Monday, December 1, 2014

Incomplete Holidays

Christmas has always been a favorite holiday for our family. Stringing up Christmas lights, putting ornaments on a tree, hanging stockings, it has always been such a happy time of the year for us.

The year that Nash died we put up our Christmas tree that very next week. It brought cheer and happiness back into our home again.

This Christmas feels different.

It is the first Christmas where my bright holiday cheer is clouded with feelings of sadness and loss. No matter how many smiles I have while hanging stockings, or setting out my Christmas d├ęcor—there is a hangover of grief that follows. It makes those cheerful feelings uneasy and jumbled. It makes me wonder and question what Christmas “should have been” for our family. It is the first year where we should have a brand new baby, with a brand new stocking, not just an ornament in remembrance. Something constantly feels like its missing.

This year our Christmas card looks much different than what we originally expected. We have a stuffed bear with recording of Max’s heartbeat instead of a newborn. Our family is well dressed and put together; we are exhausted but not newborn exhausted—grief exhausted. We are a family who looks complete on the outside but feels very incomplete.

How do I even begin to positively incorporate Max into a cheerful and joyous holiday when I am filled with such despair that he isn't here to celebrate?

To that I am sure we will find a way but it doesn’t make me okay with it. We have figured it out for the last 5 months and I know we will figure it out this month too but it is a hard time of the year to “wing it”. One year ago I would have never thought we would find ourselves here, trying to figure out how to make it through our first Christmas without our 3rd baby boy.

Monday, November 3, 2014

Bricks and Mortar


Andrew and I love road trips. We love road trips because some of our best memories together and best conversations have happened during road trips. I don’t quite know what it is but we always know a car ride is a great time for us to connect. I’ll never forget our first road trip to Andrew’s home, 5 ½ hours north, a little over a month after we met right after fall semester finals were finished. Or the time we were on a road trip through Texas and had to drive up the coast from Corpus Christi to Galveston and never even turned the radio on.

Nowadays, a road trip or just going for a drive allows a little bit of peace and quiet while our boy’s nap or watch a movie and usually involves a stop at Dunn Bros.

The road trip to and from my parents a few weeks ago was another great conversation.

Andrew and I got on the subject again about the loss of Max. In a more matter-of-fact manner we discussed how upon receiving Max’s fatal diagnosis we were extremely concerned about the future of us. Remembering how PPD and PTSD almost tore our family apart after the birth of Jack, we both agreed we had no idea how we would weather this storm at first. Besides the fear of grief and loss was a fear of loss on an even deeper level—our family.

We began to just reflect a bit on how we got here, almost 5 months later, still standing and still standing strong. He began to paint such a great picture in my head about our family and what that looks like I thought it was an awesome analogy to tell you about.

Andrew explained that families in general all start with a foundation. It can be built on many different things-- good or bad. A foundation is a foundation. Foundations that are well built with love, compassion, and receive ongoing care are strong. We know that and fight to keep our marriage and foundation strong every day.

After a foundation is laid comes the bricks. The bricks are all the tangible things in our lives that build a solid shelter around us. Things like our family, our jobs, our home, are all part of the bricks we use to feel safe, strong and construct more on top of our foundation.

 The mortar is literally what keeps the bricks together and sturdy from crumbling on top of us. The mortar of our shelter is the intangible things in our lives. It is the friendships we have, the faith we rely on, date nights, family memories, and everything that makes us realize how beautiful life here is.
So why was this so enlightening and helpful?

Andrew and I agreed that the earthquake of Max’s diagnosis hit our shelter hard. It shook our foundation to the core; it cracked a few bricks, and broke up some of that mortar that we had. We still feel the aftershocks and ripple effects. There is still the apprehension and worry to go out into the world again, wondering if another earthquake with hit us hard enough to really make us crumble.

 Even though we live with the concern that our shelter cannot take much more, we have chosen to rebuild and repair the damage and that has helped us the most. Just simply making the choice to wake up each day and get out of bed we are continuing to rebuild and repair. We have continued to create family memories, went on a date night or two, and honored our son, Max who we cannot take care of here. We created even more mortar in our lives, to pack into more bricks,that will allow us to build higher on an even stronger foundation than before.


The cracks in our bricks will never be forgotten though, no matter how much mortar we pack into them. There is still evidence that something indeed tragic happened. But we wouldn't want it all to look neat and pretty anymore because that wouldn't be a true reflection of our lives at any point. Our patch work tells a much more humble and thankful story now.

Wednesday, October 8, 2014

#HelloMornings

Tomorrow is Max's due date.

10/9/2014.

Although I have always tried to be a big "guess date" person instead of "due date" I still know what this day could have been like if Max were healthy. I can easily imagine myself, 50 lbs heavier, mismatched clothing,frazzled, 2 other kids, waiting to snap at the next person that asks if I was due last week.

Our team wore these ribbons I created for the race.
I would give anything to have that back. Swollen feet, even more stretch marks, no makeup, exhausted. I would do it all (and have no complaints!) if it meant I would end with a living, breathing baby in my arms.

It's been hard to imagine what life could have been like this month, and even harder to imagine how this month could have positive things in it. But there were.

One of the biggest highlights of this month has been the TC 10 miler. What a truly amazing day. We were surrounded by so much love from others and our team. Everyone worked so hard for their own goals and yet still strived to honor our son, Max. It was such a happy day for us.

But then I had to deal with this week. As quickly as the feelings
of love, positivity, and honor flooded me and had me on cloud 9, my grief came back with a vengeance. This week emotions have been raw--reliving the end raw. I have struggled to focus, to function, to sleep. I keep thinking about Max. The last few moments I held him, kissing his sweet little face and then saying good-bye. Much of that whole experience in June was just numbing, I couldn't process it all. Now, four months later, I am being dragged back in, kicking and screaming to deal with the emotions I didn't even have in June.

I keep trying to do my normal routine but haven't been able to shake my anxiety, stress, and aggression.

But I hope I found something that will help.

I came across a Facebook post for a Bible Study called #HelloMornings. A 6-week Bible study that you begin with every morning. This session is on the book of Matthew. Essentially one wakes up early in the morning (in my case extra early) to spend sometime with God. You do a short reading, reflect and respond, do a little daily planning including 3 short goals to accomplish and finish it off with some movement. I am hoping to do a 10-15 minute yoga session.

I tend to be impulsive, so I read about it, signed up and now have it ready for tomorrow morning. Let me know if you would like to join me :). Accountability is a wonderful thing.

Just like Max's full-term, healthy birth would have been the beginning of a big-joyous change for our family, I am hoping this some positive shift in my perspectives as a bereaved mother. I envision my goals starting out as: manage my stress, staying positive, get a grocery list together, be okay with feeling sad. At he end of the 6 weeks I hope can feel more relaxed, cleansed and ready to integrate more of Max in my life without being so sad all the time. Hopefully my goals will follow suit.

Here's to hoping that the next 6 weeks are a great learning experience about myself and God.

Wednesday, September 17, 2014

It was just croup!

Parker was sick last night. He had croup and I knew it. 

He had the typical barky cough and irritated larynx that began yesterday morning. I watched him progressively get more barky as the day went on. However, croup is a *funny* virus in the sense that it can completely freak you out as a parent because it can cause some breathing discomfort but its bark is almost always worse than its bite.

And after three babies I know exactly what croup is and exactly what to expect. I know the whole cold air trick to help with the irritated larynx, humidifier/ steamy shower trick, and propping the mattress to help elevate the child's head. I also knew, and expected, that when I laid Parker down for bed last night that he was going to have a tough time falling asleep. I even called my mom to give me some input on whether I should be concerned or not. But sure enough 20 minutes after he fell asleep he was up coughing, and struggling to get comfortable.

What I didn't expect was for both Andrew and I to look at each other and admit that it was really hard not to get anxiety and worry built up that it might be something else(Que flashes of enterovirus 68 news reports!). Andrew and I kept Parker's video monitor on the highest volume so we could listen to Parker breathe in hopes of catching it if it got worse. 

I was trying to keep Andrew and I's anxiety at bay by baking some pumpkin-oatmeal-chocolate chip cookies with Jack. Sure enough when Parker awoke, and we heard our little guy crying in discomfort we decided that I would take him to urgent care.

Like I said before, Parker was not in any distress, he was not struggling to breathe, and I knew he had croup. But I still couldn't shake my anxiety. Even Andrew, my calm, cool, and collected parent was encouraging me to take him in. Sure enough, we arrived at urgent care, and were seen by the doctor. Parker was at 100% oxygen levels, we were given an oral steroid medication to help with inflammation, some apple juice to wash it down, and sent home. It all was done within about an hour. 

I knew we overreacted. Even texting Andrew at the clinic we both agreed it was croup but we just couldn't chance it. Like most parents our worries are endless with our children but after the loss of Max, our worries feel endless to the Nth degree. We just couldn't chance it. Breathing was not something we were going to mess with. I wanted to tell the doctor, "Look, I know you are wondering what the heck I am doing here, but my other son died and I can't do that again. I can't take a chance right now, in the stage of my grief that my other child is fine." We needed validation and someone else to tell us it was going to be okay. 

I am not mad at myself for going last night. I am glad I went to urgent care, got Parker more comfortable and made it so Andrew and I could get some sleep last night. And I know I won't always be like this and I am thankful that my anxiety was only being tested with a nasty little virus and not something very serious. But sometimes I still get irritated at the fact that after dealing with the loss of my child I am utterly aware that bad things do happen, no matter who you are. I enjoyed my blissful ignorance in the previous life I lived. But right now playing it safe and getting some sort of validation from a medical professional that Parker was fine was what I needed in order to feel at ease. It's not that I doubt my intuition as a mother, rather that I knew what it was and needed to know that I was right and not wrong. I was so convinced that Max was fine, only to find out that I was terribly wrong. I need to prove to myself sometimes that my mom intuition does work. 

Sure enough Parker is going to be just fine. He even slept comfortably for the rest of the night (even thought I checked on him a few times--just in case).

After all, it was croup, and I knew it.

Friday, August 22, 2014

Grief is like an addiction

I never thought the question "How are you doing?" could ever make me feel so perplexed. It is the hardest question to answer these days. However, a lot of people do often wonder and ask, "How are you doing?"

I was toying with the complexity of this question early on after Max passed away and the difficulty I have answering it because I generally feel emotions of two different people. I feel emotions of sadness, anger, grief while still feeling happy, talkative, and celebrating my silver linings. My outward display of grief can be somewhat turned on and off but it is still always there. I honestly feel comparable to person who is struggling with addiction sometimes. (Let me explain).

Shortly after Max's death I came across a blog post from another mom of loss while dealing with this tough question. There she described herself as a "high-functioning bereaved mother". 

That was it! I finally had a handle on how to describe myself and begin to answer the question of,  "How are you doing?" She explained how she can make dinner, go grocery shopping, take her children to soccer practice just like anyone else yet always had this nagging grief along for the ride, ready to ignite and bring her right back to the toughest moments of her life. There isn't always a physical display of grief while going through the motions of life after loss. There also isn't a big sticker across your forehead the says "I lost my baby" but someday's it sure feels like it.

Living as a bereaved mother is like living as a high-functioning __________ (<--insert unattractive issue here: alcoholic, drug addict, etc. ---in my case a bereaved mother). I am living as a high-functioning bereaved mother. 

I strive everyday to look and feel like a normal person, when I know I'm not. Loss like an addiction can be something that I feel I need to hide yet very exposed with regardless. When I am out in public, spending time with my boy's, or working out I often ignore my grief. I push it way down into the depths of my being to at least try and "enjoy" something again. I don't want my grief to take over my life like an addiction can. I want to be a normal person (<---whatever the hell that even means) for just a little while. I am still a mom to two boys here on Earth and have a wonderfully supportive husband; I do need to more forward. Regardless of my struggles, this world keeps turning.

Yet, at the end of the day or at least at some point everyday, my grief bubbles up and takes over for a bit. I can't "escape" and when it hits me again like a sucker punch to the face, a very welcome sucker punch....oddly just like alcohol might to an alcoholic, I'm soothed and relieved swimming in grief for a little while. I try to resist as much as I can to go back to a very painful place but "giving-in" for a bit does make me feel comfortable. I can be me when I cry or look at pictures of my little boy. The relief comes when I don't have to hold it in and don't have to hide my loss. 

Addiction like grief functions in a very similar way. Just as some people are addicted to alcohol as their relief from pain, I welcome my grief as a relief from my pain. Also, addiction like grief can be ignored, you can pretend it isn't there and even lie about it when someone asks about it. But at the end of the day, you give in to your addiction (for me, I give into my grief) and for a while there is that temporary sense of relief. 

Now, I hope that this comparison does not make you worried that I am headed down the wrong path to healing every-time my grief bubbles up. I am not. I really am healing. Slowly, but surely. I do enjoy taking care of my boys, cooking dinner, and having a glass of wine with my husband. This part is definitely not a facade. And my grief does not always feel as raw or painful. Do I still cry and long for my sweet Max? Yes! But a lot of days I can sigh and smile at the adorable face in the photograph. I can be thankful for meeting him and my days of feeling completely broken are getting father apart. The pull between functioning and living is finding a more happy medium in my life. Some days I feel like I am functioning while other days I feel like I am living again.

Grief and addiction can morph into a more positive being. But just like any recovered addict would still call themselves an "addict for life", I will always be grieving for life.

It's a tug of war process with grief and like an addiction it is extremely personal and hard to understand for others around me. I never have been an addict of anything but dealing with my grief has given me a better perspective and understanding of hardships and struggles that others deal with too. Having this parallel comparison has allowed me to forgive myself more for not always feeling comfortable to "move on" and forgiving others for their struggles as well.

My grief has definitely made me a more kind and gentler person and made my work with families dealing with hardship much personal and understandable. One of my goals with this blog and with my grief in general is to always be open to talk about infant loss and the struggles of loosing a child. I have never had a problem openly admitting that some days still aren't good for me and that when you ask me "how are you doing?" I can be honest that the answer may not always be "good".

Wednesday, August 20, 2014

God will Provide

It's been very hard to imagine what good could come after Max's death.  Even harder, was what I would even accept as "good" after Max passed away. I didn't ever feel entitled to "good" things happening after Max's death but I was hoping to catch a bit of a break. 

I have been working at a temporary position since May at Lifetime Fitness in Chanhassen with the intention of leaving at the end of August to stay home for the 6 weeks or so before Max arrived. Well obviously things were not going to work out that way but I still had the looming end of a temporary position hanging over my head. I prayed and hoped that God would provide some sort of a direction for me since Max's passing. 

Well, last week I ate lunch with a good friend and former co-worker who passed on information about a position in Chaska that would be working with the Help Me Grow Program of MN. It was 20 hours a week, a good bump in pay, I couldn't pass up applying for it! I applied and was immediately called for an interview last Friday. To my astonishment and surprise I was offered the position yesterday and accepted!!

It still hasn't really sunk in yet and I still slightly feel unwilling to accept that this type of opportunity would fall in my lap after stressing for the last 2+ months of what lay ahead. 

What I have come to realize though is that God has provided for me these last few months when I felt so stuck. He has provided me with so much support over the last few months to be with my boys (I am only working part-time at Lifetime since Max was born), begin my blogging, and build my faith and trust in Him. I have never felt more connected or strong about my faith until I was faced with the loss of Max and the aftermath. I have often become frustrated, emotional, and depressed over what purposes God had for me but I hadn't lost my faith or trust that eventually some direction and opportunity would come my way. 

This new opportunity has resurrected my understanding of where my passion in my career lies, the need for a good work/life balance, and that my little Max is lifting me up every time I haven't felt able to take another step. Before my interview last week I sat in my car and said a prayer to Max to be with me. Each day for the next few days I saw a butterfly, one that even hung around the outside of our home for hours on Saturday. I feel lucky to know that God will provide for me and my Max is always holding my hand and guiding me through.

So without further adieu, I am so excited to announce that next Wednesday I will begin a new job at the East Creek Family Center in Chaska as the Bilingual Interagency Resource Specialist. I will be working with the Help Me Grow Program of MN by providing central intake for referrals for 3 different western Carver County school districts as well as act as a resource liaison for families that are facing other barriers. I will also provide outreach and all intake services for Latino families in the area. I am so excited to work with families again and continue to use my multi-cultural back ground and bilingual skills daily.

Thank you to everyone who has said a prayer for us, and helped us keep our hopes alive that good things can come again and God would provide....He most definitely has!

Wednesday, August 6, 2014

Max's Story Part 3: Lot's of people make babies; We made an angel

I have always believed that birth stories are extremely important. They are not a medical procedure or process. Birth is a journey and a transformation. Mom and baby go into birth as one and end as two (or more!). The process of becoming a mother for the 1st, 2nd, or 20th time is such a gift. I still held this belief when I went to give birth to Max. Our transformation would include a sad and different ending than most but it still changed me for the better. I still experienced a transformation of myself and the world I lived in. For me,  I was no longer so naive to the evils on this Earth nor did I take the beauty of it for granted anymore either. I got to experience the gift of holding an angel and seeing God's work first hand.

Our induction with Max was scheduled for June 4th, 2014 at 4pm. Yes, 4pm. Which gave me an entire day to sit and evaluate life before walking into a hospital to say good-bye to my sweet little boy.

The night before the induction I had to pack a hospital bag. I had packed a hospital bag for Labor & Delivery two times before but I couldn't even begin to figure out what to put in it for Max. I packed a few changes of clothes, my Bible, and some toiletries. That was it. No going home outfit, no receiving blanks, no boppy pillow, or nursing bras this time.

 The morning of the 4th, I woke up, sat down at our kitchen table and began to write down some "silver linings" that I had seen throughout my experience up until that point. Tears poured down my face and onto my notebook pages but I kept writing. I was amazed that I came up with 50! 50 silver linings in this horrible experience?! Showing gratitude and thankfulness for being able to have the time I did with my Max was very helpful for my grieving process. I decided to take it with me to the hospital in hopes I could come up with more (and indeed I did!!).

Around lunch time I received a very timely and comforting call from my regular OB. He was the same one who delivered Parker and had provided me with all my prenatal care with Max as well. He was apologetic, reassuring, and I was so grateful to have heard from him.

We headed over to Abbott in the later afternoon. Andrew and I parked in the ramp and I sat hugging him for a few minutes while we both cried. Finally, we had enough courage to get out and go walk-in to the Mother Baby Center. My doula, Katie had already arrived and greeted us at the entrance. Having her there from the very beginning was such a blessing for our experience. We were brought to our room where I immediately noticed that our nurse had written Max's name up on the patient whiteboard. She really cared. She always called Max by his name, as did all the other staff there--definitely a silver lining. She was a wonderful nurse and the perfect, calm, and patient person who I needed to begin our care.

The induction began very slowing and by late evening my mother, Claudia arrived and around 9pm our Pastor, Rob. We cried, we prayed, we even laughed a bit that evening and I even got a decent amount of sleep that night. I was still feeling Max move a lot and was just doing my best to soak in every movement and moment with him.

The morning of June 5th continued from the night before. Again, another wonderful few nurses, a supportive husband, doula, mom, and Pastor. One staff member that came to meet us was a nurse who practiced a lot of natural, homepathic care. She came in with a bright smile on her face and the first thing out of her mouth was, "Please tell me all about Max!" I broke down sobbing again, explaining that someone asking me to talk about my son, who had not even arrived yet was so touching. She put some lavender essential oils throughout our room and gave me a little "massage". I will never forget her amazing compassion and care.

 In the afternoon I elected to get  an epidural after talking with the OB. The reason being that babies born far from full term can cause after birth complications for moms. There was a decent chance that Max's placenta would not deliver and I might need to go to the OR. If it became an emergency and I did not have an epidural I would need general anesthesia. I decided to just go with the epidural. However, I made it clear to everyone in the room and especially the anesthesiologist that I was not in any pain and had done this all naturally before. I had a hard time giving into the epidural because of my amazing natural waterbirth with Parker. I truly enjoy labor but knew Max's situation was different.

I was able to relax more and later that evening the OB told me I would probably deliver later that night. I was soooo nervous. I remember just shaking at the idea of actually delivering Max and that after 24 hours I still wasn't "ready". Andrew and everyone assured me that when Max came, I would be ready.

Everyone ended up finally falling asleep around 11pm that night. Around 2am I awoke with intense pressure. I hit my nurses button and hollered for Andrew. I told him I felt like I had to push. He got my mom, doula, and pastor (he waited outside the room.) The nurse came in and checked me. Max was there. She told me not to push while she called the doctor. The doctor came in and agreed that Max was ready to be delivered.

We decided to leave the lights low, didn't break down the bed, and the OB sat right on the side of the bed. At this point I had been in labor for 32 hours. The moment I began pushing I felt a rush of peace--I desperately needed it. I was finally ready...I was excited to meet my son, Max. A few easy pushes and Max was born. It was very quiet. No crying baby, no hustle and bustle of nurses or doctors. Andrew cut Max's cord, the nurse wrapped him in a blanket, put his hat on and brought him right over to me.

As we expected, Max was stillborn, we don't know when he passed away but there were two things I was very sure of before he was born: 1) I did not want to pick his birthday, and 2) I didn't want to know when he would pass away. Max was born at 2:08am on 6/6/2014. The number 8 being my favorite number and 6 being Andrew's made us both smile. Andrew held Max, my mom, and our Pastor, Rob came right in after delivery to baptize him. While this was all going on our doula captured over 275 pictures.--Another silver lining.

After I held Max for a while the nurses asked if we wanted to take his measurements and get his weight. Max was 1lb. 1oz. and 10 1/2 inches long. He was absolutely perfect. He looked almost exactly like Jack did and had Parker's distinct thin upper lip. For the next few hours I held him, kissed him, and studied every little detail of him. Andrew, Max and I took a nap together for a few hours after everyone left. Max slept with me right on my chest just like our other babies had as well. It was blissful to have those few hours together as a family. I remember talking to Max and just sitting in awe of this beautiful baby. Even though Max had passed away I still felt a very strong presence of him with me and still do everyday.  I was frustrated that there was nothing I could do but felt so comforted to have some time with him. After 10 hours, we decided we were ready to leave and were discharged from the hospital. Max left with he nurse when we left. We all left as a family, just not all together.


22 weeks, 1 day, and 10 hours is all the time I got here with Max on Earth....One day and for the rest of eternity that will be different.







Sunday, August 3, 2014

Message from Andrew, a father of loss

A Father’s Agony
Being a father is THE greatest job ever.  I knew there would be ups and there would be downs, but I never fathomed anything to degree I have had to go through.  There is no class to take, advice from anybody, or a book or blog I could’ve read to prepare myself for the day Max was born.  Like my other boys, Max was first held by his daddy.  Max was able to be in my arms and feel the protection I was able to give, to feel the love I have been waiting to provide, to see that my world revolved around my family!  On the day Max was born, I have never felt so helpless.  Being a father means that you will put your family first.  You will ensure the safety and security before your own.  You will do anything to take care of the family so they can have the perfect life.  I strive to make the lives of my family better than my own.  For once in my life, I was not able to make things better.  I was not equipped to rid the evil.  
Not only is being a father the greatest job, it is the most important job I have had and will ever have.  Being a father of boys means that I get to teach them how to be a man, how to play sports, how to treat a lady, how to show respect, understanding the value in hard work and show that it pays off, and how to show emotions…I didn’t get to do that with Max….and as a father…I have felt like I was cheated out of such an important part of my life.  Maxwell Gregory is my son…and although I won’t get to teach him life skills here on earth…I have found that he is teaching me.  He is teaching me patience, love, gratefulness, and the importance of having faith.  I look forward to the day that I get to hold my boy again so I can show him love, patience, gratefulness…and how to throw a ball!  I love you Max…you are always on daddy’s mind and in daddy’s heart!

Wednesday, July 30, 2014

Max's Story Part 2: D-day

The week between our first and 2nd ultrasound was fairly easy in retrospect. I was anxious and nervous until I finally got an appointment set but really tried to stay positive. We decided to still announce that we were having baby boy #3 and celebrate that Max was here with us that day. We were trying to be very open with some close friends and family that something may not be right. I even remember saying how honored I would be if God chose me to be a mom of a child with special needs. The idea of a disease that was incompatible with life was on my radar but I quickly dismissed it that Max's condition couldn't be that severe. I told my co-workers on the 29th that I had my ultrasound tomorrow morning but would be back hopefully by 11:30 am.

The night of the 29th Andrew and I sat watching some TV after our boys went to bed. Max was moving and kicking and I had Andrew come sit with me and feel all the life Max had. We talked about the ultrasound for the next day and I remember saying "See Andrew, he is so alive, there can't be anything wrong. My mom intuition says we're just fine".

The next morning we arrived promptly at 8:30 am. The sonographer began her scan. It was very quick, she talked throughout and I had a feeling that everything was fine. She left and said the doctor would be in to talk to us soon. Dr. Thorson was the perinatologist who came to speak with us about 15 minutes later.

That's when our world ended as we knew it....

Dr. Thorson asked us what was the reasoning behind us coming here? Andrew and I explained we were told our baby's femur and humorous was possibly "short and bowed". She nodded and began to explain that Max's long bones (Femur, humorous, rib-cage) were are measuring at about 14 weeks gestation (I was 21 +1) and that she was extremely concerned. She went onto explain that Max's skull was indeed irregular shaped and measuring 23 weeks. His vertebrae were irregular shaped, his hands we flat and his fingers much more short and stubby than normal. She said all of this didn't necessarily mean "fatal" but there was one last big issue. His chest cavity was extreme small (measuring 14 weeks), and was not allowing his lungs to develop. When he was born at full term he would not have the lungs developed enough to breathe or receive any breathing assistance. He was only surviving on the inside while I would breathe for him. As soon as he was born he was going to die.

 Max's diagnosis was fatal.

We were officially diagnosed with a rare skeletal disorder called Thanatophoric Dysplasia. It was caused by a simple fluke in the system. So simple in fact it was just 2 amino acids that swapped places and told Max's bones to stop growing.

 The chances of having a child with this disorder is something close to 1/50,000 and ours was not hereditary, just a mistake in the system.

Seriously, what the hell?

All I remember doing is breaking down and crying my eyes out, Dr. Thorson tried to be as comforting as possible and had the genetics counselor come and meet with us.

We were told that we had a few options, but none involved anything that could save our son. Those options were to deliver now or later. There was no rush and the staff encouraged us to take our time with the decision. Should we choose to carry full term however we would need to elect a c-section due to the irregular growth and shape of Max's skull that would not allow him to pass through naturally and that he would be immediately put into neonatal hospice care if he survived delivery. There is often other complications that arise in TD pregnancies that did pose some risk for mom as well.

We decided to not make any choices that day.

We left the perinatal clinic in shock and confusion. A part of me couldn't stop crying and screaming while another part of me didn't even know what just happened. It felt like a nightmare, except it was real--too real. I just wanted to go to sleep and wake up again hoping it was all a dream.

We went home and immediately called our family and some friends and went to visit our church's Pastor.

The next few days were met with a lot of stress, panic attacks, and haze. I do however, vividly remember waking up in the middle of the night the day after Max's diagnosis. I was laying in bed with my eyes wide open thinking to myself, "something is wrong". I was so groggy though I really could not figure out what was wrong. Then it hit me again like a freight train. This sweet little baby who was moving and kicking was not going to come home with me.

 I went through a lot of limbo with reality. Some days I could not even tell you what was real and what was not anymore. Our church, family, and friends really stepped up for us. Our pastor guided through our decision making process, our friends brought us meals and took our boys to the park while Andrew and I sat and discussed what we wanted to do. Andrew's mom came down on Sunday, June 1st to help us with the boys. My mom came up on Monday, the 2nd to help me cope.

Andrew and I had to make the hardest decision ever.

We decided to go to get a second opinion on Tuesday June 3rd. If the second opinion came back as fatal we were going to induce the pregnancy. There was ALOT of information gathering and understanding that went into this process. A few things we had to understand about carrying Max to term was that if we elected a c-section there was no guarantee I would be able to hold him right away. Considering that he may only have minutes after surviving delivery I did not want to meet him in a cold OR. We also had to make the decision to basically "not resuscitate". Because Max would be born without properly developed lungs there were no breathing machines that could make him more comfortable. Bottom line, if he was born alive he would suffocate to death and nobody could/would help him. (Please understand, there was a lot that went into our decision, these were some of the big issues but really only the tip of the iceberg for us. I can only speak for what was the right decision for our family.)

I just couldn't do it. As a mom I knew watching my baby fight to breathe would be too much. I knew in that moment I would scream for people to help him, and I didn't want my baby to see me like that.

I felt helpless; we felt helpless. There were no options, there was no way out of this mess.

I struggled to understand what could I ever do for Max. How could I make sure he knew I loved him so much and that when he died I wouldn't love him any less? For me, it was the opportunity to labor with him, give birth to him, name him, hold him, kiss him, and love him for just a short amount of time here on Earth. We decided that my mom, our pastor, our doula, Katie and of course Andrew would all be there for delivery. (More on their amazing impact later).

On June 3rd, the perinatal  group at Abbott gave us the same fatal diagnosis so we decided to schedule induction for June 4th.

Andrew and I left Abbott that day and went to Mesa pizza for lunch where we met. We knew this would be the last day Max would be home with us so we tried to make it special. That night we made sure his brothers gave him lots of love and enjoyed laughter and playing with our other 2 sons. Jack came over to me after Parker was put down and asked, "Mommy, can I fall asleep in your arms?" Jack fell asleep with his hand right on my belly. I had never been so at peace. Andrew and I stayed up feeling Max move and kick and told him how much we loved him. That day was filled with laughter, lots of tears, and lots of prayer.


Wednesday, July 2, 2014

Max's Story Part 1: The Ultrasound

Max was (a bit of) a surprise baby #3. We found out we were expecting a third baby at the end of January 2014. I was surprised yet not really that surprised. I started to feel funny about 1 week before finding out and after getting nauseous while eating lunch one day, tested that afternoon. Andrew came home that night and I had made a card that said: Congrats!!-Love, Baby Scott #3. Andrew was beaming with excitement. I remember sinking into reality with him that night that we would have 3 children under 5. We needed to finish our basement asap for extra space, I would be staying home again this fall, so many things to do in a short 9 months. I was filled with love and a bit of intimidation as I thought about how I would be able to handle it all. I quickly began to settle into the pregnancy and knew this (bit of a) surprise baby was meant to be and everything would work out just fine.

I had a relatively normal (for me) 1st trimester that included vomiting all day everyday and extreme exhaustion. I would easily be in bed at 8:30 pm, up by 7 am and ready for a nap again at 10:30 am. When we first told Jack mommy was having another baby he exclaimed that we were having 2 girls. I was slightly concerned he would be right with the way I was feeling. I went to my initial prenatal appointment at 11 weeks, heard (and saw!) 1 baby and remember looking at the ultrasound and thinking immediately it was another boy. My eyes welled up with tears as my excitement for another squishy baby was becoming more real.

 Fast forward some more, I left my position at the CAP agency and took a temporary but better paying position at Lifetime. I was really torn about my decision but felt that the opportunity to make some better money before the baby arrived was important. I settled into my new position, really liked the team and was excited that my position would be ending at the end of August, giving me at least 6 weeks at home with my boys before Max's arrival. Life continued as normal. I had my 16 week check up, recorded Max's strong heartbeat on my phone and set the date for my 20 week anatomy scan, May 23rd, 2014.

The days approaching May 23rd were met with a lot of name and gender debate between Andrew and I. We wanted to have a name picked out for either gender before we were told what the baby was. Andrew thought girl, I thought boy. We easily had a girl name chosen but struggled with our 3rd boy name. One day it suddenly came to me, "Max" or Maxwell just in case he wanted to sound mature and professional at some point. Also, I believed it was the perfect littlest brother name. When I asked Andrew we both agreed it was indeed perfect.

The morning of May 23rd, 2014 started like any day. My ultrasound wasn't until 2:30 pm so I went to work and left with Andrew for an early lunch and a swing through Buy Buy Baby before our ultrasound. Things went downhill from there. We were called about 30 minutes prior to our appointment and told that our OB was taken into an emergency situation at the hospital and we needed to reschedule our ultrasound. After some phone calls back and forth we had an appointment that day instead with the sonographer at 4:30pm. We went into the ultrasound and the sonographer started to ask me over and over about our due date and if we were positive we were 20 weeks along. Being a 3rd time mom, I knew something was up. I also noticed that Max's arm's and leg's looked so chubby, like extra folds of skin. I also noticed that one side of his head jutted out a bit and looked irregular shaped. The sonographer became more and more concerned about things as time went on. She only mentioned however that the baby's femurs and humorus looked "short and bowed". Finally after over an hour we were told it was another boy. I tried to be happy and even remember laughing a bit but I was still SO worried something wasn't right. She asked us to stay and speak with the on call OB about her findings but by 6:30 pm no one had been able to come over and we were mentally and physically exhausted. We elected to leave and have our OB call us instead.

I remember getting in the car and breaking down into tears, knowing something wasn't right. Andrew calmed me down and after talking with my doula, Katie and our family, we felt that we still needed to be positive. Even my OB called me that evening to reassure me that this could really be "nothing".

In my mind, Max was moving, his heart-rate was strong and if it was life-threatening we would have surely been sent to Labor and Delivery. I kept looking at my ultrasound pictures with so much love and hope that our 3rd little boy would be okay. We were urged to make an appointment with a perinatal group to follow up on the findings and make sure everything was okay. Our level 2 ultrasound was scheduled for May 30, 2014.