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.
This past week has been one of the most intense weeks of my entire life. It included being excited, nervous, terrified, relieved, worried, stressed, tired, overjoyed, overwhelmed, and curious.
On Tuesday morning the girls went in for a scheduled surgery. The plan was to separate a lot of the blood vessels that they share, close them up, wait to weeks, and then go back to the OR and separate them. We knew that this surgery would be probably the most risky once since they were going to be playing with the main veins. So my mama heart was struggling. On the outside everyone saw a strong mom who was ready to do what she needed to, but on the inside I was crying, and had been for weeks.
If you have never had your child undergo any type of surgery you may not understand this, but the surgery itself is the easy part. I can wait in the waiting room. Yes giving your children off to be operated on is not an easy thing. And i will tell you that I did fall apart for a little bit there. But at that point you know it's in God's hands and all you can do is wait. But for the past few weeks what I have been dreading is the post op. Watching your child go through immense pain that you can't even fathom is one of the most horrible things a parent can endure. You feel lost and helpless and everything in you wants to take it away from them but you can't. So needless to say during those few weeks leading up to surgery post op was heavy on my mind. We had no idea how intense this surgery would be and what recovery would look like.
So lets back track. The girls went off to surgery and Riley, myself, and our families went and waited, and waited and waited. We would get updates every hour or so but they were updates that were like "vitals are stable and everything is going good" and that was all we knew. About 5-6 hour into surgery our neurosurgeon came out and explained that they did what they wanted to do. They got more than halfway and had no problems. The girls did seem to share a tiny bit of brain tissue but nothing that he felt we really needed to worry about. Then it was time to hear about a decision that we knew couldn't be made until the girls were in surgery.
The decision of whether or not to continue and go on to separate them.
At this point everything had gone well and the girls were doing so well that between several surgeons they had decided it looked like it would be a better idea to continue.
They were going to separate!
In that moment we were flooded with emotions. This went from a fairly straight forward surgery to a very complicated one in a matter of minutes. This was no longer something that I was fully prepared for. This became the day that we had waited over a year for. Since the day we found out that we were expecting conjoined twins this day was on our mind. So many questions and thoughts race through your mind. When you have conversations with your surgeons and anesthesiologists that start out with "I know you know the risks BUT this is incredibly risky" you know that the surgery is not a little one.
Earlier in the day we had found out that this was a possibility but in my mind it wasn't going to happen. We had wanted it to happen for so long it felt like it never would. But in knowing that it was a possibility we were shown a 3d printed model of the girls heads that showed all their vascular structure. That model showed where the girls saggital sinus' were connected. It was explained to us that when they were to separate that they would most likely separate the sinus' behind the conjoinment meaning that Erin would get all of it and Abby would be left with very little, meaning that Abby would have a much harder time and would have a much greater chance of death.
When you are told that sort of information your world stops. And at this point the girls had already been taken back to the OR. I wouldn't have a chance to give her a little extra kiss, be able to give her a pep-talk and tell her to be extra strong. To tell her how big and brave she was. I wouldn't have chance to give her that little extra umph. Not that I didn't do all those things before, but to know that her sister had a better chance than her broke me. I felt so broken in half. And then after receiving that information how do you walk into a room and tell your family that. How do you, as broken as you are, go and tell a room full of people, who also love Abby so incredibly much, that she has the short end of the stick and may not make it through when they get separated. How do you watch everyone else feel broken when you yourself feel like your world is upside down?
You don't figure it out, you just do it. You tell them and let them work through it and pray that it doesn't happen, and you make yourself move forward.
So back to the story, so hearing that they were going to separate my mind immediately went to Abby. My heart ached and all I wanted to do was be able to hold their hands and tell them that they could do it. That they would make it through the surgery. That they were so big, and strong, and brave, and that they could do anything. But I couldn't. All I could do was sit, and pray, and wait. And so that is what we did. At around 7:30pm (12 hours after they were wheeled away from us) they gave us another update that they were still working and that their vitals were good but that we should probably move closer to the OR to get updates sooner (at this point we had been hanging in a reserved room on the other side of the floor as to not take over the OR waiting room with lots of other families). That is the point I should have known something was up.
Between that 7:30 update up until about 10 we didn't know much. We got very few and very vague updates. I had this weird pit in my stomach. I knew that they were close to that saggital and knew that that was the last thing that they were going to tackle. And I knew they would tell us when they were separate. So the fact that it had been a few hours and the updates hadn't changed made me very nervous. I was afraid to tell everyone how nervous I was feeling because I didn't want our families freaking out, but I have a feeling they could see how antsy I was getting and how I couldn't seem to focus on anything.
Around 10pm we got an update that our neurosurgeon wanted to speak with us. My heart was in my throat. This was the moment. The moment I would hear what happened and if they were separated and made it. And as I saw him come around the corner I could see the stress on his face. I could see the emotions trying not to spill out of him as he came towards us and sat down in the little room with us. He went on to say that the girls in fact had been separated and they were already almost all the way closed. And I was confused because I felt like we should have known sooner. But he went on to tell us what had happened....
When they separated the saggital Abby started to bleed. And when I say bleed I mean they replaced her total blood volume between 10-15xs. That is more than many of the anesthesiologists on that case had ever seen let alone have the patient survive. He said that he almost lost her several times but she kept hanging on.
At that moment I couldn't feel relief. I felt more like terror. Thinking that while we were sitting out in a waiting room one of our children was clinging to life by very little. I felt almost as if I could throw up. I hope and pray none of you ever have that feeling where you know how close to death your child was and how critical they still were.
We had never had a surgery or procedure that didn't end in "everything went well". So to have to end on a note of...we don't know what's going to happen left me in shock.
We went in to tell our families and everyone was happy and crying and excited, but all I could feel was shock. I didn't care that they were separate, all I cared about was seeing them. All I wanted was to have more information. I wanted to lay my own eyes on them and hear the report being given to nurses. I wanted to know what kind of condition Abby was in and see how Erin had tolerated everything. There were so many unknowns I felt like I couldn't even breathe.
We were told we had a little bit of time before they were actually out of the OR so we ran some stuff up to the girls new home the PICU while we waited. Seeing the room all set up for two beds brought me right to tears. Hearing the nurses say that they were going to be Erin or Abby's nurse was such a surreal moment. They were separate. They were their own person. It wasn't Erin and Abby anymore, it was Erin on that side of the room as her own patient, and Abby on this side of the room as her own patient. The realization of what had happened hit me like a brick wall. But we didn't have much time before we knew our plastic surgeon would be out to talk to us so we headed back downstairs.
And sure enough within 10 minutes he was ready to talk to us and tell us how his end of things went. He was actually able to fully close Erin, and almost close Abby. But because of the swelling in their brains they added some synthetic skin the give it some extra room to stretch as the brain swelled. As he talked a lot of things went in one ear and out the other. Thinking back on it I now realize how much shock I really was in. But when he finished telling us how it went he said...the girls will be headed up to the PICU very shortly.
In that moment I just wanted to leave everything, and everyone, and run to get upstairs. That feeling in me of NEEDING to be there when they got there was so strong I would have crawled through fire to get there. I have never felt that "need" so much before in my entire life. So we grabbed everything and ran.
When we got upstairs everyone was there waiting. It was around 11-11:30pm at this point. The girls had been in the OR for 16 hours and I was dying to see them and see that they made it through surgery. Within a few minutes Erin cam down the hallways. Surrounded by surgeons, doctors, anesthesiologists, nurses, nurse practitioners, and cameras. It was truly a sight to be seen. They wheeled her past me, and it was just Erin. Not both the girls just one. Erin had made it, she was here, she was independent of her sister! I didn't even realize that tears were rolling down my face. I realized in that moment how separate I already had seen them, because she didn't look much different. Her little face was still recognizable underneath the tons of head dressings. And she looked perfect. She was here and she was alive. And she had made it and it was a miracle.
As the pulled her into her bed spot I noticed a lot of worried looks and the monitors started beeping. They couldn't seem to get her connected to the Vent. The air would go in but none would come out. Someone had to stand and bag her while the tried to figure out what the problem was and as they were bagging her they realized it was getting harder and harder to bag her. So they ended up putting a camera down the tube and found out that the had gotten her tube clogged with some mucus. And while all this was going on I heard the Doctors in a tizzy because Abby was on her way up and they didn't have the man power to be helping get Erin breathing again, while trying to get Abby to stabalize.
It was at that moment that I realized I was about to have to pick between my two sick children. Who was more critical. Whose team did I need to listen to more. How am I supposed to make a decision like that. So as I heard the beeping coming down that hallway I decided I needed to see Abby. Erin had a great team who knew what they were doing. People who had been working with her since she was born. I knew they had her. They knew what her problem was and they were fixing it. So I changed my focus to Abby.
When Abby came in the tears flowed freely. I am usually a crier. I cry at the drop of a pin. But when it comes to the girls and hospital stuff I tell myself I have to hold it together or else I can't seem to hear anything. It's like when the tears turn on the ears turn off. And that's what happened when Abby came in the room. I just cried. She was here, her heart was beating, she was fighting, and she wasn't giving up. I didn't hear a word that was said. All I knew was Abby was here. She had made it out of the OR and the team was getting her stabilized.
At that moment I stood in the middle of the room in-between two beds and realized what had happened. We had two girls. Two separate girls independent of each other. They were on their own. They were fighting on their own. They each looked almost lonely in their beds without the other. It almost felt wrong in a way that they couldn't be with each other. I realized that I was now going to have to split myself between two children. Before I could stand in one spot and read them both a story. I could change Erin's diaper while chatting with Abby. I realized I couldn't do that anymore. I couldn't kiss them at the same time, and it blew my mind.
That night was a lot of ups and downs. Abby needed to get another PICC line placed to have more access for meds. I had paper work signed and they were doing that within what felt like minutes of her getting brought up. The doctors where nervous and I knew they didn't know if she would make it through the night.
But the morning came and Abby was still here. Both her and Erin stabilized enough during the night. They were both fighting harder than I have ever seen a child fight. They were under so much medication and paralytics that they just laid still. I could hold their hand but it wouldn't squeeze me back. I couldn't hear their voices, I couldn't see their eyes. It was very hard.
After that night things have slowly been getting better. The girls get a little more stable everyday, but having the sickest children in the hospital is a scary thing. Between heart rates and blood pressures and lots and lots and lots of different meds it has been a crazy few days. The girls have been heavily sedated, and on paralytics to keep their brain from trying to "turn on". They want the brain to rest in order to reduce swelling and heal a bit. Yesterday the girls got their paralytic turn off and their sedation turned down a little bit. They are by no means "awake". But they are starting to twitch and slightly move and pull away from pressure. Which is all good signs.
Both girls had some brain bleeds happen while they were in surgery. Abby significantly more than Erin. So we are waiting to see exactly what that means. Babies have this ability to bounce back from things like this because their brain still have so much growing to do. So we are hoping and praying that with some physical, occupational, and speech therapies the girls will bounce back. The girls are by no means out of the woods. They are still critical but they are taking steps towards being back to normal everyday. The weaning process will be a long one and we ask for prayers.
God apparently has incredible plans for these little girls since he got them through so much. They are a real life miracle and I am so blessed to be their mom. Yes this has been tough. Yes living at the hospital is not something I would wish on anyone. But I would do it any day of the week for these little girls. These days are scary. One minute the girls will be great and the next minute things change and meds are being switched and doctors are being called. Yes the girls got separated, but this is only the beginning.
Keep us in your prayers as the girls get more stable. Riley needs to head home soon so that we can start trying to find a house. This past month our finances have taken a hit since riley was here, so finding a house may be a little more challenging than we anticipate. It's just another thing to worry about. So he needs to get back to work and keep real life moving.
I will keep updating as things change. Hopefully within the next week or so the girls will be awake and extubated and I will be able to finally hold them, a moment that I have waited a VERY long time for.
Thank you so much for all of your prayers. They made a difference in my girls lives this week, and without them I don't know if they would still be here. It makes me tear up knowing what could have been and that it was because of your prayers that it didn't. We still have a long road to go but we've made it this far!!!!
We are also so grateful to everyone who has sent us gifts and donated to our gofundme! Those things have made it possible for Riley to be here and still have our bills get paid. We are very blessed and so grateful. It brings me to tears knowing that complete strangers want to help support our family during this tough time.
Right now we are not doing interviews but will be open to in the near future. If you are associated with any type of media outlet and you would like more information please contact Ashley Moore in the CHOP PR department. Thank you so much!!
Senior Public Relations Specialist
My 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!