Kelly

Mom to Colin Martin
December 12, 2013 to December 14, 2013  

and

Nathan Daniel
December 12, 2013 to January 7, 2014

The 2013 Holiday season was nothing like we were expecting and was not full of joy and happiness like it should be. It was the day before Thanksgiving and we had our routine ultra sound with the Maternal Fetal Medicine doctors. We were pregnant with identical twin boys and we got to see them every other week in an ultra sound. When we first found out we were having identical twins, we got referred to the MFM doctors to monitor my pregnancy for Twin Twin Transfusion Syndrome. This is where a connection in the shared placenta is distributing nutrients unevenly and one baby gets bigger than the other one. 

We were 22 weeks and 4 days gestational age at this particular ultra sound. We were excited because both my parents and my father-in-law were in town for Thanksgiving so they came with us to the ultra sound so they could see their grandsons wiggle around! Towards the end of the appointment, the Doctor told us that it seemed like the boys were in the beginning stages of Twin Twin Transfusion Syndrome (TTTS). Up until this point, everything with their weight and their growth had been similar and very good. They noticed that Baby A, who we had named Colin Martin, had 10 cm of amniotic fluid in his sac whereas Baby B, who we named Nathan Daniel, only had 2 cm. In the beginning of our pregnancy, they explained to my husband, Kevin, and I that they look for the TTTS and if we had it there is a laser procedure that could be done to hopefully fix the arterial Venus connections that are mis-distributing the nutrients and blood unevenly. To me at the time, that sounded like an easy fix.

The Doctor said that he wanted me to go home, enjoy a nice Thanksgiving with my family, and then come back the day after for another ultra sound to make sure things didn’t progress significantly in 2 days. So we left the appointment and I was very optimistic about this. Kevin’s mom had died from Cancer 6 months prior in May so I didn’t think she would let anything happen to her grandsons. But once I got into my car to drive home, I broke down. I realized the severity of this disease and I could potentially loose one or both of my babies. The feeling of the unknown was scary and that was just the start of it.

Thanksgiving I cried most of the day. It was hard to enjoy myself wondering if my boys were in any sort of discomfort. But we went back the next day to the MFM doctor to get more information. Ultra sounds from then on out had a touch of sadness and worry behind it. Although I love looking at my sweet boys, I didnt know what they are feeling or if they are suffering or not. At this US I just started crying while we were looking at Colin’s heart because all I could think about was that his heart couldn’t handle all this extra fluid he was receiving and I was scared.

The Doctor said that things had not progressed a large amount but he would still like me to go to Cincinnati Children’s Hospital to get an evaluation done to see if we would be candidates for the Laser procedure or not. So that following Monday night, December 2, Kevin and I drove down to Cincinnati. Tuesday the 3rd day evaluation. The boys had an MRI, an intensive ultra sound and an echocardiogram. That night we met with the surgeons to discuss the results that they found. They said that we were eligible for the laser surgery and if we wanted it, then we would have some decisions to make.

We decided to do the laser but now we had to give them answers to all the “What if’s”. Now our boys would be 23 weeks and 4 days gestational age the day of the surgery. If something went wrong and they were born, the chance of survival was 50/50 and if they did survive then they would most likely have a severe handicap. So we had to tell the doctors what to do IF one baby starts to go under. We could either deliver them both, and hope for the best outcome (which was slim), or we could let that baby pass on and give the other baby a chance to go more weeks in my belly. But if both started to go under, we could deliver them or let them both pass. If they both survived and had a severe handicap, my life is now devoted to taking care of my 2 babies (which I would absolutely do, no questions asked) but what kind of life would that be for them? Very tough decisions. If one baby went down, my husband and I decided to do “Last Man Standing” which is letting that baby pass and give the other one a good chance to go longer in my belly. We just gave permission to let one of my babies die. To tell you we were crying while discussing this is a complete understatement.

The next morning was my laser surgery. I was not scared at all for myself. I would do anything in the world to protect my babies. I would give my life for them if that meant both of them could live happy and healthy lives. So I was not nervousat all except for their safety. They rolled me in to the O.R. and I was put under anesthesia. As I started to come to, they were finishing up and all I remember asking was “How are my boys?” The doctor just said that they would go talk to my Husband but they both were alive.

In the recovery room, Kevin and the surgeon came in and stood by my bed. Kevin was crying and I was confused. If they are alive, then why was he crying? Apparently the surgery was unsuccessful. There were certain veins that were too big to cauterize and the tools they had would not fit around the veins. And since you have to get all the veins and not just some of them, they were not able to do the surgery. My babies still had TTTS and on top of that, my uterus is now irritated and pre-term labor was a risk.

They transferred me by ambulance next door to University Hospital of Cincinnati to be monitored in their Labor and Delivery Unit. I had 2 heart monitors and 1 contraction monitor strapped to my belly. I would have contractions but they never once were painful and they were just every now and then so the doctors weren’t worried about that. But once again, the unknowing of if and when my babies would be delivered was frightening. The goal was to stay pregnant but I can only do so much. My boys would make that decision for me.

A few days went by and Kevin and I became very good at reading the monitors and one morning, Nathan’s heart started to decel. I got very nervous and although that is something normal that babies do at that gestational age, Nathan was doing it a bit more which could be concerning. They had moved me to anti-pardum (not as closely monitored) the day prior so they moved me back to Labor and Delivery to be closer to the O.R. just incase things got worse and they needed to deliver them in an instant.

At this point, “Last Man Standing” had a whole different meaning that we didn’t realize until now. Since they were still connected due to the failure of the surgery, if one baby went down, then it would only be minutes, if not seconds before the other baby went under. So if one baby went under, we were going to deliver them. A few more days went by and the morning of Thursday December 12, Nathan’s heart started to decel again so they did an ultra sound. He had some points where there was absent blood flow in his heart so the doctors told me that they needed to deliver them in the next 2-3 hours.

I was terrified. Again, not for the surgery, but for their well-being. We knew now that they were being delivered but the unknown of if they would survive was still lingering and what the next 3 months would look like. The day your babies are born is supposed to be a happy time when you take pictures and smile. Instead we were crying. They pumped me full of magnesium which is supposed to help their brain function since they were so premature. They were 24 weeks and 5 days. They wheeled me into the O.R., gave me an epidural and then at 3:13 pm, Colin Martin came out followed by his brother Nathan Daniel. Colin was 1 lb 9.3 oz and Nathan was 1 lb 2.5 oz. They were whisked away to the NICU after I got a quick look at them.

I didn’t really get to spend time with my babies that night because I had just had surgery. But the next day we went down and the Doctors told us that Colin was not doing very well. He had high potassium and his kidneys weren’t working. We knew they were telling us that he was probably not going to make it but just not that direct. Nathan was doing fine at this point so we would spend most of our time with Colin since they were in different PODS. I would just sit with him and hold his little hand crying. “What would I do with out my precious baby boy?” I told him to keep trying and that his mommy and daddy love him so much! That night we had both the boys baptized. This was another milestone moment that you should be happy about but we were crying through the whole thing.

The next day I found out I was able to help with Nathan’s care. So we made sure we were back in the NICU at 6 pm that night. I got to change his diaper and hold up his feeding tube. I loved every second of it. After we were done, we stopped by Colin’s bedside to say “hi” before we had to be out of the NICU for shift change. His nurse said things had changed since we were there last and he wasn’t doing well and he wasn’t going to last much longer. We told them to not resuscitate him because unless it would bring us a lifetime with him, we didn’t want him to continue to suffer. We left to tell our parents (they were waiting for us with dinner in the waiting room). We told them that he wasn’t going to last much longer and that they would be allowed in the NICU to say goodbye.

At 7:30 pm I went in my room to pump and Colin’s nurse called me and told me Colin’s heart was going down and that Kevin and I needed to get down there. So we rushed down to the NICU. We decided to let them breathe for him and bring him to me in a closed family room where I could hold him for the first time. So they did that and I held him for about 20 seconds before his heart stopped. My baby died in my arms and I was devastated. His grandparents got to hold him as well but Colin was now with his Grandma up in Heaven. I will tell you right now that walking away after holding his little body for an hour was the hardest thing to do. That wasthe last time I would see him other than in pictures. I didn’t know someone was capable of producing as many tears as I produced.

The next day was hard but we went to visit Nathan and he made it a little better. I got to do Skin to Skin with him! I didn’t know it was possible to be so Happy but yet still so sad at the same time! So the next few weeks Nathan was doing fairly well. He had a rare blood infection but he didn’t act like a sick baby. He would move his arms and legs a lot and that made us happy.

We got through Christmas and then the weekend after, Nathan’s kidneys slowed down and actually stopped working for a day but then started up again. That scared us. Because he wasn’t getting rid of a lot of fluid, he had puffed up with edema. He became very swollen and more swollen as the days went on. Monday the 6th of January, his belly turned purple. The Attending Doctor said he was hour to hour and that his body was telling us that it just can’t handle the real world. His skin became very sensitive and formed many blisters that would bleed a little bit. It was so hard to see. Here I am, his mother, and I can’t do anything to help him but love him. If love were a cure, Nathan and Colin would be home with me right now but unfortunately, Love is not enough.

I had to be touching Nathan otherwise I wouldn’t feel like he was being comforted. We slept at the NICU that night right by his side. He was the only baby in isolation so we had the whole room to ourselves. I would just tell him that I was not mad at him for wanting to leave and that I would miss him and always love him. His brother wanted to play with him and grandma would take care of him.

The next day his heart rate slowly started to go down. At his 4 oclock care, I asked what would happen if I held him. He was so sensitive because if you messed with him, his body would turn purple but his numbers were pretty stable. I wanted to hold my baby and I didn’t want to never hold my baby alive again but I felt that if I held him, I would kill my baby. Kevin thought I should hold him because he thought Nathan would like to be in his mothers arms and be comforted by my heartbeat. All the doctors thought it would be a good idea too. His nurse got him out and put him on my chest. His ventilator was still going so it seemed as though he was breathing. But after 15 min, I asked them to check his heart and it had stopped. This is my second baby that died in my arms.

Once again, walking away from his little body was very difficult. I could have held him forever. We loved our sweet sweet boys and we will miss them every day of our lives. I am not handling their loss as well as my husband. I think all moms can agree with me when I say that a mothers love is completely different than a fathers. We have a connection with our babies even when they are in our bellies. No parent should ever have to have their babies ripped from them and feel the kind of pain that I feel and no baby ever deserves to die.

If this journey taught me anything, it is that I HAVE to be a mom. I know I AM a mom to Colin and Nathan but I want more kids and I am determined than ever to have them. One thing I know is that our future kids will have the best big brothers watching over them.

FOREVER IN MY HEART: COLIN AND NATHAN

 

Below is a poem that was given to me and it represents what happened perfectly.

God Saw You Getting Tired

– Anonymous

God saw you getting tired,

And a cure was not to be.

So He wrapped His arms around you,

And whispered, “Come to me.”

With tearful eyes we watched you

And saw you pass away

And although we love you dearly

We could not make you stay.

A Golden heart stopped beating

When He gave you rest.

God’s garden must be beautiful

He only takes the best.

 You can contact Kelly at kmdorman@gmail.com

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