2020…our year of loss

Trigger warnings: COVID, Death, Pregnancy, Loss, Miscarriage

2020, what an effing year it was! I think everyone can agree with that. It felt like a year that would take and take and only give you the crappy things. I have said this for months now, I hope we never forget how creative we have gotten and take these little lessons along with us as we continue on this journey of life. Though this blog wouldn’t be complete without mentioning those who aren’t continuing on this journey with us. COVID-19 has taken so much from us, our feeling of safety, our social lives as we used to know it, countless canceled plans, and for some of us, family.

In October, COVID made its way into my grandparents’ assisted living. On Thursday we found out my grandpa had tested positive, and by Sunday afternoon he was gone. My grandma also had tested positive but thankfully had very mild symptoms. Their assisted living lost 6 people to COVID that we know of- though no one seemed to talk about that. COVID funerals are the worst by the way. No one can attend, you have to wait weeks to quarantine the dead. I thought ok, 2020 this is the icing on the cake of all the crap that happened this year.

Gramps, always trying to make you laugh!

Right before Thanksgiving I found out I was pregnant and we were ecstatic! After a few concerns my OBGYN ordered an ultrasound and everything was looking good. A follow-up was scheduled for two weeks later, the week before Christmas.

Have you ever gotten the feeling that something was wrong even though no one has said so? The tech doing the ultrasound told me she had to get the radiologist because it was a follow up. This seemed strange, two weeks prior they sent my doctor the results and they called me later that day. When they returned after what felt like forever, they looked at the images talked about my crazy uterus (it’s hereditary). Then I heard the worst sentence of my life, “There is a little baby in there but unfortunately no longer has a heartbeat.” I didn’t want this to be true. I don’t want to be part of this club, I just want to have all these weird pregnancy symptoms and keep dreaming about what life will be like a year from now.

I’ve never felt more alone. Our family and friends have been wonderful support for us to lean on. But I just want to talk to people who understand what we are going through. But it’s like a big hush hush. I mean think about it, you normally don’t tell people you’re pregnant until your second trimester. Why? Because the risk of miscarriage significantly decreases. It all seems so silly now, because even though we are heartbroken I want to talk about it. This baby will always be part of our story. I searched for resources of women who like me have experienced pregnancy loss. I wanted to know how things went for them. News flash it doesn’t happen like in the movies!

I read a blog said it the best “We need to start the conversation about miscarriage. We need to break the silence. We need to bring it out of the dark and into the light. We need to stand together as parents, as women, as mothers, we need to lift one another up and celebrate life – no matter what stage it is at.”

I hope you do not find yourself as part of the club you didn’t want to be in, but if you do, know that I am here. While I am not quite ready at this moment, I am here with you and will support you in whatever way I can.

Oof, 2020 broke me in more ways than one, but I look forward to the day when I can look back and see how strong we were and how far we’ve come. I wish for 2021 to bring peace.

Good riddance 2020!

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Challenge Accepted!

When my sister Elisabeth turned 28, she embarked on a journey, along with her friend to each accomplish @28EpicThings.  Their adventures took them all over the globe, pushed them to try new adventures and most of all have fun. In preparation for this birthday, Elisabeth asked me if I was going to accept the same challenge. I don’t have a birthday buddy as those two are, but I am always up for a challenge! I’ve spent the last two years in graduate school. Having recently graduated with my a Master of Science in Nutrition Education my free time has increased immensely and I get bored easily.  That leads us right here.

First, let’s get acquainted as we will be spending the next year together. I’ve always been up for an adventure and wanted to march to the beat of my own drum. I believe that balance is the key to life- that’s why I can be a Registered Dietitian and love donuts, with sprinkles.

Sprinkles were banned in my house growing up- all thanks to my mother. She has always said they make her skin crawl. If we paid for our donuts in coins and picked out a sprinkled one she would make us stand outside and eat them. So now I’m 28 and I still pick out sprinkled donuts for my mom.

Yesterday started the beginning of this awesome year of adventure. It included an awesome cake with actual donuts and SPRINKLES. I’m not sure who convinced my mom to let them in her house, but THANK YOU mom!!!!IMG_0013

My first adventure was figuring out how to create a blog. As usual, I did my research, and figured it out. My goal is 28 things I’ve never done before. Maybe it will be more, maybe I’ll fall short. But nevertheless, I know it will be filled with fun, family, and a sprinkled donut!IMG_0012

 

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October: Pregnancy & Infant Loss Awareness Month

There’s only one week left of October. I’ve never experienced Pregnancy and Infant Loss month before but being connected to so many now it’s definitely a heavy month but so many great things are shared and I feel compelled to share mine. The best quote I’ve read this month is that “I grieve publicly so others know they’re not alone.” That’s exactly how I felt and in sharing if I help even one other person then it’s worth it.

“I believe in rainbows.” The shirt that took 2 plus months to arrive and @jriedler forgot he even ordered it for me. That was a funny moment. It’s mind over matter when you tell yourself it will all be worth it. That’s what I told myself for every minute of my recent pelvic MRI and the oh so uncomfortable hysterosonogram three days before that. And the countless hours on the phone with doctors offices for scheduling, questions and insurance calls.

Since June 2018 I had thought that I inherited a bicornuate uterus, or ❤️ shaped. I remember laughing in the ultrasound while pregnant with Graham and calling my mom once I got out.

At my annual physical this summer my GP suggested I maybe have an ultrasound just to be sure because once you’re pregnant they can’t see the natural shape. If nothing else it gives everyone a good starting point. The results suggested that I should go see a specialist, and my GP would send a referral when I wanted.

I decided I would see my OBGYN in two months and see what he thinks. Then a voice said make the call. Today. Of course there was a 2.5 month wait. When they called three hours before an open appointment time 2 months early I took it.

Of course the images weren’t definitive enough – could be ❤️ shaped or could be a septum. Septum’s are not a good thing. They have poor blood supply if a fetus attaches and a higher likelihood of miscarriage. Heart shaped uterus means there’s nothing to do.

Of course I have a septum and now require surgery. My head goes to the calendar. It feels like we’ve wasted an entire year of our lives.

There’s no telling what the road will look like. Maybe my rainbow has a different outcome. I had two people recently ask me if I was pregnant yet or if I remembered how to have a kid. It caught me off guard as it usually does. I’m still confused as to why people think it’s their business to ask such things. I don’t always have the wherewithal to talk about everything I’ve gone through to every curious person.

I pray every night that one day our 🌈 will be clear, whatever it may be.

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Hazel’s Due Date

I thought I’d have something really profound to say today. I’ve had 6 months to think about today- Hazel’s due date. Which probably would’ve been earlier than today (Graham was almost 3 weeks early) but it’s the day every parent dreams of. The finish line of the race.

I should be in pain from your 10cm exit wound in my abdomen but instead the pain resides in my chest where my love for you grew from the second I saw that second line and then went and dumped that Spotted Cow in the drain after I decided to check a couple days early and was shocked it was positive.

I read something recently that said what if we said all the things at funerals at birthday parties? Don’t leave anything unsaid. I’m sorry we didn’t get to celebrate you while you were here. That society has shoved pregnant women in a “box” just in case you lose a pregnancy before it’s “safe.” That you might lose a pregnancy so you shouldn’t tell people. That’s utter BS. The reality is there’s really no safe zone. I’ve read more than my fair share about that. As someone who has experienced this you need everyone in your corner supporting you following pregnancy loss.

A handful of people knew about you but more people knew about you afterwards. I’ve spent the last 6 months trying to process everything. In reality it will probably take a lifetime. Hazel, thanks for dropping by me on Monday ❤️.

It hurts like hell.
Every. Single. Day.
From @Zoe Clark-Coates at sayinggoodbye.org

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Hazel 👼🏼

Father’s Day felt fitting to write this post. Our hearts grew bigger in November after finding out we were expecting. Despite losing having lost my grandpa to COVID just a month earlier. A child sent our way from my Grandpa. Today our hearts are still bigger but aching. Aching for the child that should be making an arrival in a month. You may not understand this post or even care. But I’m a talk my feelings out kind of person, perhaps that’s the extrovert in me.

I honestly thought we woud have another boy. It was something I predicted after I had Graham. Even after that child left us, I still believed it.

Until one night a few months ago. My grandpa was in my dream and he told me that he was now 97. He’s holding the hand of a little girl who is four. My grandpa was a few months shy of 92 when he died. Give or take the ages match up if time kept moving forward. I whole heartedly believe that he was holding our daughter’s hand. I get chills every time I think about it.

Lots of pregnancy loss resources suggest naming your child as a way to heal and move forward. How does one name a child you don’t know, met only briefly at the very end and was far too young to have a determined sex? I always thought well maybe down the line we would pick a name that we never ended up using.

Honestly the dream changed my feelings about this. For a child that has made such great impact on procedures for other loss parents, she deserves a name to be remembered by, even if only by us. I remember walking around the neighborhood in early December looking at Christmas lights with Graham discussing baby names. Hazel was a name we both liked. We added to our “list.” We decided we liked this name for her. Jeremiah has hazel eyes, maybe she did too. A wand of hazel symbolized protection and authority. She’s forever protecting us.

We recently visited the grave where Hazel’s momento is buried with other babies from the hospital. She may not physically be there but she’s defintely there. Forever in the Garden of Angels.

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One Tiny Angel Making Change

I don’t ever expect anyone to understand what I have gone through but want to make certain these never happen again.

Trying to make change happen in this way is exhausting. Mentally and emotionally draining. Every person wants to know what happens and you tell them. You relive the trauma. You’re thrown into it again and have to unbury yourself from feeling trapped. Some days I go to bed early because I am just exhausted from it all.

Change is happening at our hospital and it’s because of our baby and what we went through and having the courage to speak up. Some of the comments from the various hospital staff have spoken to me have been:

“We have to take these traumatic events and turn them in to teachable moments, so they never happen again.”

“Thank you for advocating for yourself.”

“Your baby is making sure no one ever goes through this experience again.”

We recently dropped off a momento of our baby to be included in a memorial service to occur next week with other babies gone too soon. I cried when I was offered this opportunity. While my child won’t physically be with those other babies it was the first time I felt seen and heard. The fact that the hospital does this for their families shows their compassion to all.

If we keep talking about miscarriage and loss then we can continue to lessen the stigma surrounding it. Every conversation surrounding miscarriage gets us that much closer.

We will continue forward to try and make the world a better place. On to our next attempt at making a change for those who suffer and mourn the loss of their babies.

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Things to not ask a woman!

I’ll be honest I wrote this blog post after a pretty awful day but wanted to let it sit and stew for awhile.

I think the day after we got married someone jokingly asked us “so when are you going to have kids?” It’s been less than 24 hours and you are already wondering!!! Granted I feel this was sort of said in a joking manner, but why are people so wrapped up in when people have or do not have kids.

After I had Graham people started asking about another one. Maybe there’s some super human ladies out there ready to pop another kid out after just having one but that certainly wasn’t me! Having a c-section was not fun and the recovery sucked! Wasn’t quite ready for that as I still had staples in my abdomen! You’re welcome for me not posting that photo 🤣.

So once I returned after my week off from my medically managed missed miscarriage (and certainly still very emotional) I worried what/how I would react if someone asked me about adding another one.

Well it took a whole day before someone told I should just go get pregnant, another person to tell me now is not really a good time to have kids. I was polite but inside it was killing me. Killing me because I wish I had the courage to say that were did have a child but he/she would never walk this earth.

Thank goodness for social media helping connect me to other mamas with a similar story. I’ve seen their strength and it has given me strength. It also helps having a child who seems to give you just what you need when you need it most. Like randomly singing twinkle, twinkle.

Recently I had an employee ask me if I was ready for another child. It was just over a month since my medically managed missed miscarriage and almost 9 weeks since we found out our devastating news. But I had the courage to speak up and tell her that I had suffered a loss of the holidays (albeit not entirely true it was easier than going into details).

In my opinion, if you feel the need to ask about someone’s reproduction you deserve whatever answer you’re given and it may even catch you off guard. I personally know people who choose to not have children, couldn’t get pregnant, adopted, experienced loss after loss, have done IVF and IUI.

Do you really want to be the person who tears someone’s heart into a million pieces?

No, I do not think it’s anyone’s business besides the individual and their partner if, when, or how someone may OR may not reproduce. And if you feel the need to come up with some small talk- ask her where she gets her hair cut or something! Literally ask ANYTHING besides that because it’s just none of your d@mn business!

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Our ONE Happy Camper

Holy smokes! It’s been 1 year, 365 days since I became a mom! It’s kind of amazing if you think about it. One second you’re just a pregnant person getting sliced open and the next you’re a mom.

Of all of my credentials, and I have a few, the title of mom is my favorite. To ask me a year ago when I saw Graham, held up above the drape that blocked my insides from view, for the first time where this past year would look like would have been challenging to answer. Being a mom is the best, hardest, fun, tiring, difficult, rewarding, exciting thing ever. Every day is a new adventure.

I know my parents always said time goes so fast, you’ll understand some day. The saying does go something similar to that the nights are long but the days are short. Well I’m sure I don’t understand fully but I’ve learned that time can stand still and speed up at what feels like the same time. It’s a feeling that’s difficult to describe but one I’m sure others understand too. You want to know how your child will be but what them to stay little forever.

From lip ties, cranial helmets, shots, hand, foot and mouth disease, pink eye and colds you’ve had a rough year. We’ve had loss and sadness and yet Graham brought smiles to the faces of many just when we needed it most.

Graham, you have the greatest smile, the silliest laugh, the strangest noises that make you who you are. You are a friend that tries to comfort the sad friends by head hugging. You never cease to amaze me with what you’ll do next. Though I will never understand your love of eating socks, even if they are on our feet.

May you start each day with your infectious smile and laugh. May you be kind to others and a friend to those who need them most. May you continue to let us make mistakes as we continue to navigate parenthood.

Here’s to turning 1 Munch and being such a happy camper! I love you 🥰!

Navigating Plagiocephaly

I don’t think I’m alone in my thinking that sometimes insurance companies can be difficult to deal with. Sort of like cable/internet companies. We’ve all dealt with the internet company games, haven’t we? I’ve had my fair share of those long conversations just to save $10/month or something ridiculous. This sort of feels like the same thing- only worse!

At our son’s 4 month appointment his doctor suggested we go see someone about his head as he appeared to have a “misshaped head.” It wasn’t the best thing to hear because we have been working on tummy time everyday from about 10 days old. We have my sister to thank for that but sometimes things happen. I’m still convinced it was due to his wedged spot in my rib cage for 1/2 my pregnancy.

We had trouble getting in to the technician and were under the wire because our insurance company would be changin July 1st and our deductible and out of pocket maximum would be significantly increasing.  After a few back and forths with changing appointments I grew frustrated and decided to make an appointment to see a speicalist a the Children’s Hospital. After an evaluation and some x-rays to rule out premature closing of the plates of the skull we were sent back to the original technician in town to order the helmet.

We experienced the literal runaround with the insurance company which was exhausting, frustrating and heartbreaking at times. July 1st we changed insurance companies and we were literally 3 weeks before this point when we made that first appoitnemnt. They are unable to bill the insurance until the helmet is delivered, add on the time before this for the pre-authorization which our old insurance company told me would be ok’d as it was included. But we couldn’t chance it and have it delivered July 2nd and insurance company 2 deny it becuase it wasn’t pre-authorized. So I called our soon to be insurance company and they told me they couldn’t tell me the cost of the helmet it is something covered in the plan. Phew, a sigh of relief. So fast forward to July 1, I call the insurance company to find out what we need to do to start this process and to make sure the provider was in the network. The woman informed me no, it was excluded from our plan. After I kind of lost it, I took the information down and decided I’d try to call back again later. Answer number 3 of whether or not this was covered came later that day when I was told there were exclusions but could be covered if certain criteria were met- one of which was physical therapy.

His PA at Children’s ordered PT after my request- and hoping this would help with the insurance company. After finding out that no it would not be covered I asked the PA to challenge the decision. Much to my surprise, as I was thinking it would never get reversed, I received a call saying they reversed the decision!!!! I cannot convey the headaches and stomachaches this caused us.

I think I spent over 7 hours on the phone about this one issue in 2.5 weeks! I will say that some higher up from the insurance company did call me to tell me about the reversed decision and to appologize for all of the issues we had and things they were doing to correct it so others do not have to go through what we did.

You want to do the right thing as a parent for your child and how can you put a price tag on something he needs? I knew we would get the helmet either way because I didn’t want him growing up and asking why we didn’t fix it or something to that effect.

The moral of my story is to not give up hope. Next time we might not be so lucky. I don’t know why they changed their mind- maybe enough people heard about this situation becuase I went to my employer’s HR department looking for someone else to contact, 7-10 phone calls to the insurance and many other people. At one point I had three different people “working on finding answers” for me! If you’re going through the same thing, hang in there! Just in case you aren’t able to get the insurance company to pay for it, there are grants available- check out United Healthcare Children’s Foundation!

 

I’ve had quite a few people mention to me that they used to let babies sleepy on their stomachs and then they didn’t have to worry about flat head issues and how it seems many babies nowadays needs a helmet. I found this from the American Academy of Pediatrics Clinical Report and found it helpful.

The incidence of positional skull deformity has been estimated to be as low as 1 in 300 live births to as high as 48% of typical healthy infants younger than 1 year, depending on the sensitivity of the criteria used to make the diagnosis.14 Since the American Academy of Pediatrics Task Force on Infant Positioning and Sudden Infant Death Syndrome (SIDS) in 1992 recommended that healthy infants be positioned supine for sleeping, the incidence of SIDS has decreased from 1.2 per 1000 live births in 1992 to 0.56 per 1000 live births in 2001.3,6,15 Coincident with this decrease in SIDS has been a drastic increase in positional skull deformity, estimated at approximately 13% in healthy singleton infants,14,15 which makes this a relatively common issue to be faced by the pediatrician caring for infants and their families.

You can find the entire report here: https://pediatrics.aappublications.org/content/128/6/1236.

 

 

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Birth. Life. Healing.

Just a few short days after my last post we welcomed our son to the world. He was only 2.5 weeks early and considering we were preparing for a much earlier delivery, I was happy. My water ended up breaking in the middle of the night which meant we had to head to the hospital, but not before we each took a shower! For some reason that felt important for me, not that it made a difference. But, it was two more days until I got another one so in retrospect that was a good thing.

I needed to have a c-section because the baby was breech. As we drove to the hospital and I walked into the Labor and Delivery department, I really wasn’t nervous about being hours away from getting sliced open and becoming a mom. But as the hours ticked away, I definitely grew more nervous and started to feel more contractions which really felt like cramps. We would have been waiting a LONG time if I didn’t have a c-section.

At 8:41 am, my husband announced to everyone in the operating room that it was a boy! I couldn’t believe it because despite feeling like we were having a boy for most of my pregnancy I started to feel towards the end it was a girl- mostly I think to just prepare myself for a girl just in case.

One of the things they asked me before the c-section was how I planned to feed my baby. I was looking forward to breastfeeding, besides all of the benefits it has, I knew that I’d be able to bond with my child as well. I knew that it would be hard work but having just finished growing a human, Bring. It. On. He struggled with breastfeeding because he had a lip tie, preventing him from getting a good latch. The lactation consultants said because his mouth was small that added to his troubles. But we kept trying. We went the pump and feed with breast and formula route. The formula was his supplement until my supply came in. At 1.5 weeks old he saw the pediatrician (thanks to the polar vortex and not being able to go outside) that he was then refereed to the ENT to have his lip tie snipped. 

He still was struggling and after 2 weeks of birth I still had little supply to give him. I can’t tell you how badly I wanted breastfeeding to work. I cried so many times because I couldn’t figure it out and he wasn’t gaining weight fast enough. So we had to literally feed him every 2 hours which was stressful as well. We would finally get him to sleep only to have to wake him up less than an hour later. After I was ready to claim defeat in the breastfeeding department I threw my pride to the side and made an appointment with the lactation consultants. They were a great help and provided me with nipple shields to help him. Long story short after a few weeks of trying to breastfeed him right away in the morning when the supply was high enough, I kept growing frustrated and he hated the entire thing. I decided that this just wasn’t in the cards for him and that some was better than none. So I continue to pump. I have the same supply that I left the hospital with, but I so wanted to be able to just have my body provide for him. Clearly it didn’t get the memo!!! Which is frustrating and really bothered me (some days it still does). I’ve decided that a lot of this “guilt” comes from my background.

As a Registered Dietitian I’ve learned all about breastfeeding and how it’s the best for the child, the benefits to the mother, etc. It’s been engrained in the brain and something we would tell patients as well. Once I got past this mental complex – which my boss actually pointed out to me on a visit with the little man to the office-that my body just couldn’t do it, it got better for me.  I had to tell myself that I wasn’t a failure or a bad mom because of it. But every time I pull out that bottle in public I feel like I’m getting the mommy glares. Yea lady…I’m talkng to you. Most recently at a baptism meeting where another mom had her bottle of breast milk out as I fed mine. The facilitator asked the other mom about feeding solids to her much older son than mine. The facilitator recognized the color of the breast milk then looks over to me and says “Formula?” and had that look on her face. Before you’re so quick to judge others, you should think twice. You just never know the struggles behind the person who is feeding that child. It wasn’t a choice I really could make, my body made it for me! But boy did I hope and pray that my body would change it’s mind- today would be the day, I just knew it. Well…today never came.

 And let me tell you about C-section recovery. It is no joke! Here we are 8 weeks later and I’m starting to feel more normal and not in pain but it was one heck of a recovery. Having a C-section doesn’t make you any less of a mom either. I can only imagine what the woman who had a 12+ hour labor feels like. I give her mad props because you had to endure that pain and anticipation for a long time! I am sure that mom would do the same for someone like me. Laying on a table in an ice cold room as I quickly lost all feeling in my body below my chest from the spinal block. Staring up at the ceiling and a blue curtain while I hold my husband’s hand and waited to hear my baby cry for the first time. Because at the end of the day we both did something incredible and miraculous! If nothing else, this blog post is part of my healing process. While I’ve mostly physically healed, other healing takes time.

Hopefully someone else will read this and feel that it’s ok. Ok to make the unpopular decision. Ok to give yourself time to figure this all out. Ok to change your mind and certainly ok to laugh at yourself for all the things you “surely wouldn’t do as a mother!” There are far too many stories, posts and photos out there that make you feel like you failed or should have done something differently. But you didn’t! At the end of the day none of that matters! Years from now my son won’t ask me why I did or didn’t do certain things, because he will be too busy being the perfectly happy little man that we raised. So give yourself time to heal and then start enjoying the little moments! 

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