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.
First of all we want to wish each and every one of you a very merry Christmas, and a very happy New Year!!! We cannot believe that the holidays are here but are loving every single second of it!!
This past month has been one of LOTS of adjustments. We have feed changes, med schedule changes, sleep habit changes, and so much more. It's like bringing home a new baby times two, plus add in all the weird medical stuff and your in for quite the transition.
We had all the girls therapy evaluations done this past month and will start up therapy in the beginning of January. Needless to say that having two kids who require 3 types of therapies, means we will be there every day of the week. It's a little overwhelming to think about but I know we will get the hang of it and figure out the new schedule once we are doing it.
The girls are growing in leaps and bounds! They are doing new things every day. Erin is crazy and gets where she wants to go by rolling. If you turn around for just 10 seconds she gets to the other side of the room. The other day I found her under the Christmas tree pulling the lights off. So that is a fun new things to get used to. Abby is soooo close to fulling rolling over. She can roll from her back to her belly but can't get her arm out from underneath. Once she figures that out she will be on the move! She also has just in the past few days become so much more vocal! She used to be very quiet and would only make noise when she was upset, but she has started to babble and make noise when she wants attention which is a huge improvement for her. It is so wonderful to see them at home and getting comfortable.
Riley and I are also doing well. It has been difficult to adjust I am not going to lie. We didn't realize how hard it would be to get back up on our feet after getting home. We are realizing his job doesn't pay enough for us to live on so living with my parents is seeming to be the only option for the moment. We so badly want to get into our own space and let the girls have their own space. Right now all four of us are in one room. And let me tell you...it's tight. Don't get me wrong we are so grateful but it's still so difficult as new parents to share your space with not only your new kids, but also your parents (inlaws) and siblings (sister-in-laws). We are not ones to ask for help but in this season of our lives we have to. We need to figure out a way to be able to get into a two bedroom apartment and still have enough money to buy food and pay for utilities and we just can't. If you all could help us get on our feet we would be forever grateful. Our gofundme account says we have "x amount of dollars" when in reality that was what sustained us throughout the past year and now we are struggling. The money that was already donated covered all the time that Riley had to take off of work, it covered my lunch at the hospital every day, it covered parking at the hospital everyday. There were a lot of expenses we didn't realize we would have. And we are so grateful for those who donated and helped us through that time. But right now we need help. We need to get on our feet and give these girls what they deserve. If you feel in your heart that you want to help us we would be ever so grateful, but please don't feel obligated. This is the most humbling thing to have to do. You want to think that you can do it all on your own, but there is no book to go by for this kind of thing. And in this season of giving we know God is going to take care of us.
Things are different than I expected them to be being back in the "normal" world. I am so so grateful for the girls and that they are healthy and growing and thriving! But that doesn't mean it still doesn't hurt my heart some days. The other day my mom sister and I took the girls to see some lights that blink to Christmas music. It was so fun to see the girls watching the lights and kicking their feet and smiling. I was really enjoying myself. We were seeing lots of other families doing the same thing when I heard the mom behind us talking about her little guy who was bopping around us. I heard her say how old he was and found out he was the same exact age as the girls. My heart sank a bit. Since I have been home I haven't really had any one to compare the girls to. You don't ask a random stranger in the store how old their kid is so you can see if they're the same age as your children unless you've been chatting with them for a little bit. So to hear her say that and then watch her son made my heart sink just a little bit. He was so happy and full of life. Running around, dancing, chasing his sister, and calling his mama. He looked eons older than the girls, when in reality they are the same age. It hurt my heart because of all the things the girls could be doing and what they're missing. I know they're happy and that they don't know what they're missing but my mama heart knows. There are days I still wonder if they'll ever walk, or fully talk. We just don't know. I can't let myself go there because there is nothing I can do to change it, but I really hope that they have all the opportunities as any of their peers. I know it will get easier the longer we are home and the more used to having "medically complex" kids I get. Being in Philly everyone has medically complex kids, so everyone understands. Here it's just different and not the easiest.
Our days are different than most. They consist of multiple trips to the pharmacy a month, tons of syringe washing, lots of formula mixing, lots of puking, lots of fussiness, sleepless night because of giving medications, and and endless cycle of beeps from the feed pumps. We wouldn't trade our girls for the world, but we are still adjusting and getting used to our normal.
God has given us two miracles. And this Christmas season we look back to where we were last year and see how far we come and are so so grateful. We still have many challenges ahead but are willing to take them head on if it means making a life for our girls!! We are so grateful for each and every one of you! And pray that you are richly blessed this new year!
This Thanksgiving has brought a whole new meaning for our family this year. If you haven't seen the posts of the articles, this past monday, November 20th, Abigial was finally discharged from CHOP after 485 days!
As I look back at those 485 days I really don't know how we made it through. It took so many prayers and well wishes to get us through each and every day. When we found out almost two years ago that Riley and I were expecting conjoined twins, we didn't know if we would be able to meet our children, let alone bring them home. Then in June once the girls were separated we didn't know if we were going to make it home with both of them. Now fast forward to this past Monday, we were able to walk out the Hopsital doors with two healthy little girls!!
We are beyond blessed to have come out the other side of the journey and still have both of our children. being thankful doesn't even sound like a strong enough word for it. We are so grateful that God decided to give these little girls to us and that we have the privilege of caring for and loving them every single day.
Walking out those doors and putting the girls into the car was one of the most surreal and happy moments of my life. To know that they were going home was something I had only dreamed of! The emotions that you go through in the moment, there is nothing to compare to them. You are BEYOND excited and happy and grateful, and at the same time you are terrified and worried and stressed. All I could do was cry. As we pulled away in the car Riley and I looked at each other and said we finally did it! Through tears we looked at each other and said we are finally going home as a family!!!
The drive was a little crazy to be completely honest. Abby had never been in the car before so after about a half hour of our 10 hour drive, she started to get cranky and fussy and almost scared seeming. So Riley ended up having to sit in the back seat. But the view in my rear view mirror was one that I will treasure forever. As long as Abby could see her Daddy she was happy. So would just stare at him and when he would look back at her she would smile. It was almost like she was saying thank you for getting me out of there and don't ever leave me again. She was giving him those total lovey dovey eyes that just melt my heart. She was beyond happy to have her daddy there with her.
We ended up having to stop every hour or so to give meds, change dipaers, do nebulizing treatments, but at 10:30 PM we made it home to North Carolina.
Now when I say home I mean my parents house. We are so grateful that my parents opened their doors to us. Over the past 16 months Riley and I had given up our apartment because we could not afford to keep it due to the circumstances, all the travel expenses, going down to one income, and all the time Riley had to take off work to be with me and the girls. Our plan was to try and save some money and buy a house when we were ready to come home. Little did with know that mortgage companies frown upon FMLA leave and don't seem to really consider it a thing. So because Riley spent a total a few months over the past year with the girls and I and not working, we were denied a mortgage. Which leaves us in a tough spot because rent in our area is more than we can handle right now given the circumstances. So my parents have graciously opened their doors to us. They even lent us their minivan to drive home in because my car we found out is just too small for our family and everything we need to take with us even for a trip to the grocery store. So we are also trying to figure out how to get a larger vehicle.
Sometimes life can be a total crazy mix of good and bad. Even though things are tough we are still so grateful for what we do have. We have family, our girls, friends, and followers who have supported us from the begining and we are so grateful for each one of you!
These past few days at home have been glorious! The girls seem to come out of their shell more and more every day. Watching my sisters spend time with the girls is also something that makes my heart melt. They were only able to visit a few times while we were at CHOP because they all go to school here in NC. So to watch them get to know the girls is incredible.
I also have loved watching my husband turn more and more into a daddy. The love that comes from him for his little girls is something that makes me fall more in love with him everyday. Between diaper changes, putting feeds up, cleaning feed bags, giving meds, waking up at 2am to give a half hour breathing treatment....he does it all and does it all in love. I couldn't be more grateful for the man that he is and the daddy that he has become.
Please still keep us in your prayers. Being home comes with a whole new slew of challenges along with the happiness. There is ALOT to keep up with. The girls still have issues with different things are require lots of meds. We have to give meds every other hour during the day. And its exhausting. We also have the stress of trying to figure out some sort of living situation. My parents are wonderful offering up their home to us, but we really do want to have our own place and a place the girls can call their own. Right the girls have their own room but their share it with my sisters when they are home from college. We so badly want to give the girls all that they deserve and to have their own safe space is something I want so badly for them. We are just a little tight here right now and don't really have any options. Pray that the Lord opens a door of some sort and gives us wisdom in how walk through those doors. Pray that we also can find a new vehicle. Neither my car or Riley's car really works for having the girls. We can fit their car sets but their stroller alone takes up my entire trunk and leaves no room for anything else. So a different car is a must. Especially with so many different appointments for the girls all the time. And on top of everything else we found out that now that the girls are out of the hospital they are not qualifying for the health insurance they've had. Insurance has been the most difficult thing I have ever dealt with. So at the end of November the girls will be bumped off the insurance they are on. Please pray that we qualify for the new insurance we are trying to get for them. If this doesn't work I am not sure what we are going to do because we cannot afford the amount of copays the girls would have with the amount of appointments they'll have along with surgeries and trips back the Philadelphia. We know that God has provided for our family in so many ways and we know He will continue to do so moving forward.
Thank you so much for all the well wishes in us going home! We had a wonderful Thanksgiving and are so excited to start the Christmas season. Starting to day with going out to get a Christmas Tree! We pray that all your families are truly blessed this Holiday season! We cannot wait to share this season with the girls and our families!
,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!!
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
Sorry it has been a little while since my last blog update. My computer has been abnormally slow so anything getting done on it has taken quite a bit of patience (and usually by the end of the day I have used up much of what I have). But at the moment it is working so I am going to do as much as I can before it freezes on me.
The girls are doing well! Their skin expanders are getting very very large and they are starting to be annoyed with them, but they have been doing so incredibly well! They are still doing physical and occupational therapies throughout the week although it is getting harder and harder for them to hold their heads up and turn them in any way because of how heavy the expanders are. And the girls are at the age now where they just want to start exploring and I can see the frustration in their eyes when they want to grab a toy or are trying to roll. It is tough but they are troopers. I just keep telling them that so soon they will be able to try and do these things on their own and it will be so much easier! The girls only have a few more expander fills before surgery happens and that blows my mind.
Riley is here (I am trying to get him to post a blog update on here so you can all hear from him, hopefully I can encourage him enough to do so)!! He was able to come and surprise me for mothers day and have some time to enjoy the girls before surgery. He always comes when the girls are having procedures of surgeries so it is really nice for him to be able to be here and just enjoy some time with three of us before all the crazy happens. He was granted FMLA leave which is wonderful! But we did just receive his last paycheck and that is a little unnerving. We are trying to be so careful because we also need to try and save since when Riley goes home we will be trying to buy a house. We don't have much of a down payment saved up but we are hoping and praying for a miracle. God hasn't let us down yet!!!! Everything just has to happen in HIS timing. But keep that aspect of our lives in your prayers as we so badly want to give our girls the very best that we can. I dream of the day that I can put their room together and have a happy warm place that they can call theirs. I've been dreaming that since the day I found out I was pregnant (I think every mothers dreams about that when they know a baby is on the way). I long for the day when we are in a home back in North Carolina, away from the pokes and the prods and the millions upon millions of vitals.
With surgery this close Riley and I are experiencing so many emotions. It is a terrifying thing to send your very well developed and normal seeming children, through the OR doors, now knowing if they will come out the same or if they will be completely different. I think that is what scares me the most about all of this. The doctors seem to be confident that the girls will make it through surgery, I just know that the brain is a complex thing and there are so many things that can go wrong during and after surgery. We are enjoying soaking up all the giggles and smiles we can as we know they will be gone for a while. We are loving hearing all the little sounds and the "dada's" that they have just discovered. Even the miserable teething is something that I am so thankful for because it is "normal" for a baby to be cranky when they teethe (Erin has her first tooth!!!!) All these little things that sometimes people take for grated or would frustrate or annoy some we are trying so hard to enjoy and soak up because the girls will be gone for a while and we know that during that time we need to have something to hold onto.
I am also having a difficult time dealing with the fact that they are going to be "normal". And now I KNOW that sounds crazy to some of you. But I have gotten so used to them as they are and how special they are. I am so beyond proud of them for overcoming all the obstacles that they've faced. Yes, some people will stare as we walk down the hallways, but most look in wonder and say what amazing little girls! I am going to miss that fact that people aren't going to be able to straight out see how incredibly special and strong these little girls are. Once they are separated they will look almost "normal". Yes they may have scars and such but nothing that will make people say "wow those girls were conjoined and now they're not that's amazing". It is such a weird thing to process and deal with. We love those little girls so incredibly much! And if it wasn't necessary for them to be separated (if they weren't they would be bedridden the rest of their lives) we wouldn't. Because to us they are perfect. I don't expect many of you to understand (some I know will) but it is just another thing that I am going through as the surgery days draw near.
We wanted to thank everyone that has been sending us things off of our Amazon registry for the girls. We never had the chance to have a baby shower and since there are quite a few things we need before we are able to have one we really appreciate the help this way. It would be overwhelming to try and get everything we need to get these girls home on our own. You all have been so generous and we will never be able to thank you enough! We seriously cannot wait till the day that we are able to help out another family in a situation like ours. To make someone else feel that way that you all make our family feel is something that I literally cannot wait to do!!!
I may not be updating as much in the near future because things are going to be getting crazy. I will try my very best, but we are also trying to be so careful because we are generating some media attention. We want to be able to focus on our girls and therefore we haven't posted dates or anything like that in fear or being bombarded as they days get closer. If you are involved with any type of media outlet that is interested in our story please contact Ashley Moore in the CHOP PR department. She has been helping us since day one and is our go to when it comes to this. She will be able to answer your questions regarding our plans with the media. Thank you so much for understanding!! Her information is as follows...
Senior Public Relations Specialist
Riley and I are also so overwhelmed that our facebook page has over 10,000 likes on it. Because we have so many people liking the page daily I will post the links to the other pages that we have, to keep everyone in the know. We so appreciate each and every one of you. We appreciate the thoughts, the prayers, the cards, the gifts, the donations, etc. We are so incredibly blessed and you all figure out ways to make our day that go above and beyond what we ever thought! Thank you again so much!!!
-For the girls surgeries to go smooth and to have a smooth separation
-For the surgeons, doctors, and teams to have wisdom in how to care for our girls
-For Riley and I as we are about to face some of the hardest times in this journey
-For our finances are we are starting to get ready to start the process of looking for a place to live
-For our families as they process and deal with the girls being separated as well (they are such a wonderful support system who all love the girls so much!
-For sleep for myself and I and having a harder time getting some now-a-days
-For the girls skin to stay healthy and stretched until it's needed
-For the girls to have a quick and speedy recovery, that the pain they feel will be lost in their memories and they will be back to themselves quicker than we are anticipating.
-For Riley and I as the girls will be transferred to yet another floor with a new team of doctors and nurses after surgery. I have a hard time when it comes to change in this place and am very nervous about being under incredible amounts of stress and in a new environment with a team that I am not familiar with and who are not quite familiar with the girls.
THANK YOU SO MUCH FOR YOUR PRAYERS! THEY ARE FELT AND THEY MAKE THE DIFFERENCE!
Tomorrow will mark 300 days that I have been in Philly. Come the end of June it will be a year. Lately the number are getting to me. Counting up the days we are here and counting down the days till surgery. 300 days is too long to be away from home. 274 days is too long for babies to be in the hospital, and the fact that there still is no real idea of when we will be home is so daunting. Yes we have surgery dates, and yes the prognosis is "good", but no one really knows how the girls will be after surgery and how long it will be till they get, or should I say we get to go home.
Having Riley here is so wonderful. Watching him with the girls fills my heart to overflowing. But it also fills me with such a sadness. Knowing the pain he must be feeling since he is missing so much. We try to fit so much in when he is here but it doesn't change the fact that he got pictures of their first smiles, got a video of some of their first giggles, he wasn't there to feed them their first spoonful of baby food, or to help them roll themselves over for the first time. I can see it in his face how much he misses them and wishes he could be here for all those things. I can't imagine what he goes through on a daily basis, and especially on the girls' hard days. The days Abby stopped breathing, the days the girls had horrible procedures, the surgery day that he couldn't be at because it was such short notice. He is one of my heros because he puts his family above his own desires. He knows that if he were to come and stay here, we wouldn't be able to have anything to go home to. And that is so incredibly important. But it doesn't make him having to leave any easier. We miss him every second he is away. Thankfully he is able to take advantage of the Family Medical Leave Act and will be able to be here for over a month starting the end of may so he can be here for the girls separation and few weeks afterwards. Granted FMLA doesn't include being paid, but he will have his job waiting for him when he goes back home once the girls are stable. So that is fantastic news and may 19th can't get here soon enough!
The girls are doing well. The skin expansion process is going well. Minor hiccups here and there but nothing crazy, Thank God! Your prayers work and we are so grateful! We spoke with our neurosurgeon while Riley was here last week and he is hopeful that the girls will make it through these next two surgeries and come out on the other side as two little girls who are no longer attached. There will be three teams of neurosurgeons involved along with our plastic surgeons, anesthesiologists, and so many others. We are incredibly nervous, but we are confident in the team. It is such a surreal though that within the next two months the girls will be separated. Like I said 300 days is a long time to be waiting for this. And it is more than 300 days that we have been waiting for this one event. On March 11th 2016 we found out that the girls were conjoined, that was 410 days ago. We have been waiting for this for over a year. So much worry, hope, sleepless nights, tears, and joys are going into this one day. This one day will change not only Abby and Erin's lives but also Riley and mine as well. I have to give it to God every second. There is not a second that goes by that I am not thinking about it. And I know that if I don't give it to God every time I think about it I am not going to make it.
Sending your children in for a surgery like this is something I would hope and pray those reading this will never have to do. We don't take this decision lightly. We know the risks, and we know what the benefits could be. But that doesn't make it any easier. These little girls have already been through so much in their little lives. I cannot wait to snuggle them for the first time as their own little self. Holding them is tough. They usually just lay on my lap, or it is uncomfortable to hold them and within 10 minutes its just too much not only for myself and whoever else is helping me, but for the girls as well. It is just not comfortable to be held. The other night as the girls were falling asleep I couldn't help the tears falling down my cheeks. They were fussing like they normally do, but were little more because they are teething and just aren't very happy in the evenings from it, especially Abby this night. And as I watched her fuss every ounce of my being was screaming "pick her up and snuggle her" but I couldn't. I couldn't hug her and rock her to sleep. I couldn't give her that little bit of comfort. And it broke me for the umpteenth time. I am so ready to be able to hold my babies. But getting there is so incredibly hard. It's a constant battle between hope, and fear. And only God can make that battle stop and like I said I try and give it to him every time I think about it. The outcome is already written and there is nothing I can do to stop it from happening. He already knows. I just have to be willing to follow His lead because He knows what He is doing.
I know I ask for prayers so often but please keep praying. We need that constant flow of prayers. The girls have a CT scan coming up around the 13th of may. They will make another model of these scans so they can have a very recent 3D model of the girls vascular structure to prepare for surgery not even two weeks after that. Riley will be here on the 19th of May. Thank God he will be here because going into this is very scary. Having him here to sign all the paperwork and sit in on all the meetings will be more helpful to me than anything.
The girls are a little stuffy right now, pray that is is just teething and no sickness. Sickness could push our timeline back by months and I am so terrified of that happening. So please please please pray against sickness. I don't know if I could handle an extra 6 weeks because of the girls getting sick.
Pray for our surgeons and doctors as they go into this. From what I understand this is the first time CHOP will be separating craniopagus twins. If they have done it before it was a very very long time ago. I can only imagine how our doctors and surgeons feel. They are not only our team, but have become our family. I can tell they truly care about the girls. They are incredibly qualified to do this and I have faith that their hands will be guided by the ultimate physician. So pray for them as this must be an incredible weight to bear, knowing you will be changing lives.
Pray for our family that we can make it through these next few months financially. If things end up going a little funny Riley could end up having to be here longer. Like I mentioned before he will not be getting paid for most of the time that he is here so we live off of the generosity of others. God always makes a way and if this is where Riley is supposed to be, God will make it so.
We so appreciate all of the support we receive. The notes I receive in the mail lift my spirits so much! I know I have posted the address of the Ronald McDonald House, but if anyone were to want to send Riley an letter please let me know and I would be happy to give you the address where you could send that as well.
We are so blessed. Even though this journey and excruciating some days, we know how blessed we are to have two healthy little girls who despite the odds are doing so well. They truly are little miracles and we couldn't be more grateful for them!
So I was scrolling through facebook and came across a post by Audrey Roloff. I love reading her posts and her blog, they are always so uplifting and filled with hope and joy. Today her post really struck me. It said, "I was recently reading a devotional that I receive via e mail, and I was struck by these words: "I tell you honestly that it is not your ability that matters; it's the strength of your faith in My (God) ability to do what you cannot. You must stop relying on your own efforts and common sense and begin to rely on Me..." I feel there are so many days where I try so hard to rely on myself. And those days are normally not good days. So many times people will ask "How do you do it?" or will say "You are so strong". But in all reality it isn't me. There is no way I could make it this far on my own. These is a verse that talks about how His (God) power is strongest when we are the weakest. And that is the story of my life right now. I wouldn't still be standing if it weren't for the all knowing God who comforts me every single day. He knows the outcome, He knows the process, and He knows every little bump along the way. So why not trust him. I want to challenge you all to do the same. We each have varying degrees of needing to rely on God in our lives, whether that is getting through the day with sick kids, or passing an exam, or getting through the work day without stressing, or dealing with the death of a loved one, or like me watching your children fight the hardest fight of their lives. We all need to rely on God and realize it is Him at work through us, it is not us on our own.
That all being said things are pretty status quo here in the Delaney girls' world. We are expanding right on schedule and everything seems to be looking good so far. The girls are handling everything in stride and are such little troopers. One weird thing that has started to happen is that Abby seems to want to choke on her spit ups. We don't know what has changed to make her do this but it has happened twice so far that she will go to spit up and get "stuck" so to speak and stop breathing. I am not sure if it is related to her reflux and it hurts and so she bears down and stop breathing or if she actually gets stuck. It is pretty much a guessing game. But like I said it has only happened twice, but those are the two scariest moments I have ever endured and I pray that I never have to go through it again. If Abby were to stop breathing Erin would also have ramifications since they share blood supply. So that thought alone terrifies me. My knees go weak and I feel like the world moves in slow motion. But God willing she doesn't do this again and things will keep moving smoothly.
Riley comes to visit for Easter next week and we are BEYOND EXCITED!! He hasn't been here in 6 weeks and we are so ready to have him back. A lot of the reason he is able to take a week and a half off is because of all the wonderful donations we have received over the past few weeks. We are blown away by peoples generosity. It makes it so that we are able to be a family under one roof, even if just for a little while. That means the world to us. We are also going to start trying to save a little bit so that we can buy a house for when the girls and I come home. I so badly want to have a nice house to bring the girls home to where they have a nursery and a play room. One that we can stay in and that the girls can grow up in. God willing we can save enough up that we won't have an insane mortgage. But we would much rather a house than having to move into an apartment. There isn't enough room at my parents for us all to be there so God willing we will have a new place to go home to before we actually go home.
If anyone is near the Tri-State Area (NY, NJ, PA) there is a fundraiser happening this Saturday for our family. Bounce houses, snack bar, pizza, rollerskating, animals, pony rides, and so much fun for the whole family! They will also be having a bake sale going on! It is $7 admission to play. I worked there for a few years and the staff are like family. We so appreciate what they are doing for us. It has even been broadcasted on the Sound of Life Radio Station. Please tell your friends! We will also be skying most likely a few times during the day to say Hi and be a part of the fun! There is a facebook events page you can get more information from. I will post the link below.
Please keep us in prayer as we get closer and closer to separation! We are trying to get as much fun time in with these girls before things get hard again. We so appreciate all the prayers and donations. We wouldn't be able to do the things we have without them. We are incredibly blessed.
Also please say a prayer for my family as my grandfather passed away this morning. We are sad that he never had a chance to meet his great grand babies, but I know he is watching them from heaven. We are happy that he is at peace and no longer in pain, but it is still sad since we will miss him very much!
I can't tell you how many times I have sat down to write a new post and never seem to finish it. Well today I am determined.
Abby and Erin are doing wonderfully. They have begun getting their expanders filled to stretch their skin, and let me tell you they are amazing. They cry for the first second or two of the needle going in, but aren't quite phased by the actual skin expansion. I know that this is still the very bringing and that it will most likely get harder. But for now I am beyond thrilled at how well they handle it. The girls unfortunately had to have another surgery about 2 weeks ago since one of the ports from the expanders had moved and wasn't able to be accessed. So they went in and put it back where it was supposed to be. Because of this the girls have only been able to have 2 of the 4 balloons filled until today where all 4 were expanded. It was unfortunate but we made it through and are back on track.
We now have dates for the next surgeries. There will most likely be 2 between now and the separation. We will have one surgery in the end of may to do some separation work, and then a few weeks later in June will be the actual separation. I am reluctant to release any dates yet since things change so easily around here. We have hope that these days seem to stick, but there is always that possibility.
The girls are growing in leaps and bounds. They never cease to amaze their daddy and I. Developmentally they are right on target. They are babbling, playing with toys, engaging while books are being read, they are trying to mimic words, they are taking baby food, and Erin is able to roll, but Abby is just not feeling it yet (its a little chaotic when Erin attempts lol. I am so incredibly proud of them and how far they have come. All of the doctors, surgeons, and nurses are very happy with where the girls are right now.
The thought of surgery coming up is getting more and more real everyday. It is honestly becoming scarier and scarier. I try so hard to not let all the possibilities of what could happen creep into my brain. But they are there and they are so so real. The girls share a portion of their saggital sinus, which is a very large vein in your brain that drains blood down to your heart. And we have known from the beginning that this is a pretty big deal. Of course they won't know for sure exactly how it is connected and exactly how much until they get in there. The girls past surgeries have been more "superficial", but this next one will be much more significant. Yes, the girls have had many many scans done to see what is going on in there, but there is only so much you can see and how accurate they are. Yes, the girls aren't as connected as they could be, but it still scares me to death knowing that really anything could happen. We could go home with two completely happy healthy girls, we could go home with two happy girls have that have different limitations, we could go home with only one little girl, or possibly loose them both.
The thought of loosing the girls is one that literally makes me feel like I am going to puke. But it is something I am working through. I know I have said it time and time again on here, but God has a plan and a purpose for these little girls. He knows every breath that they will take, even if that means only a few months more. I have to rest in the fact that he has already decided what their outcome will be, and Riley and I are just along for the ride. You don't realize how real your faith gets until something big like this happens.
I have always been the good girl. I grew up in church, never really got in trouble, and tried to do everything right. Like I said I grew up in church, and even went to bible school, but it really wasn't until recently that I realized how little I actually relied on God. From this whole experience God has shown himself in more ways than I can even go into. He has proven his love for me and my family time and time again. And some of you would say "how can she say that, she still has conjoined twins" and to that I would say yes, I do have conjoined twins. But these girls have done so much for mine and my husbands lives. We get a front row seat to a miracle. We get to watch God work in a very real way every single day. And not only with the girls but with our regular lives as well.
I am not going to lie, bills will be the death of me. This has been the most trying time of my life in that aspect. Yes, Riley is home working, but we were never expecting to have to go to just one income. And when we did it was and still is very very hard. And like I said before God has made himself very real and proven himself time and time again through this journey and especially with our finances. Right now Riley is living with my family back in North Carolina because we just could not afford rent anymore. We were just making it paying all the different bills. And by just making it I mean there was some type of financial miracle that happened every month to keep us afloat, whether that be someone sending us a check, a fundraiser being held, a foundation choosing to help us, that is how we have been getting by. I have gotten to the point where I am not worrying anymore because somehow God always provides. He sends someone in just the right moment to help us out. It is really one of the most amazing things I have seen. But that doesn't mean it is still hard, and it doesn't mean that I don't stress at least once or twice a month wondering how we are going to make it. Especially when I want more than anything for Riley to be here with us. But when he is that means that we are going to take a hit financially because he isn't working.
If there is anything that I am upset about in this whole journey it would be just that. It literally hurts me to know that Riley can't be here. I do my very best to share the joy of the girls with him, but there is only so much I can video tape and send to him. Smiles, giggles, little coos they are all so hard to catch on video. I wasn't able to get their first smile, the first time they grabbed a toy intentionally. The little things hurt my heart because I so badly want to share them with him. I seriously hate money. If it were a person I would really have to check myself because I would be bitter at it. I hate the fact the money is what keeps my husband from his family. But we don't have a choice in the matter, and it is so so hard.
Living far away from your significant other is NEVER something I wanted to do. Riley always talked about how he would have loved to go into the service, and I always said no. I never thought I would be able to handle being without the person I love. But here I am. It has been a month since I last saw my husband (other than facetime) and I hate it. With every fiber of my being. I know with all my heart that God has a plan, and I trust him, I really do, but that doesn't mean it doesn't hurt in the process. I miss him more than I ever thought I could miss another person. He is such a wonderful husband and daddy, it just seems not fair that he has to be there and us here.
Thank you all again so much for all of the support and love we receive. I cannot wait till the day when we are able to do the same thing for another family. It makes my heart so excited to think that we will be able to bless another family like ya'll have blessed us.
Time for baths for the girls :)
Many times throughout this journey of finding out I was going to be the mother of conjoined twins I have developed expectations of how I thought things would go. How CHOP would be, how my delivery would go, how the doctors would be, how surgeries would go, and so many others. I have thought about so many things when it comes to the girls. And usually my expectations are different than the reality of it all. And I feel like that happens with most things in life. We anticipate something going a certain way and then it actually happens, and it ends up completely different than you expected.
One thing that I had thought about and read about and prayed about was dealing with how other people view my children. Obviously I'm very open about the girls. In no way do I want to "exploit" them, but if some way we can reach out to another family dealing with a similar situation and give them hope or encouragement that would be our goal. So I am very willing to answer questions, openly talk about the girls, and even share pictures. To me our girls are absolutely perfect and created to be who they are. God had a plan when he decided that Abby and Erin were going to be craniopagus twins. I view the girls are separate individuals with different personalities, different likes/dislikes, and even different skills. There are even times when one of them is being fussy that I have to remind myself that I can't just pick her up like my instinct tells me to. And there have been times I have even reached for one of them and then stopped myself. That is how separate I view them already. To me they are just two little babies who need their mama.
So recently since being moved to a different floor we have been able to take the girls on walks, which we weren't allowed to do down in the NICU. On Friday and Saturday we were able to take them to one of the hospitals outdoor areas so that they could feel the warmth of the sun for the very first time. It was glorious. Watching their little faces squint as the sun shone on their little faces was a moment frozen in time. One that I want to remember forever. The wind would blow and they would gasp and then smile. It was one of my favorite moments with them so far. The feeling of being able to take the girls out with me is such a great one. Over the weekend we took them on little walks every day.
On Sunday we went to a place in the hospital where there is a big "sculpture". I say that with quotes because it is more of a "contraption" that has balls traveling through it on little roller coaster like structures that ring bells, and bounce off of things. It is really a neat thing to sit and watch. Needless to say I knew the girls would love it. What I didn't really think about was going into such a public area. Yes, we had been outside, but that was traveling through hallways and out to a patio that not many people visit in the end of February. Where this sculpture is, is definitely more of a public space. Now like I said I am very open about my girls. And I prepared myself for how people would react. But at one point I looked up from watching the pure joy on the girls faces to see people staring. Granted I have known people would stare from the beginning, but it has never really happened before since we were always "hidden". And since the girls are so normal to me I didn't think twice about it. I thought "this thing is really cool and the girls would enjoy it so lets bring them to it". I didn't think "oh man people are going to be walking down there and they are going to stop and stare at us". Not only did people stare but we also had a complete random stranger come right up to us and exclaim "wow, can I look" . I was so taken aback by this. The lack of manners. I didn't even know how to respond.
I've never been one to draw attention to myself. I would much rather stand in the background and help someone else stand in the spot light. So I have been learning slowly to come out of my shell and have a "thicker skin". Working with camera crews who are putting footage together for the girls story (that will be released after everything is said and done) has grown me in ways I could have never imagined. If you had told me even a year ago that I would be getting used to doing interviews on camera I would have said NO WAY. I've just never been that person. I've always been very cautious about how I am perceived and like I said would much rather stay out of the lime light. So to be in a public place and have people staring was so uncomfortable. I want the girls to be able to get out of their room and experience life. It is not fair that because they are different and it makes me uncomfortable that they should be able to go see the cool ball contraption. It is just another one of my expectation vs. reality battles. People will be people. I just need to try and be the best mom that I can be for these little girls. If I want to raise them to be confident and proud of who they are, I need to be just that. I need to be confident and proud that I am who I am and that I have these two wonderful little girls that I get to watch grow and experience life.
People will stare, but we won't let that stop us. We are going to enjoy every moment we have and be confident in doing so. And if someone oversteps their bounds, they better watch out because this mama will very quickly turn into a mama bear who will protect her cubs.
Pray for us as we navigate this new territory. We are also still getting used to a new team which has it's stressful moments. We are so grateful that God has brought us this far, and I know He will keep walking right beside us as we keep moving forward. Thank you all for lifting us up in prayer and encouraging us through this. If it weren't for all the support and love our family receives I don't know if we would have the confidence to take the girls out of their room. Your prayers and well wishes are felt very deeply. We love you all!!
This has been a big month for the Delaney Family. We have had quite a few new things going on.
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!