are guessing it was one of the medications that she was on making her nauceous. Since she has come off all of the pain meds she has been tolerating her food great! She isn't at the speed we were when it comes to getting her food in her g-tube, but we will get there. If all goes according to plan she should be discharged tomorrow!!! She will go back to the farm with my mom and resume her outpatient therapies and appointments until we are ready to head home to NC. She is such a miracle. And I am the luckiest mama to have Abby be one of my babies. She is so fierce and strong. The things her little body has gone through in her very short 5 years is more than most go through in a life time, and she is still one of the happiest little girls I have ever met!! Erin's surgery went fantastic. She came back to the ICU after awake and content on her pain medications. It took her a couple days to get back to her normal feeds but we got there. Because of Abbys shenanigans when she came out of surgery we were in the PICU I think it was three nights rather than one. Which wasn't terrible for throwing us off our initial "about a week" stay thoughts. But a couple days after Erin was sent down to the floor the drain in her head started leaking at the site. It started leaking a little bit and then over the course of about 24 hours she started leaking a lot. They would put gauze around it and it would completely fill the gauze within an hour or two. All of that leakage was CSF. When it started getting bad things happened pretty quick. A lumbar drain was mentioned one day and then within 24 hours she was scheduled to go to the OR to have one placed. What the lumbar drain does is help drain her CSF in a controlled manner so that he won't leak or pool in her head. So right now she still has the drain in her head, and the Lumbar drain. Getting the lumbar drain went well it was just that we had some tough times getting things "right". First the were draining too little every hour and CSF was pooling under her scalp. So they doubled how much they were draining, and that was too much and she got an awful spinal headache. Her heart rate shot up and was screaming she got sweaty and when the doctors sat her up she threw up all over. She got pain meds, an IV fluid bolus, and zofran, and slept for a good 4 hours and then was back to herself. So they went back down to what they originally were draining to keep her at baseline and then went up just a little and we found what seemed to be a happy spot. The fluid build up wasn't bad and she wasn't getting headaches, everything was good. The Erin, being the very busy child she is, broke the connector on her lumbar drain and was leaking CSF all over herself and her crib. Within minutes she was screaming from yet another headache, although this time she was having to be held down while they fixed the drain. It was truly awful, and it broke me. We have been through so much, but watching her screaming in pain, so much that her eyes were rolling was unbearable. She was clammy and pale. It was one of the worst things I have ever seen. That day I had to go down and just sit in my car away from everyone and just cry. I wasn't expecting all this, this go around. I was hoping for smooth in and out, but I should have known better. Since then things have been status quo. They drain Erin every hour, and he gets her hourly neuro checks. She is on her full feeds, and isn't needing any pain medication which is all AWESOME. The only problem is that every morning that is a nice pocket of fluid that builds up in her forehead. The drain in her head is supposed to take care of this, but it doesn't seem to be working, and as of tomorrow it will have been in for two weeks, which is too long. Tomorrow that drain will get pulled and we have to hope and pray that her body will start to take over and start pulling the CSF down to her lumbar drain and eventually stop producing so much. Her head needs to heal enough so that the CSF can't pool up there. If these things don't happen she will need to have another surgery to fix the leak that is happening. The thought of that makes me physically ill. As of tomorrow we will have been here for two weeks. And at the moment we don't know when Erin will be discharged. She is in the ICU until her body can figure things out or until she has surgery. We are hoping and praying things heal up and start working. We so badly want to be home. We miss Riley, and our family and friends. We miss going to church on Sundays, and seeing all the girls' therapists during the week. Riley and I have tickets to go to a concert in the end of august as a "welcome home" date night. We haven't done a big date night like that in years, and now we are just hoping to be home in time to make it. Riley is also dying to have his family back. He is lonely and struggling, and it's easy to see why. I know things can change here in a matter of minutes, but that can go either way. So please keep praying. As much as Erin "looks" well, she isn't, and her body is struggling. Another thing that happens tomorrow is hopefully Abby will get discharged!! This is wonderful for her to get out of the hospital and get back to her routine. The hard part about it is that siblings under the age of 12 are not allowed to visit. So it will be tricky, I will have to sneak away to see her during her therapy appointments. I will have never been apart from one of them for more than 24 hours before, so it is going to be a bit tough for me. But I am so so glad she will be getting back to normal, and am so so grateful that my mom is here and is able to take care of Abby just as good as I would. You all have been so kind sending gifts and donations. We have been blown away by the love we have been shown. We weren't expecting to be "in" the hospital this long and things are expensive here. And you guys have sent my mom and I meals, and gift cards, and have kept us from having to stress about the money aspect of being inpatient. We are so grateful. I heard a song today and God spoke to me through it. Some of the lyrics are as follows.... "yes he can" by CAIN Sometimes those voices try to tell me I’m forgotten, and I’ve fallen Too far from His hands But I know what kind of God He is And I’m trusting in His promises I’m believing And I’m singing Yes He can Cause I’ve seen too much Now I can’t deny He’s come through Every single time From the beginning until the end He did, He will, He can So I am speaking that over our situation tonight, as tomorrow will bring new answers......HE DID, HE WILL, HE CAN
3 Comments
Lisa Mullen
7/25/2021 10:07:08 pm
I know how expensive hospital stays can be. I will continue to donate when I can. When I donated my liver to my sister my husband stayed with me for 8 days. It got expensive. More importantly I will continue to pray for you, the girls, and Riley.
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Jeannette
7/26/2021 01:00:01 am
Wow, you're one strong and brave mama. I can't imagine having to go through all that and to still be standing! God is holding you up!!! And your two beautiful girls are superbrave at well. Praying for you all (Riley included) . Big hugs
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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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