Markers and a rainbow


This week has been one of the hardest weeks we have had in a long time. This week was our second daughter Willow’s 20 week anatomy scan. We drove down to the perinatologist office (high risk OB) to have the level two ultrasound done Monday morning at 7:45am. We watched patiently as they did the ultrasound and was hoping for the best. At the end of the appointment the doctor came in to discuss the ultrasound. She started out by telling everything looks great; All the organs looked good, good connections and so on. Then she says there are two soft markers for down syndrome that we see. Willow has a shorter nasal bone and her femurs are shorter too.

Our heart sinks and our minds start to race. The doctor doesn’t seem too concerned about it but, we are terrified. We ask to talk the genetic counselor to take a blood test to find out if our daughter has any chromosomal abnormalities. She explains that she does have markers and they can’t say one way or another if she has a chromosomal abnormality. She says that they are seen in down syndrome but can be seen in chromosomally normal babies also.

We get the box for testing and go down the road to another hospital for my blood to be drawn. They say I should find out the results in 7-10 days. We drive home silent and scared. We had a whole day together planned and now we just want to get home to lay down before my regular doctor appointment in the afternoon. We met with our doctor that afternoon and she was hopeful that everything was ok but concerned by the news we received earlier that day.

After we got home I began to unravel. I am doing the last thing I should be doing…. Searching google. I was terrified but what I was reading. I got so anxious I began throwing up Monday night and couldn’t get food down for two days. I stayed in bed until Thursday. Paralyzed by anxiety that was consuming me. I was trying to read every medical article, blogs and other people’s experience trying to find answers. Even though I knew that it didn’t matter what someone else’s experience is until we find out the answers to ours. We both didn’t sleep all week and were walking zombies.

Just trying to wrap our heads around what was going on and thinking about some of the worst outcomes. Thinking about the struggles our daughter would have and what our future was going to be. Was this it? Is this our family? A child that had died, a special needs child, a diagnosis that would put us into an increased risk category for other children, and our we really done having children?

I felt so horrible to be so afraid of the unknown. I felt scared and I couldn’t understand how this could happen to us after losing our first child. I mean how could I feel sad about a special needs child when I know how lucky we are just to have the gift of having a child. Still the anxiety consumed us and the fear raced through our minds.

Finally today at 2pm the genetic consular called to let me know that Willow is Okay and she doesn’t have any chromosomal abnormalities. The phone call was such a relief and I started to cry as we were talking on the phone. I was so happy to get the phone call before the walk for Berkley tomorrow so that we can be there mentally and not to have this weight on our shoulders. We are so grateful that we have one less thing to worry about and that our daughter is just fine.



Our Beautiful Rainbow

Our Sweet Willow Beatrice. I cannot believe you are already turning one. This year has gone too fast.  We were already parents but, you gave us a gift of being able to raise you as you grow. Watching you grow is so amazing.

You joined our family at a perfect time. You brought color back into our world and filled in some of the cracks of our shattered hearts. You are so beautiful and full of life. You are just what we wished, hoped and prayed for.

Words cannot describe how beautiful you are to us. You are so small and you can already captivate a room. We spend so much time just watching you preform with your silly personality. Pointing at everything you see and asking, “What’s that”? or shrugging your shoulders to make us laugh even harder. You are so kind and gentle. You have brought so much love into our family.

We can see so much of each of us in you. You can be sweet yet sassy like your momma. You sit back and observe before you act most of the time like your dad. You love to study things and try to figure out how they work.

We just stare at you in amazement that you are really ours. I don’t know how we got so lucky to have you in our lives. We don’t take one second with you for granted. I pray every day that you have a full beautiful life. Every night I thank God for another day with you and ask him to protect you.

Willow my dear, You are loved more than you will ever know. One of the best gifts we have ever been given. I hope the years move slowly so we soak up every second of your beautiful life. Happy first Birthday my beautiful Daughter.

Waiting on Willow


Waiting on Willow to make her safe arrival was the second hardest thing we had to do. When we found out we were expecting our second child last May we were so excited, scared and hopeful. The summer flew by and it was the happiest we had been since Berkley died. In September it was like the rug had been ripped out from under us. At our 20 week ultrasound they saw a few markers that were concerning to them and we had to do additional testing. We spent a week losing our minds. I literally stayed in bed for 3 days trying to search the internet. We were paralyzed by fear and  upset thinking we never get a break in life. The end of the week we got a phone call telling us that the testing came back normal and Willow was healthy. We both felt a wave of relief but, at that point the pregnancy wasn’t the same.

I don’t know if it was the panic that changed it or the fact that I was getting farther along into my pregnancy. Approaching the point of loss with Berkley. We also had to get through the Fall. The season that stole our daughter. Every leaf changing brought me closer to the day that my daughter slipped away. I couldn’t believe how much a season can crush you and bring such intense pain rushing back. We made it through the month, the year marker of when she died and her birthday. It all sucked but, we did it.

We started weekly monitoring the first week in December. We had to go back to the room that they did the last ultrasound to confirm that Berkley died. Ever time we did the ultrasound I would just lay there tense, scared, and disconnected. I was scared it would be the last. She passed all of the ultrasounds except the third week. No movements or breathing for the whole 30 minutes. Watching that tech search for what she is looking for knowing things are off was terrifying. She had passed a NST scan right after she failed the first scan. We also had another ultrasound that evening to make sure she was okay and she passed right away.

img_3599.jpgWillow had hiccups every single day after around 30 weeks. She would have sometimes 7 episodes a day. I saw on several stillbirth resource websites and a doctor that specializes in researching cord issues stressed that hiccups should not be occurring this frequently or after 32 weeks. It could be a sign of the baby’s cord being compressed. So it felt like Willow also was going to die and no one would listen to me. Every day would start okay but, on the days where she was on her 5th or 6th episode of hiccups I would be beyond anxious. The hiccups made me lose my mind. It is so hard for me to explain the fear of losing a child. Something so innocent as hiccups to a mother that hasn’t lost a child sounds silly but, to a mother that has it’s a different story.

At the 20 week appointment we had set up a plan for induction at 37 or 38 weeks. Something that I was so relieved about. We were going to be able to have her delivered before the point of loss when Berkley died. Hell week, 39weeks. When that time came we drove back down to the Perinatoligist’s office for a meeting to schedule the amniocentesis to check Willow’s lung function. At that appointment we met with a different doctor, a doctor that didn’t agree with her partner’s plan. She was condescending, cold and made us feel horrible. I started to cry as she ripped our plan away from us. That was the first time I had cried at a doctors appointment ever. At the end of the meeting she called the other doctor that made the recommendation to see if she would proceed with the plan that they originally created 17weeks ago. Even though she stressed how much she disagreed and made us feel horrible. At this point we were questioning what we should do. We were so confused and upset.

We decided the day before the procedure was scheduled that we would do the procedure. My main doctor was confident in the procedure and we trust her more then anyone. The actually procedure wasn’t as bad as I would have thought. They stuck a needle and tube into my uterus to pull Willow’s amniotic fluid. They didn’t numb anything and I could feel the pressure of the tube. Whenever I took a breath I could feel a tube in there which caused me to panic. Besides that everything went great. We were told to go the hospital the next morning to be induced. We were still waiting on the test. There were supposed to be two tests. One that comes back within two hours and has higher false negative results then the second that was more reliable and took longer to receive the results.

We went to the hospital that Thursday morning and were told to head up to labor and delivery floor. They brought us to our room as we waited for the results I had a feeling it wasn’t going to happen that day. I was right but, I was okay with that. I was expecting the results to come back not mature since there is such a high rate of false negatives with that test. Her results were borderline so we were hoping that Monday we would be getting the results of the second test. The ones that the Perniatologist stressed to us are the reliable ones, the ones that don’t produce a lot of false negatives. I called to see if they had the results of the second test. I talked to a nurse that told me they never ran the second test… She read in the notes that they didn’t have the equipment to run that second test.  The Perniatologist called back shortly just to let me know they didn’t run the second test because, the first one came back borderline. Once again with that office the plan or what was explained to us was changed.

It was heart wrenching and I didn’t know how I was going to mentally get though one more week. At this point we were so shut down emotional and disconnecting from everyone. We had an appointment set for the next Monday for the induction. Hell week, 39 weeks. The day her sister died, would end up being the day she was born.

I’m grateful for the little things

It has been a little over a year since our daughter Berkley passed away. This year has been hard and complicated to say the least. We have learned a lot this year about pain, ourselves, the grieving process and the world we live in. The loss of our daughter has changed how we look at the world. It has made life harder, it has made us more grateful and it has given us a deeper understanding.

At times it is very exhausting having to carry the weight of the loss. The first year felt as if we were just trying to survive, grow and understand the pain. We would celebrate our small victories moving through the grieving process. We started to participate in life again and actually began to enjoy it again.

It taught us a lot about ourselves and made us go through an existential crisis. We questioned the meaning of our lives and what the purpose of our life is supposed to be. It’s not an easy thing to do when you are in deep grief but, I guess that’s when it happened. It made us look at every aspect of our lives. The good and the bad. It is hard and it is painful. At times we feel very lost still and it’s hard to make decisions.

Losing our daughter gave us a deeper understanding of life and compassion for other people. I have seen people lose children before but, I couldn’t have imagined the depth and length of pain they endure until we experienced this pain ourselves. It made me look at other people that are struggling with their own battles with mental health, sickness, loss, personal issues, addiction, or any other thing a person has struggle with in this life. I know now that I will never know what they are going through. I know now that I don’t have a right to pass any sort of judgment on how they handle the battles they are enduring. We are so unique, we have different coping mechanisms, and all have been given different battles.

I know for me it was the little things that helped us survive, heal and helped us learn to live again. It was the friends and family that stood by our sides. The strangers that reached out to us. The random letters, messages and people reaching out to us months after we lost our daughter. It was the people in our lives that waited for us to return. It was being told after months of not being myself that someone saw a glimpse of the “old me”. It was when people would tell us it was nice to hear us laugh again. It is when you bring up Berkley in a conversation, when you still ask how we are doing, when you still allow us to have rough patches and when you haven’t put a time limit on our grieving process.

We wanted to do something in honor of Berkley and we participated in the Hope and Hearts walk for the Missing Grace Foundation. We set out just to walk. We hoped a few people would walk with us and maybe raise just a little money if we were lucky. We ended up having a large group of our friends and family join us and  we raised $3,300. We had many people that we love donate and reach out to us that couldn’t make it to the walk. We are beyond grateful for everyone that supported us.

With everything we have endured this year we are grateful for the little things. Thank you for allowing me to say my daughter’s name. Thank you for standing by our sides and being patient with us as we travel this journey. Those may be little things to you but, the mean the world to us.