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.
,These past few months have been filled with every emotion I could think of. There have been many times that I wanted to sit and write but both Riley and I had decided it was better to keep things quiet with the girls till we felt that they were doing well and were comfortable having everyone see us again.
So back to June.
The weeks after the girls separation were filled with many terrifying moments. I know that when you see stories of conjoined twins being separated its so exciting and everyone is so happy. I wasn't able to have that moment for a while. When dealing with the brain things can change in an instant and because of that I lived at the hospital for the first almost month after the girls were separated. I slept in what is called a sleep room on the floor above the girls and could actually see their window from the hallway that led to the sleep rooms. Being there gave me the opportunity to be close, God forbid anything were to happen in the middle of the night. Those weeks were the most intense of my life. Being told your children are the sickest kids in the entire hospital (when people from all over the world come to this hospital to have the most rare things treated) you know things are going to be rocky for a little while.
Both girls did have bleeds in the brain. Abby had more than Erin since Erin was the one who received the saggital sinus. Both girls were intubated and basically in an induced coma for a few weeks. They lifted Erin's coma first. She would wake up and look around but that was about it. She would squeeze her one hand but wouldn't do much else. Because she wasn't used to having a breathing tube, she was very angry about it. So angry that she would bear down and make herself not breathe and would desat, meaning her heart rate and oxygen would drop. There were a few times she did it when her heart rate would drop to zero for a few seconds, which would literally feel like an eternity. When you see your child's heart rate on a monitor and it reads zero your knees go week. You can't hear or feel anything. Everything in your entire being is willing her to "come back". When she would finally pop back up I felt like I was going to puke. I knew she needed to get the tube out so she would stop doing this but because her meds were still too high she wasn't able to breathe on her own. So this went on for a few days before they were finally able to extubate her.
About a week after the girls were separated Erin's nurse came to me and asked if I was ready to hold her. The emotions that welled up inside me at that moment I can't even describe. She was offering to give me the moment I had always dreamed of since the moment I found out I was pregnant. To be able to hold my child, all on her own. She was still intubated at the time but the nurses thought that maybe if I held her she would calm down enough that she wouldn't do these crazy "zero heartrate" episodes. So they got me a rocking chair and the team came together to help get her out of bed. The amount of tubes, lines, wires, and drains was insane. We needed several nurses and a respiratory therapist to get the job done. As I sat in that rocking chair watching them get ready to make the transfer my heart was in my throat, I was about to hold one of my daughters. They put her in my lap and all I could do was cry. She settled in and within a minute her heart rate settled and she completely relaxed. So much so that she fell asleep, something she didn't seem to be able to do until she couldn't be awake anymore. I sat there with her rocking her for hours not wanting to move. They finally told me after holding her for about 3 hours that I needed to put her back, what I didn't realize was that they wanted me to put her back so that I would also have the chance to hold Abby that same day. Talk about feeling like your heart could explode. So they put Erin back and got me all set up to hold Abby. The same process of lots of people, lots of tubes, lines, wires, and drains, but the moment she settled into my lap complete peace. She melded into me, she knew I was her mom. Even though she could barely open her eyes I knew she knew she was with me.
Both girls ended up needing to go back to the OR for a washout of their heads a week after surgery. So the both went back (at different times). It felt like such a long day because it was one after the other. Each baby only took two hours or so but it felt so much longer since we had to do it twice. A week later Abby needed to go back for yet another wash out. These were done more as a preventative measure. The first washout showed that the girls had some bacteria, and since Abby's white cell count wouldn't go down they wanted to go back and make sure that she was still clean in there. Thankfully the girls didn't get any infection from the surgery, God was really in the midst of every single step of the girls recovery. Infection was one of the surgeons' biggest worries. And the girls never had any issues.
Erin was extubated successfully a little while after her washout, but its never a fun process to watch. They turn a lot of the meds down to make sure that she is awake and angry enough that she will breathe when they pull the tube out. And she was angry! She was so angry that she was gulping air since they have deflated the cuff so she could get a little air in and out on her own. Because of the gulped air, her belly got really big and distended. It was big and hard and looked so so painful. They had to put another tube down her nose to pull some of the air out because if they extubated her with the air in her belly, it would put pressure on her lungs and make it harder for her to breathe when the tube came out. But, like I said, thankfully she was extubated successfully and the gulped air didn't cause a huge problem.
A few days after Erin was extubated, was fathers day. Up until this point I had been living at the hospital and Riley was going back and forth to the Ronald McDonald House. He would bring me fresh clothes and snacks everyday. So I decided that Riley deserved a night out since it was fathers day. During the day he came in and was able to hold Abby for the first time. I fell in love all over again watching that moment. It's nerve wracking being handed your child who is so fragile and frail. It's incredibly intimidating have five people hovering over you because that's how many hands it takes to get her out of bed. I was so proud of him for wanting to hold her despite all those things. I watched him beam as he looked at Abby's puffy little face. Later that night we decided we would go out to dinner. Not far, only 10 blocks or so from the hospital, and only one block from the Ronald McDonald House. It was nice to get out and be able to breathe for a few minutes. Little did I know that this dinner would be the most terrifying dinner of my entire life.
In the middle of our dinner, right about the time the waiter brought our dinner, I received a text from a good friend who was also a parent in the PICU at the time. She was at the hospital and texted asking if I was there and if everything was alright. The feeling at that moment left my body. She went on to say that the code bell was going off for the girls' room (a code blue means that they need extra hands because something bad has happened/is happening). The tears instantly started to flow and I told Riley to get the check and I ran outside to call the hospital. As soon as I got the nurse on the phone the Nurse practitioners were trying to call me. They explained to me that Abby's pupils were different sizes and not reacting well, and that that could mean that something is very wrong and they were ordering a STAT CT scan. I couldn't believe that the one time I left the hospital this was happening. And I was 10 blocks away on the hottest day of the summer without my car. So needless to say Riley and I ran. I cried the entire time I ran. All I could think was I know everything that happens with the girls, and I didn't know what was going on. I wasn't there when she needed me. My lungs burned and I felt my face burning as well. My entire body was sweating. I was just trying to remember to breathe. Your mind instantly goes to the worst case scenario in these situations. I hope and pray that those of you who are reading this NEVER have to experience that feeling. A feeling of such helplessness, that your child could be bleeding inside their brain and not only can you not stop it, but you aren't even there to hold her hand and tell her you are right there for her. I don't think I have ever prayed so hard in my entire life. I wanted to scream, God please don't take her from me.
We finally made it to the hospital. It was the longest 15 minutes of my life. When we walked in they had just gotten her ready to make the trip down to CT. A nurse grabbed me a cup of water, Riley stayed back with Erin, and I followed the parade of drs, nurses, nurse practitioners, respiratory therapists, and aids who took Abby. We got down to CT and I am usually allowed to go in, but since Abby was so critical at that moment they wouldn't let me go in. There were too many people that needed to be in there as it was. So i was put into a small waiting room. It was around 8-9pm at night on fathers day, so needless to say there was no one else in the waiting room. All I could do was sit pray and cry. I sat in the waiting room for a few minutes and started to feel like I was going stir crazy, so I actually went into the hallway and sat on the floor outside the CT scanner room so at least I could hear if anything went wrong. After what seemed like an eternity they came back out. Thank God she didn't have any more bleeds in her brain. Everything was stable, and actually looked better than it did on her last CT scan. I really do believe it was a miracle. To this day they still can't figure out why their (both girls) pupils change sizes, and it doesn't affect them. God is good!
A few days after that, Riley had to go home. We are so incredibly grateful for all of you who donated to our gofundme. It was because of you that Riley was able to stay as long as he did. He was here for almost two months. He came a few weeks before the girls' surgery to help me with all the meetings and prep and to just enjoy the girls. It was a huge strain on us financially because we already have been living paycheck to paycheck, so to go two months without any paycheck required nothing short of a miracle, and God provided for us. And we are so incredibly grateful for that!
A week after Erin was extubated it was Abbys turn to be extubated. She didn't have any belly issues when she was extubated and did so wonderfully and uneventfully. It wasn't until a few hours after Abby was extubated things went south. During one of Abby's hourly neuro checks the nurse noticed that Abby's one pupil was blown and not reacting. Again, panic. The room filled with people within a matter of minutes. No code bell, but was basically the same deal. The only problem was that they needed to take Abby down to CT, although moving her was precarious at best. So they did an emergency reintubation at the bedside while she was wide awake. I stood in the back of the room and watched, cried, and prayed. Feeling helpless was the new normal and I hated it. I wanted to do something, anything but I couldn't. And the worst part is everyone keeps asking if you are ok. Thats when you know things aren't good. When you have person after person asking if you're ok, if they can get you anything, trying to hug you or pat you on the back to offer some support. It's moments like that were you just want everyone to go away and leave you alone. All you want to do is will your child to get better because that is all you can do.
There are times in your life when you lean on God more than others. I have never leaned more on God than in those moments. The moments when there was nothing I could do but stand helplessly in the background and watch as a massive amount of people were working on your child right in front of you. Just thinking about it brings me to tears and its been a few months. I have had different people tell me that I just need to lean on God, that if I did that more I wouldn't be so worried, or upset sometimes. But let me tell you, He is the one that kept me standing in those moments. The moments where I felt like I would crumble into a million pieces. I could have had anyone standing next to me telling me anything and it wouldn't have helped. I have never known that kind of dependency until I literally felt like I couldn't stand. Like my heart was outside my body and I just turned into a shell. But God is good, and he keeps me standing every day.
They got Abby reintubated and down for yet another STAT head CT. They gave her meds to paralyze her and knock her out so she wouldn't move or know what was going on (another thing I hope you never have to watch, my friends here who have children at CHOP who have seen their kids vexxed know how horrible it is to see your child unable to move even if they wanted to). Again, another CT scan where I sat in the hallway and waited for them to come out. I sat in the hallway and cried, prayed, and just waited. She came out and yet again another miracle. Everything was fine and again looked better than the last time. She was extubated the next afternoon and stayed extubated after that.
About a month after the girls were separated they were transferred out of the PICU. To say I was amazed was an understatement. They were both awake and could move all four of their limbs. Granted they each have a weaker side of their body, but were able to move everything, something we didn't know would happen or not. They were getting physical therapy, occupational therapy, and speech therapy 5-7 days a week. They both were on full NG feeds and Erin was starting to try to take things by mouth. They were ready to be out of the ICU!
They were moved back to the floor they were on before they were separated. We even went back to the same room. It felt like we were back home. The PICU was amazing. The doctors and nurses there were INCREDIBLE! There are so many I will never forget. They kept our children alive. They nursed them back to life. The surgeons do a huge part, but the rest of the team is so important as well. I watched the ICU teams work like a well oiled machine. When things were unstable, they stayed calm and made things happen and got things done and got answers. We will be forever grateful to them. But going back to the 4th floor was like a big family reunion. Everyone couldn't wait to see the girls and "relearn" them. They weren't the same little girls that left that room. They were independent of each other. They were still recovering, and had many issues. Both girls have what are called "subclinical" seizures, meaning that you can't see when they are happening unless they are hooked up to EEG. They were still being weaned off some sedation meds, and they were going through slight withdrawls, Abby was still getting the hang of breathing on her own and getting rid of the secreations that had accumulated from having the breathing tube, and they were both still in a little bit of pain. So, it wasn't the easiest transition for me. I was used to the ICU where everything happens fast. You need portable Xray and it is there within the half hour, on the other floors it could be a few hours. But I had to remind myself they were ready to be there. They were ready to be out of the ICU and needed some time to rest and gain back their strength. Not too long after we moved back down to the 4th floor Abby started having some issues.
During PT one day Abby seemed to be obviously seizing. Her whole body was tremoring. My mind instantly went back into ICU mode, but things weren't moving at the ICU pace that I was expecting. Everything seemed to take forever. Every few minutes her whole body would start shaking and she would start screaming and there was nothing I could do but sit and rock her and pray that these episodes would stop. Finally after talking with lots of people, they agreed to get a CT to make sure that everything was ok in her brain. I felt in my gut that this was the right thing to do and had been pushing for it all day. Not even an hour after she got the CT our neurosurgeon was at our door. When the doctor shows up that soon after a scan it is never good news. My heart sank as I went into the hallway for him to show me the scan. When he pulled it up I could see a white spot right away. Abby had had another bleed (thankfully it was in a place that had already had damage so it didn't do any further damage than what had been done during surgery). The bleed was most likely something that happened because she was going through what they called autonomic storming. Basically her brain was trying to heal and was having trouble doing so, and because of that, it was getting agitated causing these tremors and fevers. Because of that we think she got this new bleed. So, back up to the PICU Abby went while Erin stayed down on the 4th floor.
This was the first time the girls were split up. And by split up I mean 3 floors between them. I cried some tears that day and then told myself it was time to put my big girl pants on and keep moving forward. Erin needed me because she was healing and becoming more and more aware everyday, and Abby needed me because she was still sick and needed some extra loving. It was tough bouncing between to places. Trying to decide who needs my attention more and why. My heart was torn in two. Being a mom of twins is a challenge that I wasn't fully aware of yet. When the girls were conjoined they were always in the same place, when I saw Abby, I saw Erin, and vice-versa. So having them not only in two separate beds, but on totally different floors, that was a HUGE adjustment for me.
Thankfully Abby was only in the PICU for about a week. She got the right combination of meds and was a new baby. She was better than she was before the bleed and she looked like she was ready to take on the world. So thankfully she was able to go right back down to the room with her sister and every day they seemed to get a little bit better.
During this time they had their birthday. What a day. These little girls have been through so much, to say I was proud on that day was an understatement. Riley and I couldn't be more proud of these incredible little girls. They have such fighting spirits and yet they are so sweet and happy and willing to love anyone who gives them a smile.
Shortly after their birthday Erin went over to rehab, and then only about a week later Abby was able to join her. Rehab is such a wonderful place. We were sad to leave the friends we had made on the surgical floor but we were so excited to embark on this new part of our journey! The last step to going home!!
In rehab the girls had about 4 hours of therapy a day. 1.5 hours of Physical therapy, 1.5 hours of Occupational therapy, and 1 hour of Speech therapy. All of the girls therapists have been incredible. They are literally angels who are helping our girls grow and learn and blossom. We have seen the girls change right before our very eyes. Everyday they are doing new and exciting things. Watching their eyes light up as they relearn a skill or learn a brand new skill. Watching them sit up to play with toys, learning to roll over to their belly and lift their head up. It has been so amazing. Its watching a miracle unfold right in front of your eyes. They are working so hard and it shows!!!
During our rehab stay (which started around mid August) the girls have gotten sick quite a few times. How do they get sick you ask. Well the girls weren't really used to being up and about. Yes we would take them on walks when they were still conjoined but now they go all over the place. They take walks, they go down to the PT, OT gyms. They get snuggled by lots of nurses and aids (they weren't able to be snuggled before). So even though everyone is really careful they just aren't used to being exposed to everything like they are now. So their little bodies are getting colds and sicknesses. It hasn't been easy. Abby has been transferred out of rehab a few times because of it. Each time it is heart wrenching because I know it is a setback. Whenever they aren't in rehab getting their therapies it is a set back as to when we can go home. And poor Abby just can't seem to catch a break. She has had a respiratory virus 3 times (Erin twice, me once), Erin had the flu (Abby and I escaped that one thank God), and then just this past week Abby got a weird blood infection that caused her to go into septic shock, landing her yet another stay in the ICU. This last one scared me I am not going to lie. She was really really sick for a few days there. She got 2 CTs, an MRI, a bunch of spinal taps, and every type of blood test in the book, and they still don't know where in her body the infection was coming from or how she picked it up. Thankfully it had nothing to do with the fact that she had been conjoined. It was just a random fluke that could happen to anyone. But go figure it had to happen to miss Abby.
On another wonderful note.....on
October 1st 2017 after 435 days Erin Christine Delaney
She is now staying with me at the Ronald Mcdonald House and LOVING it! It has been quite the transition that has had its scary moments, but thankfully I have wonderful family members who are super encouraging and helpful. My mom has been staying with us to help me get Erin to all her appointments and therapies (since Erin still has to do all of that while Abby is in inpatient). And she takes Erin for walks and such so I can spend some one on one time with Abby. I also have some wonderful friends at the Ronald McDonald house who are there if I need another set of eyes of some encouragement. The first few days I was by myself (Riley is at home trying to find us a house and isn't able to take the time off work right now because we are still working out mortgage stuff) and they were just a phone call away and so incredibly helpful.
Abby still has a little ways to go till she is able to be discharged. She has a little trouble managing her secretions so she can have a little trouble breathing sometimes, but it is getting better every day (we will have home nursing when she is discharged). And she also had surgery on Thursday to get her gtube placed (Erin got hers right before she was discharged) and will hopefully be headed back to rehab very soon. She is recovering well, but surgery is never fun. We found out some of her anatomy wasn't in the correct spots so her surgeon moved things around a bit and did a tupet fundoplication. Hopefully only a few more days till she can head back to rehab. She then needs a few more weeks of rehab and then hopefully, God willing, we will be headed home for the holidays!!! We will hopefully be able to spend Thanksgiving and Christmas at home this year and we are beyond thrilled about it! Granted things happen and I can't say for sure that that will happen but Erin is already discharged and that's half the battle. So now all we need to do is get Abby discharged and we will be headed back to good ole' North Carolina!!!
Thank you so much for those of you who stuck with us through this time. I know we took a while to share pictures and share more of the girls story. We just wanted them to be well, and the stress to calm down before we let the world back into our lives. It's been tough sitting at their bedsides hoping and praying that they would make it. There were many moments where we just needed to be a family without any outside input (and let me tell you, everyone has something to say about everything). So we appreciate your patience and understanding. We were just trying to do what was right for our family. And there were several times we were just a day or two away from releasing pictures and Abby would get really sick, or Erin got the flu, or I was in the middle of an insurance disaster. We wanted to be ready and able to answer questions and do interviews and share our girls with you once everything had calmed down with their health. You all have been wonderful! From now on I will be updating my blog frequently as I was before so that you can all watch these incredibly wonderful girls grow and thrive. Our family has been blessed more than we could have ever imagined. God gave us the right hospital, the right surgeons, and the right hospital staff to make sure that these little girls had the best chance. And we couldn't be more grateful to Him for that!
So many people have asked how they could help. Below the pictures I posted a link to our gofundme page. Those who have donated have helped fund my stay here in Philadelphia. Yes, the Ronald McDonald House is wonderful! But there is still parking at the hospital, lunch, and all other necessities that I need. It has also helped make it possible for Riley to visit. Since the girls have been in the hospital, Riley has taken quite a few months off of work altogether which makes fiances incredibly hard. But because of you all we have been able to keep up with the bills and still have Riley visit. Now we are working on trying to buy a house and give these girls all the things they deserve. They still have a long road ahead of them with more surgery to happen most likely in the spring. And we will be back in Philadelphia for a month or so. So thank you for all that you have given to help our family make it through this. We can't wait to be in a place someday to help a family on a journey like ours.
There is also an Amazon Baby registry link there as well. Everything that has been purchased from that has been so helpful and provided many smiles. We never had a baby shower because the doctors had told us they weren't sure how things were going to end up. So the amazon registry has been like the baby shower we were never able to have and we so appreciate it!!! We are seriously so humbled at how generous you all are. I know I have said it before but God has blessed up with such wonderful generous followers and we are so grateful for it! You all have made such a difference in our lives!!
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!