May

 

 

The number of months since Lucas and Caleb were born.  1 month shy of 3 years.  And this number seems incredibly HUGE right now. It has been 35 months since I held them in my arms. 

 

I had a really hard day yesterday.  Willy and I have decided to donate their snap n go stroller and infant seats with bases to one of the fostering agencies here in Springfield.  It feels right, it really does.  I called yesterday morning to find out the details for dropping them off and made it through the call fine.  But when I hung up, the tears stormed down my face.  My heart felt like it ripped open again and that I was losing those baby boys all over again.  And the tears fell throughout the day. Anytime I thought about Lucas and Caleb, the tears took over.  It was different this time, though.  I felt great in between those moments.  I didn't have this dark cloud constantly hanging over me, it just appeared for a time then left, as did the intense pain. 

 

Willy has said that he'll drop them off.  I know there is no way I will be able to.  I  try to picture myself being there and the image isn't pretty. More like me having a steel grip on the handle of the stroller while crying out, them trying to understand what is wrong with me.  Yeah, not such a great idea.  And I pretty sure, that is how it would happen.  Think I'll just stay home for that one.  And if Willy doesn't want to do it, I know there are many friends who will make the drop for us. 

 

We don't want to wait any longer to do this.  I think time has done what it can in this area.  And it would be pointless if the car seats expire.  I hope that these emotions tied to these items are so weighted due to the emotionally charged season. 

 

Today is a rough one also.  It has been months, maybe over a year, since I have had a group of rough days.  I woke up this morning and knew I was in for a ride today.  I really hoped last night that today would be great, and knew that with the rainy weather coming in, that I needed a good day to buffer the rest of the week. 

 

But I miss them.  I hurt so much for them right now.  And I'm missing them for Simon all of a sudden.  Simon LOVES Colton and Ethan so much.  His face lights up when they are in the room.  And they get laughs out of him that are only for them.  He holds my locket often.  Up until now it has made my heart swell with love, but recently it brings a little bit of pain. 

 

I know this is another season I have to walk through.  It is incredible how one can be busy and almost forget the degree of the pain that comes with losing a child.  I am still learning how to grieve for them.  Each year, each birthday is different.  And I can honestly say this year is a whole lot tougher than last.

 

35 months have passed.  I miss you baby boys.

14 weeks (and a day)

Baby Size: 3.5 inches (lemon, yum!)

Weight Gain: 4.5 lbs

How I feel:  Great as long as the sun continues to shine!!!

Symptoms:  My breasts are still crazy sore.  And everything else, minus the nausea, is still going on. 

Favorite Food: Rice Krispie treats and Bush's Grillin' Beans.  The Texas Ranchero ones. 

Best Part of Last Week:  Feeling baby flutters on a daily basis.  Whoo hoo!  Makes me giggle everytime.  Felt the first really noticeable ones on 03/31. 

Looking forward to: Easter this week.  Going to make Cinco a little basket.


I am so very excited to be at 14 weeks.  Every week is just so amazing to me.  The weather has been crazy warm here, so we set the pool up last night.  It's going to be so great to have one in the backyard the boys and I can enjoy all summer.

I am having alot of flashbacks right now.  With Easter and Colton's birthday right around the corner, thre are some definite days that I remember with my pregnancy with Lucas and Caleb.  These are tough.  There are middle of the night moments when I am still trying to rearrange events in my mind to make the outcome different.  It's all mind games.  I find them frustrating, yet I know it's all part of their journey and Cinco's.  I am also making conscious efforts to not wear the same outfit on the same days such as Easter and Colton's birthday party.  Sounds crazy to some, but I know my babyloss mommas completely understand.

This past week I learned of a mom who found out she was pregnant with identical twin boys at 18 weeks. Two days later she was diagnosed with stage 4 TTTS.  I don't know many details right now, but please keep her in your prayers.  It is so hard to learn that another family is falling victim to TTTS, and it really breaks my heart. 

I will end with a 14 week belly shot!

Worth the Wait

"A true friend is someone who thinks that you are a good egg even though (s)he thinks you are slightly cracked." Bernard Meltzer

How true, how true.

Back in June, after Lucas and Caleb were born, I found the TTTS Foundation facebook page and scrolled down for what seemed like forever for someone who had also recently lost their twins. I found Rhonda! I sent her a message, reaching out for support. Three days later, she sent me so much love and support, I just knew she would be the one to help pull me through this. Rhonda lost her girls, Zoe and Anna on March 29th. She is only two months ahead of me on this journey and she's been where I am, and is where I am going.

We talked about a week later on the phone for over 2 hours. Those first conversations were 90% about our lost babies. We would just cry together on the phone. Then our conversations were more about our surviving children, our husbands, and everyday stuff. Now we have many phone conversations where we don't even mention our babies. And that is good.

Rhonda lives in CO, 14 hours from Springfield. She has family in KS and we have discussed meeting each other one day when she comes to visit. Kansas City is only 3 hours from here. Well, her September trip fell through, but she planned one for January. I cleared my calendar for this past weekend and planned to go up and meet her.

And it was AMAZING! I felt like I was in college again, hanging out with a long lost sister. There really aren't enough words to describe the time I had up there.

We shopped all day. We would try on shirts, put most back, pick out more, then buy some here and there. We hit up some fabulous boutiques in Overland Park. She brought out a fun side of me that has been hiding for some time. I felt carefree and really happy. Let's not forget these fantabulous cupcakes full of chocolaty goodness! And we ate at this superb topas restaurant....at 9:30! It was just great. Although I still feel bad for pooping out after dinner and deciding it was best if we went back to the apartment instead of going dancing. But check out this outfit...
We looked crazy HOT!

Even though I hate that we both lost our precious twins, I am ever so grateful to have this wonderful woman in my life. She is one who truly knows how I feel and offers great advice in the many different and difficult decisions I have to make on this journey. When I found her, I wanted to find someone who, even though missed her babies dearly, still concentrated on the awesome family she still had and was able to embrace it all. She is truly beautiful inside and out.

And this trip was worth waiting 7 months for. I can't wait to see her again and to get our kiddos together next time.

TTTS Awareness Day 2010

Today is TTTS Awareness Day. My Lucas and Caleb were lost very quickly to Twin to Twin Transfusion Syndrome. Awareness and Education about TTTS is very important in diagnosing and fighting this disease of the placenta and saving the lives of identical twin babies. Doctors and mommies alike should be aware of this disease, the symptoms, and the different treatments AS SOON AS an identical twin pregnancy with the twins sharing a placenta is found. I will be lighting a candle for Lucas at 5:10pm and one for Caleb at 5:15pm tonight.

I knew about TTTS from February 18, 2010. The day I found out we were having Lucas and Caleb. I came across it in my crazy search about twins. I came across the TTTS site and scanned the information. I saw that a difference in weights and/or amniotic fluid was a symptom to really watch for. I put this in the back of my mind, trusting that my doctor was also watching for this from the beginning.

At each appt, the boys weighed very nearly the same, and the amount of fluid was similar. At my 22 week appt, we learned that BOTH sacs had excess fluid. I searched everywhere and I couldn't find a correlation between both sacs having excess fluid and TTTS. I went to the hospital on May 24th due to Braxton Hicks contractions that had become pretty consistent and were coming every 3-4 minutes. They kept me overnight, and released me the next morning. I had gained some weight pretty fast, but both Lucas and Caleb looked great and there was visually no signs of TTTS.

On Saturday, July 28th, I was taking a nap, rolled over and felt a gush of water. Not like gallons, but more like I may have wet myself. After a few hours, and seeing a little pink, we decided to head to Labor and Delivery to be checked. I will NEVER forget being told that one of my bags had ruptured. But, the babies weighed within 3oz of each other, and there seemed to be plenty of fluid in both sacs. Bedrest for the remainder of my pregnancy was on order. And no mention of TTTS.

On Monday, May 31st, at 7:30 or so, I started having real contractions. They came in to check Lucas and Caleb. They brought in an ultrasound machine to find them. We saw them both, moving, or so we thought. At around 8:30pm, we learned Lucas had gone to Heaven. I was diagnosed with early acute TTTS. The perinatologist said she had NEVER seen TTTS hit so quickly this early in a twin pregnancy. My OB said the same thing over and over again to me throughout the following weeks.

Both babies were born 4 hours later by emergency c-section. Caleb was already "stuck", or shrink wrapped, by his amniotic sac. When he was born, his left leg had been without circulation for some time and his kidneys had already shut down. He also suffered a severe brain bleed. 25 hours after entering this world, he grew his wings and left, taken by TTTS also.

I know I was where I needed to be, Lucas and Caleb were carefully watched, and TTTS still took them. I have had TONS of guilt off and on throughout all this. I often wish I had taken the 15 questions off the TTTS website and asked the Ultrasound techs those questions at every appt, if that would have saved my babies. I know this was out of my hands, but the mommy part of me feels I'm to blame at times. (Not near as often as it used to be) But what keeps me sane is knowing that I was in the right place, being monitored, and there is nothing else I could have done for my sweet Lucas and Caleb.

I have made some really amazing friends through this TTTS journey and the one thing that really sticks out is Awareness and Education. And I know that when I hear of a mommy carrying identical twins with a shared placenta, I will congratulate her, then ask her to check out the TTTS Foundations website. And I will ask her to please take it seriously. I don't want to be Doom and Gloom, I just want her to know how REAL this really is, and how when you beat the 0.4% of conceiving identical twins, the 20% chance of TTTS isn't so large.

A bit more please...

So I know this is my picture of the day also. As I started describing it, I realized there is so much more that I want to write about it. It brings out a flood of different emotions every time I see it. It wasn't until this past Monday that I was actually able to bring myself to take it off my camera and look at it for the first time. I knew it was there the whole time, I just couldn't bring myself to look at it. And I still hadn't realized the emotions it would bring other than the sadness.

I had asked Willy to pick up some peanut M&M's on his back to the hospital. My dad had made it down and sat with me so Willy could take a shower and pick up some things from home. You see, this was taken on Sunday. I had been in the hospital for 24 hours and had 11 weeks and 5 days to go. He took a couple of hours and I was beginning to wonder where he had gone. When he showed up, I begged him for my M&M's. I was having a serious craving and needed them bad!

He pulled out all three containers, each containing a different type. He knew how my cravings changed like the weather in Missouri . And he knew it was going to be a long stay. And he knew it would make me laugh and smile every time I looked at all three containers filled with M&M's. He's an amazing man.

I also look at the other side of this photograph. I am smiling and laughing. I knew I was going to be in this bed for almost 12 more weeks. And I was at peace with it. I was in pain and worried, but we had made it past 24 hours and things were looking good.

This all comes rushing back to me and I think how it all disappeared so quickly. I think about how in 24 hours I would hurt so much and in 48 hours my world would be turned upside down. I think about how ready I was to be in bed for all that time so my babies would be here strong and healthy. I was ready to miss everything, the summer, camping, and my Colton and Ethan. Willy was going to have to be Super Mom and Super Dad along with trying to work.

We were going to do it, we were ready to do, we wish we could have done it.

I am not the same person as I was in this picture. And this makes me sad. I wish I could be as carefree as I was. I wish I still couldn't imagine what it was like to lose a baby. And I wish I was still expecting two more boys. I wish I was getting ready to chase four boys around my house. I wish the egg would have split a little sooner.

So here is the reason behind this picture for today. I have smiled a lot, but I have also cried a lot of tears. The ones that fall on their own and dry up on their own. Days like today are the ones I feel the most comfortable living. They are the ones when I can feel both emotions that I need to. Happiness for my family that is here with me and sorrow for the two boys that watch over me.

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's....as 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.