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.
We officially have t-shirts!! All you have to do is click on one of the images and it will take you to the website! Again thank you so much for supporting our family! It means the world to us! Because of all of your support and prayers our girls will one day be able to look each other in the eyes!
The back of the shirt says
"Born the same day, two gifts from above, their lives entwined, two babies to love"
So when I first found out that I was pregnant with conjoined twins, I did a lot of research. I read about other sets who have been separated and the different procedures that they have been through. I had connected with different moms who had also had sets of conjoined twins and learned about what they went through. I looked at pictures and watched documentaries. I did everything I could to try and prepare myself for what was to come. Not to say that researching isn't a good thing, but as much as I thought it would help prepare me, it hasn't.
Nothing can prepare you for the incredible heartache that you feel when you see your child in pain and uncomfortable. And they haven't even had their surgery yet! Today was just a hard day that took and emotional toll on me.
Today we found out that the twins not only needed a blood transfusion, but that they had also (unrelated to the transfusion) had been exposed to a virus, and possibly had that virus.
We had been under precaution because of this virus that the girl might possibly have since Friday, which means that anyone who went into the girls little area needed to wear a gown, mask, and gloves. Now let me tell you when you spend 5-6 hours at your child's bedside you don't want to be sweating because you are wearing all that stuff, but it was something we had to do. I think the biggest thing I hated about it was that lots of people look at you funny as the walk by. They all wonder "what is going on in that area". You just have to look away and pay attention to your situation and not what you think everyone else is thinking.
So when I got to the hospital this early afternoon there was quite a bit of news for me. Erin had been showing a few symptoms of this virus and so they had two different tests done to see if she was positive or not but that the results hadn't come back yet, and also that the girls were going to get a blood transfusion because their hemoglobin levels were on the lower side and didn't seem to be getting any higher. So with all that being said we started getting the girls ready to get their IVs.
Me, being the mushy momma that I am snuggled with my babies before they had anything "poking into them". I also was keeping them nice and relaxed while everything got ready. Now when you think IV you think "eh, no big deal, you get a nasty pinch, but then you are done". Well when you are only 3 pounds and 5 weeks old (technically not supposed to be born for another month) you have super teeny tiny veins. So teeny and so tiny that even the catheter for the IV just makes it. So Erin was the easy one, she got stuck once, cried a bit, and then relaxed and was done. But Abby was a whole different story. Abby got stuck the first time and was a champ, and even was a champ for the second, third and fourth time, but after that she was inconsolable. She was a very loud, very unhappy little girl and it broke my heart because I remember full well what it felt like to be stuck with an IV numerous times since it had just happened to me a few short weeks ago. So then they stuck her again for the fifth time, and then the sixth time. And by this time, my emotions were wearing so thin. They had already had 3 different people try to get her and for some reason no one could. So after the seventh try I just needed a little break. I was stressed, needed to pump, and just felt emotionally exhausted from trying to be calm and soothing to my screaming tiny little girl. So I took a little break to go pump and recollect my thoughts and emotions. When I got back, thank the Lord they had gotten it, but it took 8 tries altogether. I can't imagine how sore her arms and legs must have been. It is miserable! And when I got stuck it was only 5 times, I couldn't imagine 8.
So not only was this all going on, but we still didn't have the results from Erin's labs yet. So I decided to hold the girls for a little bit while we waited for those to come back, and while we waiting for the blood to come up to start the transfusion. Those few minutes were so serene and nice. I wish we could have stayed in that moment the whole day. Abby took a wonderful nap and Erin was awake but very content to just look around and chat with me.
Erin's labs, thank goodness, came back negative. Because of that we were able to come off the precautions. So I could finally touch my little girls without plastic gloves on. They could finally feel a little bit of comfort by the touch of skin. That was a VERY happy moment for me. I could finally relax a little.
The blood eventually came and they set that all up but my poor Abby just was so not happy. She just cried and cried. She would relax for a few minutes, but then she would start again. I had to sneak out at almost 7 because I wasn't going to leave if I kept hearing her cry.
Leaving your child when you know they've had a day like today is almost torturous. You want nothing more in the world than to be there for them, to give them a source of comfort and love. And to leave them is almost overwhelming sometimes. But I remind myself "heather you have to eat, you have to sleep, and you have to shower." I wish I didn't have to do those things so I could be there with them all night long, but I just can't and it breaks my heart.
The other thing that breaks my heart is having to call my husband and tell him these things are going on, and hearing in his voice how much he wishes he could be here. I know he wishes he could be the one who gets to comfort and console the girls. To be super daddy and be there in their every moment of need. And it kills me to hear it in his voice. But he knows that someone has to work otherwise we won't have a home to go back to. And as it is we are barley making ends meet. Being in two separate places not only puts a toll on your family, but also on your finances. And it is by no means easy to have that burden on top of everything else going on. And Riley does such a fantastic job helping bear that burden. I couldn't ask for anyone better to be going through this with. He really was meant for me.
Again we thank you all for your prayers and support. Without it we would not be where we are today. It's a hard road but we are doing our best to keep moving.
We are thinking about making T-shirts in support of the girls. If you might be interested either leave a comment here or on the Facebook post. Just so I can see what kind of interest there might be before I start trying to make them. We are hoping they may offset some of our costs so that Riley would be able to visit more than just once a month for a weekend. Thanks a bunch!!!
I can't tell you how many times I have started a blog entry, and not finished it in the past few weeks. Life is so different than it was just a few short weeks ago. Now that the girls are here I feel like my entire life has shifted, and it really has. It is insane how much your children can change you and the way you view the world. They have made me stronger and weaker at the exact same time. They make me want to be better and do better for them. They make me push harder, and fight stronger. But at the same time I hurt more, and worry more, and sometimes feel like my heart is going to come straight out of my chest.
Being a NICU parent is something I thought I could prepare for, but really nothing can prepare you for this journey. Conjoined fact aside, right now I am the mom of two preemies. Two preemies who have had most of the preemie issues. Yes they are doing fantastic, but that doesn't mean that the days are hard. They still are very immature since they still aren't even supposed to be here for another 6 weeks. They breathe like preemies, and are learning their sucking reflexes, their little bellies have a hard time handling feedings, their eyes have to be checked, their brains have to be checked, they have blood drawn quite often, and so many other little things that happen daily its hard to remember them all. And this isn't even related to their separation at all. This is just getting them to "term".
Watching your child grow seems fast apparently. So many times I hear parents say "enjoy them while they're little, they grow so fast", well in this case I feel like I am watching the grass grow. Yes, every day they get a little bigger, and a little stronger, but man, every day feels like an eternity! It is an eternity of sitting next to their bed while listening to other babies cry, families rejoice because they are taking their baby home, and other families cry because their baby isn't doing well. You walk past so many different emotions in the halls because everyone is in a different yet very scary place. No matter how "well" your child is doing it is so scary.
Honestly one of the hardest things for me personally in this whole experience is having to be there by myself. My husband is AMAZING! He is a wonderful daddy and he loves all his girls (all three of us) so much that you can just see it when he talks about us. But he has to be 519 miles away from us in NC working because if he wasn't we wouldn't have a home to go back to. It is hard enough trying to pay the bills on one salary, and harder now since he was out of work for over a month to be with me while we awaited the girls arrival. I can't imagine the struggles he faces daily being away from us. But I know the struggles I face daily being without him. It's very hard to be strong when the person you lean on most is so far away. I am the one who sits with the Drs and listens, who sits next to our babies day in and day out just wishing that he was here with us. Leaving at night is the worst. Not only do I have to leave my babies behind at the hospital, but I have to go back to a room by myself. I have to wake up several times during the night to pump and it is just such a quiet lonely time. 3am is not a fun time when your husband is away and your babies are in another part of the city being taken care of by other people than yourself. And right now we don't know when he is going to be able to come back and visit because we really just can't afford for him to miss any work, which is such a frustrating thing since he has already been back home for over 2 weeks. It's just hard, and being strong through it all is hard.
But I know that I can do this. I know that I have a strength in me that won't fail because it comes from the one who is strength itself. It is so true that God's strength is made perfect in our weakness, because right now I am weak. Everyone keeps telling me how strong I am, but what you are seeing isn't me, its Christ in me. He is the one who gets me through every day. He is the one who guides my husband in making the hard decisions for our family. He is the one who is making our girls fight and grow and be little miracles. It is all Him and none of ourselves. One day we will look back and say "wow look where God has brought us". I can't wait for that day to come. Being in the storm is so hard, but looking back and seeing what you have made it through is so rewarding, and I am just holding out for that day because I know it will come!!!
We so appreciate all the prayers. I know I have said this before but they really work and I whole heartedly believe that we would not be where we are today without all of your prayers. They move mountains and in this case very very tiny little people :) We are also so grateful for the gifts and cards that have been sent to us (I have tried to stay on top of thanking each one individually but if I haven't thanked you please don't take offense I meant to). Those cards and gifts have provided many bright spots and smiles. It brings joy and a bit of normalcy for having a new baby. Especially since we didn't have a baby shower. So thank you all so much. It means the world to us!!
And just a quick update on how the girls are. They are doing very well for their age. Yes they have some preemie issues (please pray they grow out of them quickly). But overall they seem to be growing and hitting the milestones they are supposed to be hitting. They have recently moved out of an isolet which is so much fun for me because I get to dress them now, and I can sit next to their crib and read to them and not feel like I am staring into a little box. I guess a crib and clothes just makes it all seem a little more "normal" for me. Erin is working on her sucking reflexes so that maybe someday soon we can try breast feeding. Thankfully the way that they are conjoined I would be able to breast feed (with a little bit of problem solving of course). So we are just praying that she gets it sooner rather than later so that we can have that special bond that I feel like I am missing out on. Abby on the other hand has a little ways to go before she gets to the point Erin is at. She is just a few steps behind and we are praying that she is able to catch up. I feel bad that she has more than one tube in her mouth. It just looks so uncomfortable. But overall they are doing very well :)
First off let me apologize for not posting sooner. My laptop charger died and so I am borrowing a computer at the Ronald McDonald House so that I can post an update. But it´s been a little crazy since the girls got here so I haven´t had a chance to sit down and collect my thoughts yet as well.
So lets see where to begin...
Bed rest was quite and experience, one the I was definitely not expecting. Even though I wasn´t expecting it, and it was not the easiest, but the hospital and staff were amazing. We made friends with almost all of our nurses to the point where they would hang out with us when they weren´t caring for their other patients. One nurse folded our towels into animals, another nurse taught Riley how to play the ukulele and brought me flowers, and other would just hang out and swap stories and make us laugh. We really were blessed to have so many fantastic nurses. There wasn´t one who I would say I didn´t like. Between that and then all the different opportunities they provided for us (Music therapy, pet therapy, art therapy, etc) we had things to do and people to talk to all the time.
Those are the good point but bed rest was no easy by any means. Yes we had things to help pass time, and people had sent us wonderful care packages (THANK YOU). But being stuck in a little room with a window that faced a brick building for weeks was not fun, but completely worth it at the same time.
One evening (July 23rd) Riley and our one wonderful nurses were playing ukulele in our room just hanging out when I decided to get up and use the bathroom. When I went to the bathroom I realized (sorry if it is TMI) that my pants were a little damp, which had never happened before. So unfortunately I had to stop the party and figure out what was going on. So the OB came in and checked me and realized that I was between 1-2 centimeters dilated and about 70% effaced. That came as a complete surprise to me as I had not had one cramp or one contraction. I was just feeling pressure which was nothing new since the girls had situated their heads in my pelvis quite a few weeks earlier. So they decided to monitor the babies and then check me again in an hour. But before that hour was up they had also decided to get me another round of steroids and set me up on the magnesium drip again.....UGH. I was not thrilled about that one, but anything for my girls. So thankfully they got a new IV in me and started all those fun medications. They came back and checked me an hour later to find that not much had changed. I was still the same amount dilated but was closer to 80% effaced. Since things didn´t seem to be moving very quickly they decided they would let me sleep through the night and then check me around 6am unless something changed. (This was around 12 midnight.)
So of course Riley and I call our families just to let them know what was going on. And while I was on the phone with my mom my water decided to break. And let me tell you when my water broke, it really really broke. We had found out two days earlier that my fluid had gone up a little bit, not so much that they were worried, but they made it a point to mention it. So I felt like I lost half my body weight in fluid. They were doing everything they could to help soak it up (since I was in bed and hooked to IVs there was no where I could go). They were using towels and blankets and ugh, it just felt like I was gushing (which I´m sure some other mamas out there can relate to, to some extent). So as soon as we called the nurse things started moving very very quick. At the time baby Bs heart rate kept dropping and all I kept hearing what them saying baby Bs heart rate is dropping again we need to get her to the OR. I was amazed an how quickly they unhooked me and had me wheeling down the hall into the OR.
When I got into the OR it was almost like time slowed down for me. I saw people running, and heard people talking, and things were happening to me, but I just breathed and prayed. I kept hearing about baby Bs heart rate dropping, and about the Dr that was supposed to deliver me being on her way. I had one nurse who stayed by my head the entire time and explained everything that was happening. At one point I realized that I still had not gotten my spinal that we had originally talked about. And when I mentioned it I learned that I was going to be put under anesthesia because everything was happening too quick and baby b was in distress. So again I took another breath and prayed and took the news in. Then I felt medications stinging as they were being pumped into my IV, a catheter being put in (not fun), I felt cold liquid covering my stomach. I saw sheets being put up and lights shining bright. Then the anesthesiologist told the nurse to tilt my head back as far as it would go since they were going to intubate me immediately after I went under. So as I felt my head tilt back and far as it would go I took a deep breath, said one more little prayer for my babies who were about to be born, and went to sleep.
All of this happened between 12:45 and 1:20 when my beautiful perfect conjoined baby girls were born. They were each about 2lbs and 1oz a piece and are as pretty as ever. They were born at 30 weeks and 4 days and had no problems with their breathing at all. The Drs told us that they came out screaming. I was woken up once I was sewn up and all done, and wheeled back into my room to find Riley gushing about our baby girls. (one of our nurses took pictures with my cell phone for us so that´s all that he had seen when I was finally brought back in.) Once I started to come to I realized that there was a crib being wheeled into my room to meet my two precious little miracles. Honestly I don´t fully remember that moment too well as I was really fuzzy but just knowing that my girls were here and doing well was all I needed.
(I will post another update with what has been going on since then very soon)
Thank so you much for all the prayers. I know that even though ya´ll didn´t know what was happening at the time, God did and He knows your prayers. I know He was there with me as I was wheeled into the OR. I know He was waiting with Riley while the girls were being born. I know He was with my babies as they took their first breaths and had all sorts of Drs and nurses handling them and checking them. I know He has been with all four of us in these past two weeks more than I could have ever imagined, and please know that your prayers and well wishes have been strongly felt as well.
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!