Tuesday November 30, 2010

Andrew's comments are killing me. Today he told Olivia to go give Lucas a hug, which totally confused her. I asked him if he thought about Lucas a lot and he said that he thinks about him all the time and prays for him all the time. Then the says to me that I don't know that Lucas' heart isn't fixed, God may have fixed it and I just don't know yet. He's right, but I tried to have a conversation with him about God's will and that it may not be his will to heal Lucas. I haven't figured out how to balance faith that God can heal with the reality that it is unlikely....how do I explain that to Andrew? His final comment was that God may just want Lucas to be with Him right away. Ugh.

Sunday November 28, 2010

As we were getting out the Christmas decorations Andrew found 5 snowmen and lined them up. He said, "this one is mom, dad, Olivia, me and this one is Lucas, I will put him by me." Later he was talking about seeing Lucas and that he thought he wouldn't get to see him but that I would see him as his head came out. I didn't know what to say. He is obviously thinking about Lucas. I told him that I didn't know what was going to happen, but if it was possible he could see Lucas. I feel like this is something that I shouldn't have to deal with let alone my four year old. Perhaps this conversation will help us decide at what point we introduce the boys to one another. I don't know.

Saturday November 27, 2010

I think that I have always believed and known down deep that the only thing I can really rely on in this world is God. I thought that I relied on God, but truly I am a proud, self sufficient person who doesn't like to rely on anyone or at least not admit that I do. However, never before have I been so broken, isolated, terrified and helpless as now. I feel that I really understand now what it means to rely on God. In the moments when I sob and cry out to Him and the times when I feel as if I can't go on, He is it. He is enough and He reminds me of all the reasons I have to take another step and keep going for my family. He shines His light in this darkness and I can see there are good things happening to me all around this situation. I have no idea how I would walk through this without his arm around me. I believe that Lucas' life will bring glory to God and perhaps this is just one of the ways that it will happen. Hope is a wonderful thing, I have hope that Lucas will be healed, and I have the hope of knowing that I will see my baby in Heaven someday.

Monday November 22, 2010

This morning we met with a doctor from the team of neonatologists that will a part of Lucas' birth. I was completely dreading this meeting and for good reason. We spent an hour talking and crying about what should be a happy day, but instead is going to be the worst day of our lives. The information we received was very valuable, but still very difficult to hear. The doctor was fantastic and we were very pleased with her. I will just outline what we discussed.
-If Lucas is stillborn we will get to hold him for as long as we wish and then he will be taken to the morgue and we will need to make arrangements for his cremation with a funeral home. After we say goodbye I will be moved out of the maternity ward.
-If Lucas is born alive, he will be brought directly to me and I will get to hold him while my doctor finishes the C-section. Then, they will clean him up and bandage his stomach. At that point we will have him with us until he passes. If he lives past 4-6 hours they will feed him with a feeding tube, t18 babies can rarely suck. I will have to decide if I will pump for him or give him formula.
-Because he has significant structural abnormalities, the neonatologist guesses (and it is purely and educated guess) that if he survives to birth he will not survive more than a couple days.

I feel like I am writing a textbook, just sharing factual information...it is very difficult to fathom that this is our reality. I can see my belly move as I sit and type this. I guess I will do my best to turn my focus to Thanksgiving and try my best to remember that I am very blessed and have a lot to be thankful for.

Wednesday November 17, 2010 (26 wks)

Slow days are torture. Yesterday was pretty calm and we spent the afternoon at home. I decided to read some of the literature from the perinatologist while Olivia napped, big mistake. It quickly turned into crying/sobbing. I think Andrew was aware of it because he had a little melt down later and was crying for a reason he couldn't really tell me. I believe there is no harm in him seeing my emotions and him knowing that Mommy is hurting because I love Lucas, but it is hard to know that my emotions effect him in that way.
Today was better because we were busy, we spent the afternoon at the vet. consulting with the doctor about the surgery our black lab will be having tomorrow. I guess that old "when it rains it pours" saying is true. I am thankful that we can fix Bear, it feels good to be able to fix something.
The neonatologists office called to set up our appointment, we meet with them next Monday. We should learn a lot about what Lucas' time will be like if we make it to term. It is going to be a difficult appointment, but I am hoping we will learn a lot about how this will all go. Knowledge is a double edged sword.

Monday November 15, 2010

Our weekend away was wonderful. It was nice to spend some time together not thinking about anything. Before we left we discussed how we want the end of this to go. We decided not to talk about a live birth scenario because we will be meeting with the neonatal team in the next few weeks and felt it would be premature to make decisions before that meeting. For a still birth scenario we decided to deliver at Olathe Med and that we would cremate. We also discussed who would be a part of the end moments. We will spend whatever time we need to alone with the baby and then close family who would like to say goodbye to him will have an opportunity. We are not going to let anyone else hold him, we feel weird about passing around our dead son. It was good to talk about his before we were in the moment, Mike and I had different ideas of what the end would look like.
The best thing about our weekend was that we gave our son a name, Lucas Richard Paton. We had liked this name before we found out the t18 diagnosis and debated about whether we should use a name we love for a baby we know we won't be able to raise or save it for a possible future baby. We came to the conclusion that Lucas is our son, our baby for however long we have him and we love him, so of course we should give him this name. It felt good to make these decisions, in a time of such uncertainty.

Friday November 12, 2010

Yesterday, my best friend in the whole world had beautiful twin girls. It was difficult to spend the day in the maternity ward, but also encouraging to know that life goes on and it will go on for us as well. This morning we met with the genetic counselor, she didn't have any information that really changed anything, but did help clarify some things for us. My first question was, “before we had trisomy 18 we could fix his heart and intestines, why can't we still do that? What exactly changed with the t18 diagnosis? The genetic counselor gave the following explanation; the chromosome error that causes t18 occurs before conception with either the egg or the sperm, there is no way of knowing. The body divides its chromosomes (because we have 23 pairs) in half basically as it forms the egg/sperm. In our situation there was an error with chromosome 18 and instead of dividing one and one it divided two and zero. Then those 2 met up with the other parent's one it made three 18 chromosomes. Because this happens at such an early stage, even before conception, this error is in every cell of his body. It affects everything from what we can see on the sono to his immune system and every system of his body. So, if we did do heart surgery and fix his heart, he would likely die from an infection or would be unable to heal because his cells do not reproduce correctly. Even the placenta has t18 because it forms from those first cells as well, that is why t18 babies are often small and die inutero. The counselor also said that this chromosome division error happens equally with all 23 chromosomes. Trisomy 13, 18, and 21 (down syndrome) are the only trisomies that ever make it to full term. The others end in first trimester miscarriages or often before a woman even knows she is pregnant. This information was very helpful for us in feeling more comfortable with future pregnancies. I should note that there are some trisomies that have genetic links and we are blessed to not have one of those.

Wednesday November 10, 2010 (25 wks)

It has been a roller coaster of emotions over the last few weeks. I have grieved and cried, but over the last few days I have become indignant and full of questions. I tend to question things, in general, I don't accept things at face value. I have a need to dig deeper and really understand. I realized that I had just accepted what this doctor had told me, that my baby would die, whether it be tomorrow or in the next few months, the end result for my son was death. Why was I willing to accept that? So, I began doing a lot of internet research. The problem with my research was that internet information is not always accurate and in reading case studies there were outcomes, but not exact explanations of symptoms and what type of trisomy 18 the child had. My research led me to more questions than answers, but I am prepared to go to our appointment on Friday with the perinatologist and genetic counselor and get some answers. I feel more in control of the situation. I guess that is something.

Tuesday November 2, 2010

I have spent a lot of time thinking about how this will all end. It is a horrible thing to think about, but I want to be prepared for whatever scenario comes our way. Mike is having a hard time talking with me about this so I booked a surprise weekend away for us. We can talk about all this and then hopefully have some fun. We have a lot of decisions to make. The easiest scenario seems to be that he will pass inutero. It seems selfish and awful to think this way, but it does seem the easiest. If we make it to term there will be so many decisions to make and what if he lives for a few days or a few weeks, it will be harder for everyone to let go. I am thankful that this is in God's hands and out of mine, that is the only comfort I can find.

Monday October 25, 2010

We muddled through the rest of the week. We made it our goal to not be idle. I made play dates and we had dinner with someone every night. After the kids went to bed, Mike and I would play video games or watch television. Anything to keep our minds off the one thing that it was impossible to forget, we were going to lose our son.
We had another appointment with the perinatologist today. He confirmed what all our internet research had said. We were going to lose our baby, it could be tomorrow or next week, next month or he could survive a few hours or days, even weeks after being born, but the end result would be the same. Talking to him made it all very raw again. It was a difficult day. After our appointment we came home and made a few phone calls, put out a request for prayer to our church and on facebook. Our son had been given a death sentence, but I still wasn't giving up. We serve a God who heals and we will continue to pray for healing. I try hard to balance my faith and belief in healing with the realism that God may choose not to heal my baby. I may never understand all this, but can only trust God has a plan for my family and my baby boy. We did our best to pull ourselves together, picked up the kids and went to Chuck E. Cheese. What better way to forget my troubles than immersing yourself in my beautiful children.

Monday October 18, 2010

What a difference a week makes. Last Monday we were eager to find out if we were having a boy or girl and today we will find out if our baby has serious problems. The doctor told us that our baby did in fact have an omphalacele, had a gap between the chambers of his heart, was missing a structure in his brain that connects the left and right cerebellum and one kidney was not functioning. The shock, disappointment, disbelief we felt in those first moments were too much to describe. Then the doctor asked me a question I never thought I would be asked, did I want to end the pregnancy. My answer was quick, no. Besides my ethical convictions, this was my baby and I would not give up that easy. He told us that the heart could be fixed, the intestines could be repaired, and the kidney was not a huge issue. The missing brain structure could cause balance and coordination issues, I can handle that. Then the other shoe fell. He said that when a baby has this many issues they look to a chromosomal abnormality that might be the root of all these problems. He wanted to do an amnio. We agreed and it was over a few minutes later. Then he said the words that changed everything, depending on the results of the amnio it may not be in the baby's best interest to fix all these problems. That is when the tears came. Before that moment, I felt like we had a big battle ahead of us, but we could do it. Now, I wondered if I would even get the chance to go to battle. We left in shock and in uncontrollable sobs. Is this real? Is this happening to us? We are in our twenties and we have 2 perfect children. What is going on? What do we do now?

Wednesday October 20, 2010
I spent Monday afternoon and all of Tuesday making my battle plan. I did not allow myself to think about the worst case scenerio. I was making plans and preparing for a long stay at Children's Mercy. We could do it. I had childcare lined up, people to take the dogs out, a schedule for when I would be at the hospital. I was ready. We told all the family and close friends, they were right there with us, ready to go into the most important battle we had ever fought.
Wednesday morning felt very different. I took Andrew to school, cried. I took Olivia to gymnastics, cried. After gymnastics I was hysterical and couldn't face going home. I called my mom and she came over right away. She was only in my house for about 2 minutes when the phone rang. It was the doctor, the amnio results were back. I took the phone down the hallway away from the noise of the living room. I was half way down the hall when he said its trisomy 18. I collapsed to the ground in a kind of hysterics I had never experienced. I couldn't see, think, hear or breathe. I handed the phone to my mom and she talked to the doctor, he told her most babies, boys especially, don't make it to term. She held me in the hall for a few minutes and then I asked her to call my husband. She told him the doctor called and he needed come home immediately. I can't imagine what his drive home was like. When Mike arrived 15 minutes later I was still in the hallway. I mumbled that it was trisomy 18 and that I was so sorry. We held each other and cried for a long time. My mother-in-law came and picked up Olivia and got Andrew at preschool. My dad, Mike's dad, and my best friend came over. Other people came later. They cried with us and then tried to keep our minds occupied. It is all kind of a blur. I cried on and off throughout the day as more things came to mind. There were so many decisions....if he makes it to term what do we do? How do you sign a DNR on your baby? Burial or cremation? Should we buy 3 plots so we can be buried with his someday? What do we tell Andrew? How do I get out of bed tomorrow? How do I spend the next 4 months waiting for my baby to die inside of me. It was all too much. I cried and prayed and did my best to be there for my children. I had survived the worst day of my life, but I knew a far worse day was coming.

Friday October 15, 2010

We saw the doctor and our nightmare began. He told us our baby had a omphalcele, his intestines were in his umbilical cord. He mentioned that there were other concerns with his heart and brain, but that we shouldn't freak out. He referred us to a perinatologist. It was Friday, we had to wait until Monday.

Wednesday October 13, 2010 (21 wks)

My ob/gyn office called to ask if I could come in on Friday to discuss my sonogram results with my doctor. This had never happened before. I was nervous. I called back and asked if this was normal, the nurse said it wasn't out of the ordinary and I had nothing to worry about. I worried anyway.

Monday October 11, 2010

We went in for our 20 week sonogram eager to find out whether we were having a boy or girl, that was our only concern. Our sonogram took well over an hour. The sonogram technician said she was having trouble getting a clear shot of his heart. She called in someone else to help. We left feeling like our sonographer was a bit inept, but we weren't concerned about our son. We were so excited to tell our older son, Andrew, that he would have a baby brother, he was very excited too. It was a great moment. We told all our family and showed off our beautiful pictures.

How it all began....

I knew I wanted to have a third baby while I was still pregnant with my second child. When she was 15 months old we decided to try for number three the following month, but we didn't have a chance because we found out we were already expecting! My due date would be February 23^rd, 2 days before my birthday and about 2 weeks after my daughter's second birthday. It all seemed quite perfect and things were going just as we had planned.

My pregnancy seemed normal (for me). The morning sickness started around 7 weeks and I began taking medicine to combat that. I was tired and pukey, but it was what I expected. What I didn't expect was the lack of joy I was experiencing. I didn't feel the same excitement that I had with my previous pregnancies. My best friend had experienced two miscarriages in the last year and I figured I was just nervous and tired.

At 8 weeks I began spotting. I immediately called my best friend and I assumed that my pregnancy would end as hers had. I saw my doctor, he told me to take it easy, but there wasn't really anything we could do at this point to save the pregnancy. I laid around for 2 weeks while my mother-in-law, mom, husband and others took care of me and the kids. The bleeding stopped and I began to relax some, but I never felt the joy or peace I had experienced with my other pregnancies.