Monday, June 28, 2010

Good Days, Hard Moments

I remember almost 4 weeks ago I couldn't imagine ever being happy again. I remember not knowing how happiness could ever shine through the pain that I was feeling. Or how I would ever be able to not cry when seeing a baby or babies. How I would ever be able to see a pregnant mommy and not lose my mind. How I would never be able to think about anything but my lost twins.

I remember Willy and I used to talk about how great things were really going for us. We used to agree that good things happen to good people. How blessed we were to have two beautiful boys with two more on the way. How he had a good job and we were able to have family time in the evenings and on weekends. We might not have the biggest house or the best car(s), or much money in savings, but we had what really mattered to us.

A week after losing Caleb and Lucas I remembered how we used to talk about how great things were and how it just wasn't that way anymore. I just cried and cried that day. I wanted to go back and feel that way again. I wanted to feel grateful for my life and not hurt anymore. I knew I needed to truly appreciate having Colton and Ethan, but when feeling that intense emotional pain, it is so hard to feel grateful for anything. I would tell myself over and over again I needed to enjoy Colton and Ethan and not take them for granted.

Two days ago, the four of us were in the van on the way to a birthday party. We were sitting at Sonic talking about how hard it must be for a friend whose husband is working tons of overtime right now. And the thought just popped into my head, "We are so blessed." And then I started to cry. What a bittersweet thought. I was happy to be able to feel that way, but I almost felt like I had "forgotten" what we had just been through.

It seemed too soon to be feeling that way. I felt like maybe I wasn't giving Caleb and Lucas the attention I should be. They cross my mind several times an hour, but they are no longer all I think about. And then it hit me, it's already almost been a month since they were born. What happened???

When I came home that evening I was reading an article on the Glow in the Woods site and it mentioned how we as babyloss parents eventually "integrate" our lost children and the horrible experience into our lives. We never forget them or move on, we just find ways to have them with us without having to always think about them. I think maybe this is where I am heading. Once again, it's bittersweet.

I have had almost a week of what I consider good days. These good days have hard moments when the tears come, my shoulders shake, and I hate it all. But when those moments pass, I am able to see what wonderful family and friends I have all around me. But I know as each good day passes, that I have a hard day coming up. A day full of tears. A day when the tears fall freely. And as they fall I remember all we have lost and how it all really sucks a lot. And what helps to get me through these days is knowing that tomorrow is another day, and there's a good chance it'll be an easier one.

Today is a hard day. At almost 11:00am I have cried more tears than I had all weekend. Many of those tears are just the ones falling, others are angry tears, and some are the sad tears. And it's the intense sadness that is talked about. The sadness you really can't explain. It's one of those days when I'll have to hold Lucas and Caleb's monkeys and cry myself to sleep during Colton and Ethan's naptime. One of those days when one random thought leads me down a very hard road for awhile. One of those days when I would really like to go back in time even though I know it wouldn't change anything or bring Caleb and Lucas back to me. It's one of those days.

So here's to respecting the hard days for what they are...a reminder to really appreciate the good days. And here's to the good days for coming more and more often.

Friday, June 25, 2010


Over the past couple of weeks I have been battling with the phrase, "This happened for a reason." and all the variations of it. I understand that most people don't know what to say, but this phrase has bothered me quite a bit. Don't they understand I am already searching for a reason? I don't need to be reminded to keep searching. I am grateful for the good intentions of these friends and family, but I don't feel better or more at peace after hearing such phrase.

I have been doing some soul searching, some blog reading, and some independent study. I have come to the conclusion that I didn't lose my babies due to some divine reason. I understand that I am not supposed to ask why. And it's not because God is cruel and wants me to wander. I believe He isn't the reason why I lost my babies. There was a medical problem with their placenta. Twin to Twin just happens. It sucks and it happens. We were one of the unlucky 20% who were affected. My babies were in the 70% who lose their lives because of it. And I don't blame God.

I know I prayed every night from the day I found out they shared a placenta at 10 weeks for them to be healthy babies. Sometimes I prayed several times a day. I knew that there were risks and I prayed that my babies would not be part of the statistics. When I was in the hospital, I prayed harder than I have ever prayed before. I prayed with all my heart, and I know so many others joined me in prayer. But it happened, I lost my babies. But I don't blame God

I have asked WHY so many times. I have screamed and cried WHY. I have looked back and wondered what I, as a person, have done wrong to deserve this. What had I done to lose my babies? And then I realize bad things really do happen to good people. God doesn't plan for bad things to happen. God didn't make it to where my two babies would share the same placenta and be connected "X" amount of times where TTTS would result. I honestly believe He's not like that. I don't blame God.

I honestly believe He knew this was going to happen to me, my family, and my babies. I believe He presented me with opportunities so that I would have the support and strength to survive this nightmare. I honestly believe that losing Caleb and Lucas was due to medical reasons. I also believe that I would not be pushing through this if He hadn't given me the strength and put the right people in my life. I believe He did what He could to make this "easier" on me. I trust God

I am not going to lie. My faith has been rocked, tested, and crumbled through the loss of Caleb and Lucas. I have wondered to myself at times that one big question. But He continues to show me every day that He is there and loves me, whether I see it or not. He cares for me and is patiently waiting for me to see how amazing He is. Today I finally was able to see it again. I am sure there will still be times when I go backwards a bit, but I know He's always there. He hurts with me and for me. And He is there to help me when I just don't feel I have the strength to face one more look or question. I trust God.

So for those moms and dads who have unfortunately become members of the Dead Baby's Club, I am ever so sorry. I hope my thoughts help some. For those who know someone who has lost a child, please don't try and console them with, "This happened for a reason." or "It's all part of God's plan." I believe those phrases to be wrong, and it honestly does not help a grieving mother or father. I tell you from experience, it kind of makes us more sad and angry. I believe the "reason" my babies died is purely medical. And I trust God.

Tuesday, June 22, 2010

Telling Colton and Ethan

Many friends and family ask how Colton and Ethan are doing. And they wonder how we told them our sad news and how they handled it. So I thought I would share on here.

We didn't want to tell the boys about Caleb and Lucas at the hospital. We wanted to be home as a family where they would feel the most comfortable. Dru brought the boys home on Friday. I was sitting on the couch with my pillow over my belly (protecting the c-section incision) and a blanket. Ethan ran in the house, told me hi, and then ran off to play with trains.

Colton ran up to me and immediately asked where the babies were. He knew mommy was supposed to be in the hospital until babies were born. We sat down with him on the couch and the following is what I told him.

"Colton, we have something sad to tell you. Remember how we talked about how the babies had to grow so much to be born? Well, mommy had Caleb and Lucas and they were really small. They were too small and we tried really hard, but they died. They are in Heaven now with Jesus. We want you to know that it is okay to be sad and cry. And we love them so much and will miss them. And it is okay to talk about Lucas and Caleb anytime you want."

Colton had this pained look on his face. A look no 4-year old should ever have. He wanted to cry, but looked as though he wanted to stay strong for his mommy. It was incredibly hard to watch him process. He sat with me for a few minutes while Willy looked up something on google maps. He then went in to see what Willy was doing, pointed at the map and said, "Daddy, is that Heaven?"

Willy grinned, told him no, but that we would see if we could find some pictures of what people think Heaven may look like. So we googled Heaven, clicked on images, and showed him some different pictures. One was of Jesus with rows of angels behind him. Colton asked if the angels were playing with the babies. We told him yes and he seemed pretty happy about it.

About 10 minutes later he came over to me on the couch and repeated what we had told him about the babies. He then asked when we were going to bring them home. I tried to explain that since they are in Heaven, we won't be able to bring them home. He had that look again and just hugged me. Colton and I still talk about the babies at least once a day. I am so happy that he has handled this so well, and that he wants to talk about them.

As for Ethan, a week after losing Lucas, my cremation locket came in. Ethan saw it hanging around my neck and asked what it was. I explained to him it was how mommy kept the babies close to her heart. I told him it was the babies' necklace. He looked at my belly, then gave the locket a kiss and said, "Love you babies." For being almost 3, he has done so well. He kisses the locket every night and once in awhile during the day.

Colton and Ethan are doing very well through all of this. Colton is very sensitive to my moods, which helps me keep it together sometimes. They play with the twins' monkeys often. I am so proud of how well they have handled all this. It's a tough thing to understand, even for adults. We've tried to keep it simple, knowing we can expand as they get older and ask more questions. I look forward to sharing with them as they get older. I want them to know that Lucas and Caleb will always be a part of our family.

Sunday, June 20, 2010

To Daddy on Father's Day

I came across this this morning and felt I needed to share it:

To Daddy on Father's Day

Don't cry for me Daddy
We are right here
Although you can't see us
We see your tears

We visit you often
Go to work with you each day
And when it's time to close your eyes
On your pillow where we lay

We hold your hand and stroke your hair
And whisper in your ear
If you're sad today Daddy
Remember we are here

We are Daddy's little angel's
We will never be apart
For every time you think of us
Please know we're in your heart.

We love you Daddy!

Your baby angels

(author unknown)

Tuesday, June 15, 2010

Some pictures of our twin angels

Lucas and Caleb's TTTS story Part 3

Again I sent Willy hone 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 find that there was more fluid around Caleb.

At around 1:30am, my nurse came in to check on Caleb. His heart rate seemed to be dropping 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 meant he was being shrink wrapped by his own sac. They decided it was time for an emergency c-section as my mom and sister were walking in the door. I couldn't get a hold of Willy. He needed to be there. I was having surgery now and I was terrified. I started crying hysterically as my mom removed my jewelry, they cut off my VS bra, 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 risk' if I had a choice at this point. We were losing Caleb.

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 and 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 didn't get to tell him I loved him. 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 when 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 the neonatologist would talk to me later and Willy would be able to see him in a few hours.

On Tuesday, June 1st, Lucas was born at 1:54am, stillborn. He was 11.5 inches and 1lb 14oz. Caleb was born at 1:55am. He 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 dozed some with my angel in my arms. I cried so many tears for my lost son and worried about Caleb. Lucas was perfect. He was such a tiny baby. And I still 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 stared to die some. Also, his kidneys were not working. By 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 I 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 to 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 sever 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 nodded. 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 asked 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 placed 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 2:36am 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 time with boy my babies 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 every day. We chose to have the boys cremated so they could be at home with us. I wear a heartshaped cremation locket with two sets of footprints around my neck with some of their ashes in it.

This is Caleb and Lucas' story. We miss them so much. Every day is painful, though a few have been easier. We feel robbed and cheated. Sometimes it's like a nightmare that I will wake up from and still be pregnant with my little angels. I also feel angry. I know it will never be easy and the hurt will never go away. I just pray for days when it's not so hard. I feel so 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.

Lucas and Caleb's TTTS story Part 2

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 154. The boys were doing great, I felt like I was leaking less fluid. At 5:00ish, I told Willy things were looking good and that he could take the boys home for the night. I had plenty of friends who had offered to stay wit me and we thought it would be good for the boys and Willy to have a night at home.

At 7:30pm, I started feeling some pressure that was coinciding with the monitored contractions. I called for my nurse as instructed. She decided to check the boys' 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 easy enough. They brought in an ultrasound to find Lucas since he seemed to be giving them a hard time. Jill, one of my MOPS mentors, was there with me. We were looking at the screen and 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 cord prolapse. The ultrasound techs arrived.

At around 8:30pm, May 31st, I learned that we had lost Lucas. The movement we had seen just an hour earlier was my pulse running through his cord. Once again I completely lost it. I just lost one of my babies and I never had a chance to hold and smell 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 came in to figure out our new plan and what had happened. She looked at the boys on 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 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 withing hours there should be more fluid for Caleb as his kidneys began to produce again. 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 going 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.

Lucas and Caleb's TTTS story Part 1

Our TTTS (Twin-To-Twin Transfusion Syndrome) Story

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 very badly. 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. 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 had excess fluid. I quickly had gone home and knew 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 admitted on bed rest until I delivered. I was 24 weeks and was hoping to make it until 36 weeks. I was going to be on hospital bedrest 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 7 oz. 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 doctor came in a 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 and then 2.5lbs and 26 weeks. I was in this for the long haul and ready to do it. 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 and really didn't like it. Even after I was informed it would be two weeks before they would allow me up to use a bed side commode, I held my spirits up. 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 Caleb and Lucas. 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. I asked all the right questions and it seemed there were no signs of TTTS. I didn't ask specifically about TTTS but I felt from her report and my research confident. The plan was to keep on our path and maybe Caleb's bag would reseal itself.
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