For many of our friends and family, you don't know the story of our nightmare. You know we lost Caleb and Lucas and that we are hurting so bad. We thought we would share our story to hopefully answer any questions. I am totally up for talking about the experience and our beautiful twin boys as it helps me heal some every time.
When we found out we were having identical twins who shared a placenta, I quickly did loads of research. I came across TTTS in many sites and learned the early signs and such. I knew it was a possibility for our twins, but prayed daily that it wouldn't happen to us.
On Saturday, May 29th, Willy and I arrived at the hospital due to me thinking I was leaking fluid. We knew from a previous ultrasound that both sacs has excess fluid. I quickly had gone home and knew that as long as they had close amounts of fluid and they were the same size, TTTS was not to blame. On the way to the hospital we talked about what might happen if I was leaking fluid and just hoped and prayed it wasn't the case.
We were at the hospital for an hour and a half when the test came back saying that I was indeed leaking fluid. I cried so hard and I was so scared. Willy sat there, strong, holding my hand. I asked what happened next. The nurse said they would do an ultrasound, a visual exam, and then I would be in the hospital on bed rest until I delivered. I was 24 weeks and wanted to keep my babies in until 36 weeks. I was going to be on hospital bed rest for 12 weeks and I was ready for it. Anything to keep my boys in me as long as possible. She told me that they have had moms in there for several weeks, so I kept this as my positive thought.
The ultrasound tech then came in to get measurements. He measured Lucas at 1lb 4oz and Caleb at 1lb 7oz. He couldn't measure the fluid because he was having a hard time locating the sac line between them. But he did claim that there seemed to be quite a bit of fluid around both babies. Their heart rates were great and they were moving around.
The on call dr came in and confirmed that I was not dilating. She said they would admit me to labor and delivery. I would be given IV fluids, antibiotics, and steroid shots. The steroids were to mature their lungs and brains for in case we had to deliver early. She said the first 48 hours were the most crucial and I put that down as a milestone. She then said we needed to get them to 2lbs and 25 weeks. Then 2.5lbs and 26 weeks. I was in this for the long haul and ready to do it. And I was terrified! My babies lives were at stake. But I knew I was in the right place and we were being monitored.
That night was a rough one. I had to use a bedpan for the first time. Although I really didn't like it, I was willing to do it. Even after I was informed it would be two weeks before they would allow me up to use a bed side commode. They came in to monitor the boys and me every couple of hours. The steroid shot burned as they shot me in the rear. I was uncomfortable and scared. But I was going to do this, with minimal complaints. They were my babies and I had to fight for them. They also could not put me on regular monitors for the boys since they were so small, and moved so much. But they did monitor my Braxton Hicks contractions to make sure they did not change into real contractions.
Sunday afternoon, more ultrasound techs came down with some high-end equipment to get a better look at Lucas and Caleb. They were quiet the whole time, looking hard at things I couldn't see. Willy was eating lunch and I was panicking a little. I wanted to know what they were looking at, what they found, and if our plan of action was changing.
My new on call doctor came down 15 minutes later to give me the results. It looked as though Caleb's sac had ruptured as he had less fluid than Lucas. This was rare because he was the top twin and usually it was the bottom twin whose bag would rupture first. She said they looked closely at the placenta and cords. And everything looked good. They couldn't find anything that would show signs of TTTS. I didn't ask specifically, but from her report and my research, I felt confident. The plan was to keep on our path and maybe Caleb's bag would reseal itself.
On Monday, the 31st things started the same. More using the bedpan, another nurse, and more IV's. At 2:30pm we reached the critical 48 hour mark and knew that we were a little safer. Now to just get to 10:00pm, which was the 48 hour mark for the steroids. We were doing it, we were making it, hour by hour. At 2:45pm, Lucas' heart rate was 144 and Caleb's at 154. The boys were doing great, I felt like I was leaking less. At 5:00ish, I told Willy things were looking good and to take the boys home for the night. I had plenty of friends who had offered to stay with me. I thought it would be good for the boys and Willy to have a night at home.
At 7:30, I started feeling some pressure that was coinciding with the monitored contractions. I called my nurse in as instructed. She decided to check the boy's heart rates and try to put them on the monitors. She began to give me meds to stop contractions in case I was beginning to go into labor. She found Caleb easily enough. They brought in an ultrasound to find Lucas since he seemed to be giving them a hard time. Jill, one of my MOPS mentor moms, was there with me. We were looking at the screen seeing what looked like Lucas sucking on his thumb. But in the position he was in, they couldn't get a good look at his heart. They really needed to see it, because it seemed my heart rate was interfering with his. They were reading in the 120's.
The doctor came in to look and was also having troubles. She called for the high-tech ultrasound again. She kept reassuring me that Lucas wasn't the one we were concerned about and to not panic. She did a visual exam and I was still closed and there was no sign of his cord being clamped. The high tech ultrasound people arrived.
At around 8:30pm on May 31st, I learned that we had lost Lucas. The movement we had seen an hour earlier was my pulse running though his cord. Once again I completely lost it. I just lost one of my babies and I never had a chance to hold him and love him. He was gone so quickly. Everything was great just a few hours ago. How could this happen? And to us? And what about Caleb? And I have to call Willy, get him back to the hospital. And make arrangements for Colton and Ethan.
Right after Willy arrived, the perinatologist arrived to figure out our plan of action and what had happened. She looked at the boys on the ultrasound and confirmed my worst fear. We had lost Lucas to TTTS. He was the recipient twin and passed due to congenital heart failure. His tiny heart had worked too hard to pump the extra blood through his body. Within 24 hours we went from everything looks good to we've lost one of our sons and the other one is in jeopardy.
The perinatologist said that it looked as though Caleb still had fluid around him. She said in "most" cases the donation of blood stops and within hours there should be more fluid for Caleb. The hope was to keep him monitored and carry both twins as long as I could to give Caleb the best chance. And you know, I was willing to do it. I took slow, deep breaths, and was determined to see this through. I mourned the loss of Lucas, but knew that we still had Caleb and we were going to fight for him.
Again, I sent Willy home to get some sleep. I had an amazing friend, Kristan, with me for the night and we would all attempt at some sleep. And my mom would be there around 1:30am or so. We just had to get to the morning for another ultrasound and hopefully see that there was more fluid around Caleb.
At around 1:30am, my nurse came in to check on Caleb. His heart rate seemed to have dropped to the 120's and they were concerned. Oh no! Another nightmare!! I laid there while they did the ultrasound and found that he was "stuck" This term means that he was being shrink wrapped by his own sac. They decided it was time for an emergency c-section. As they were deciding this, my mom and sister walked through the door. I couldn't get a hold of Willy. He needed to be there. I was having surgery like now and I was terrified. I started crying hysterically as my mom removed my jewelry, they cut my VS bra off, and prepped me for surgery. And the only question I could come up with was if they were going to put me out for this. I knew what was happening, and they were letting me know the risks....as if I had a choice at this point.
It was just like what you see in the movies. Ceiling lights and tiles flashing by, doors swinging open, a room full of people in blue, and tons of metal and lights. People introduced themselves to me and told me their jobs. My nurse was on one side, the anesthesiologist on the other. I felt them prepping me some more and I worried about whether or not Willy was going to be at the hospital soon. I signed a paper that said, "Risk of death", said a quick prayer, counted to four and woke up in recovery.
Willy made it to the hospital while I was in surgery. Even if he had been there earlier, he would not have been able to be with me since they put me out. They seemed to be confused on where to send him, but he was in recovery as I woke up.
I remember waking up in crazy pain and asking about Caleb. All they would tell me is that he was in critical condition and in the NICU. No details, but that Willy would be able to see him in a little while.
On Tuesday, June 1st, Lucas was born at 1:54am, stillborn. He was 11.5 inches and 1lb 14oz. Caleb was also born at 1:54am. Caleb was 12 inches and 1lb 1oz. What an incredible change within a little over 48 hours. He had been "stuck" as previously seen. His left leg had been without blood flow for a couple of hours and his kidneys had not been working due to the TTTS.
They asked me if I wanted Lucas in my room. I said yes without even thinking about it. I got to hold him and even slept with him some. I cried so many tears for my lost son and worried about Caleb. Lucas was perfect. He was such a tiny baby. And I couldn't believe we had lost him.
Willy was able to see Caleb later Tuesday morning. He told me how things looked rough. His blood pressure was very low and he was extremely anemic. His left leg didn't look good at all. The skin had started to die some. Also, his kidneys were not working at all. By the afternoon, I was able to sit in a wheelchair and see him myself. But I couldn't touch him. He was so perfect and precious and I just talked to him. I told him how much I loved him and that we were all pulling for him. I knew he was strong and that it would be a fight.
At around 10:00pm that evening, the neonatologist came in to speak with us. I knew when I saw him what he was going to say. Caleb was losing his fight. There had been a brain bleed, his liver had also shut down, and he wasn't moving when even preemies move around. They also said that even if he miraculously pulled through this, there would be severe handicaps and he would lose his entire left leg. He said there really was no hope left and that it was time to make a decision. I looked at Willy, he shook his head. And then we made the hardest decision a parent ever has to make.
We called his mom and our pastor to join us. My parents and sister were already there. We wanted to be together as a family through this. We opted to have them bring Caleb to my room so that I could hold him after they removed the ventilator. I wanted him at peace in my arms.
At 12:30am on June 2nd, they brought Caleb in to us and removed his ventilator. They place him in my arms. I kissed him, told him I loved him, and just held him. Every 15 minutes they checked his heart rate. They would quietly look at me and whisper that it was in the 40's. At one point, I asked Willy to bring Lucas to me so I could hold them both. I had dreamed so many times of holding my twin boys together. Only not in this way.
At 2:36 am Caleb's heart quit beating. He fought for 2 long hours. He was such a strong little boy and I feel so blessed to have had him for 25 hours. And to have had those 2 hours to hold him and talk to him. I remember dozing off a couple of times with both my boys in my arms.
The nurses took pictures of both my boys. They made a memory box with their blankets, hats, and plaster footprints. They printed off some of the pictures and gave us a cd. I look through their boxes and at their pictures every day. We chose to have the boys cremated so they could be at home with us. Dru bought me a piece of cremation jewelry so I can carry a piece of them with me all the time. It is a heart shaped piece with 2 sets of footprints on it.
This is Caleb and Lucas' story. We miss them so much. Every day is so painful, though a few have been easier than others. We feel robbed and cheated. Sometimes I feel like it's a nightmare that I will wake up from, and still be pregnant with my little angels. I also feel angry. I can't directly place this anger, but it's there. I know that it will never be easy and the hurt will never go away. I just pray for days when it isn't as hard. I feel blessed to have Colton and Ethan. They keep me busy and warm my heart. They are also handling this so well. What strong boys I have been blessed with.
