Braeden's Birthday - Unpacking our experience a year later

Hi Friends - I started writing this post on Braeden's actual birthday, and to be honest have been distracted multiple times so I am finally here to finish it! 

Braeden turned ONE today, how fast this past year went! I didn't want to post a novel on FB, so why not a blog!?

I took the day off to spend at home with Braeden for a few reasons: 

1. He is SO MUCH FUN right now! Crawling everywhere, learning all the words and sign language, turns all the pages of his books.  

2. I honestly wasn't sure how my emotions might present themselves. 

If you haven't been along on our journey so far, here's the tea: I had a wonderful pregnancy. I felt amazing, all my ultrasounds were superb, made it to 39 weeks without so much as a blip. Then, on 4.13 during one of my non stress tests, Braeden's heart rate was giving us a run for our money. It would be in the 180's and all of a sudden dip to the low 100's for no reason. This was a red flag for my OB, and she sent me straight to the Hospital to be induced. I remember asking her what the issue could be but she wasn't sure. It could be any number of things, the most common being his umbilical cord wrapped around his neck. 

B made his appearance after 3.5 hours of pushing and a vacuum assisted delivery.

This is the moment everything changed. Braeden was not crying and due to the reaction of the approximately 15 medical professionals in the room with my numb legs still in stirrups we knew something was wrong. They didn't set him on my chest immediately like our nurse promised. Braeden was making some noises but it sounded like he was gasping for air.  They were whispering in hushed voices in the corner. The nurse that was with us during labor came back over and told us we could hold Braeden for about 30 seconds but they needed to take him right away for testing. I remember looking at him, saying "Hi Braeden!" and having him look back at me, hearing the sound of my voice. This was the tiniest ray of sunshine for me while we had to wait for answers. 

The most exciting day of our life turned into a nightmare. Josh and I spent an agonizing 4 hours alone in our delivery room waiting for news from the team is Braeden was going to be ok. At one point at 4:30 AM (2 hours after he was delivered) I asked a nurse if she could give me any information, would he live? She responded "I don't know". 

At around 6:00 AM, we spoke to a Pediatric Cardiologist from AmFam Childrens/UW who said Braeden would be ok, but he was born with a Congenital Heart Defect called Ebstein's Anomaly. It's a rare defect of the tricuspid valve - the valve between the right atrium and right ventricle chambers of the heart. because his valve doesn't close fully, deoxygenated blood flows back into the body which can be dangerous. Braeden's heart is enlarged and his atrium is significantly larger than his atrium. He would not need immediate surgery, but he would start seeing a pediatric cardiologist. 

I had a flood of thoughts after that conversation - first being what is a congenital heart defect? Did I do something wrong during my pregnancy? What do we do next? Why is this happening to us? 

I immediately started researching EA and surgeons. I found out that there are two amazing surgeons in the United States - Dr. Dearani at Mayo Clinic in Rochester, and Dr. De Silva at UPMC Childrens in Pittsburgh. I joined facebook groups, started asking about best resources. We were given a package from Conquering CHD, and it was comforting to know we had that information. 

Congenital Heart Disease is the most common birth defect. How could I not know anything about the most common birth defect? It's 60 times more prevalent than childhood cancer. We have a long road ahead of us, but we are here to help support our sweet little heart warrior through this lifelong journey. 

April 29th, 2021

 A year ago today, Braeden was in the NICU fighting for his life. 

I am processing my feelings considerably well today, but I'm not sure if I ever fully shared the full story of what happened to Braeden. The lowest points that Josh and I were trying to navigate while staying strong for our sweet baby boy.

Braeden was in the NICU for a total of 36 days. On day 14, April 28th, we were discussing taking Braeden home with his pediatric cardiologist and the NICU staff. He had gotten his PICC line out that day around 5:00 PM, and things were looking positive!

The morning of April 29th, at 2:30 AM, Josh got a phone call from the NICU. Braeden's oxygen saturations were really low, between 40% - 60%. He was on maximum wall oxygen but it wasn't improving his situation, so the staff switched to Nitric Oxide. As you can imagine - we weren't able to fall asleep again. We got another call at 4:45 AM letting us know that Braeden stopped breathing and they had to do chest compressions on him. Then another call an hour or so later letting us know that he had stopped breathing again, and had to do chest compressions a second time. The staff said it wasn't urgent for us to be there, and we felt helpless. The staff at that time decided to intubate him, so he was on a vent for a period of time. That was incredibly difficult to see. We took no pictures that day.

They started running tests: testing for viruses like RSV, blood tests to determine if there was a metabolic disorder. The virus screens all came back negative which was a relief. They did an ultrasound of his head and abdomen. We were at the hospital from about 6:00 AM - 5:00 PM on the 29th - they extubated him after he began showing some signs of improved breathing and saturations and I got to hold him for a few minutes. He was so sleepy and we decided to go home too - it was a super exhausting day with no answers as to what could be going on.

We get another call the morning of April 30th, about 2:30 AM. His oxygen levels were dipping low again and they intubated him for a second time within 24 hours. They ordered a number of metabolic tests, another stomach ultrasound, a head MRI and an hooked up to an EEG, as he began having seizures. The metabolic tests would take weeks for results. We were told some metabolic disorders aren't treatable. 

After the MRI, we found out that he had a blood clot that traveled through his heart to his brain. He had a stroke and suffered three brain bleeds. They needed to do more metabolic testing, and he needed a blood transfusion because of how much blood they took from him for testing, plus some he lost due to the still unexplained issues. At this point, Braeden was in critical condition. His ranges for everything were out of control. His sodium levels were dangerously low, blood sugar was over 400, his blood gasses were terribly imbalanced. 

He needed a blood transfusion badly; he also needed a central line placed in a main artery. One of 4 pediatric surgeons in Madison had to place the line, and at about 10:00 PM he was able to get the blood transfusion. 

We FINALLY had an answer of what was wrong after the abdominal ultrasound: He had something called NEC. Necrotizing enterocolitis. This usually presents in premature, formula fed babies. Braeden was not premature, and he was on breastmilk. NEC is scary as hell. Thankfully, they caught it early and even before diagnosis started him on 3 different antibiotics just in case. 

The 5 days from April 28th - May 3rd were truly the most terrifying time in our lives. We didn't know if Braeden would survive. Seeing him hooked up to all the machines, cords, tubes... seeing his tiny, bruised body from all the needles (including one IV that went into his head - newborn veins basically don't exist)... that time was an insane wave of emotions and basically being a zombie.

NICU PTSD is real. I didn't sleep well for months after that. The beeping monitors, the changes in his oxygen saturation, the NG feeding tubes, but man Braeden is a fighter. He showed us all he was not going anywhere and continues to be the brightest light in our day <3 

These two first pictures were taken after B had his EEG head sensors removed, and after he was extubated again. Third pic is him looking at us like what he just went through was nothin'. Our little spitfire!! 

Grateful, Thankful, Blessed

Happy Thanksgiving! 

I haven’t written in over a year and it feels strange and amazing, and also like no time has passed at all. 

I always feel so grateful and thankful for my family and friends and this year it’s increased tenfold. We would not have been able to get through this year without your love, support, calls, messages, prayers, food and visits. I hope you all know how much each and every one of you means to us 🧡 

I’m incredibly thankful and grateful for our son, Braeden. What a blessing he is in our lives! You’d never know he spent over a month in the NICU, initially admitted for his CHD Ebstein’s Anomoly. He had a longer stay because he developed NEC, seizures, a brain bleed, a stroke, needed a blood transfusion, stopped breathing twice. It was a LOT. How absolutely lucky we are that he’s the strongest little fighter, and the absolute happiest, goofiest baby! 

I’m thankful for my husband, especially during our time with B in the NICU. He was strong for me when I needed him, and I did the same when he needed me. His hair is amazing - the man bun is looking real good these days! He’s grounded and my voice of reason and sounding board. And so handsome to boot! 

I’m thankful for our dog Tully, she’s so gentle with Braeden. She’s taken a backseat since baby B has been home and while it’s inevitable, it does make me feel guilty. So we celebrate her as often as we can! 

Im thankful for the community we live in, and all our neighbors who’ve turned into friends. All the laughs, wine nights, events and fires (don’t worry, it’s just solo stove) 🔥 

I’m incredibly grateful to our care team while we were in the NICU. They celebrated all the little wins with us, shared hugs and support when we got hard news and overall just helped keep us sane. 

I had a chance to read a note from a friend today about being truly intentional in your daily life, and I have tried hard since earlier this year and will continue to be more intentional every day, share gratitude and pay forward all the love and support you’ve all shown to us this past year. 

Reflection

 Today is infant & pregnancy loss remembrance day. no matter what, I will always celebrate my tiny "what if" every day, especially today. 

It's different than last year; last year, everything was so fresh and I really didn't think I would be OK again. Finding out my baby didn't have a heartbeat at our first ultrasound was the hardest thing I've had to accept. It took away all my joy and hope. I finally got in touch with a therapist because I needed help processing the extraordinary empty, isolated feeling I had. 

I was so happy that Color Street came out with a set this year to honor infant & pregnancy loss, called Never Forgotten. Everyone grieves differently, but this set is so meaningful to so many, and I've been able to connect with so many more ladies about their stories. Wearing this set proudly today <3 To all the other parents who have experienced loss: I send you all the love, especially today. I see you. I feel you. 

Pictured: the book I received at my ultrasound and a copy of the form to release the remains of my baby to the hospital so pathology could test them. I chose to take the "pill" to pass the remains of my child as I was advised it was safer than a D&C (operation). I wish I would have done the D&C, because I was not prepared for the 24 hours I experienced following the pill. It induces labor, and I had contractions for 6 hours. It was the most traumatizing and painful day of my life. 

 

Reality Bites

Sometimes you just need a good 90's movie title to be the hero of the day, because I'm not coming up with anything clever today.

The last year has been a roller coaster of emotions. Like every day I wanted to wear a pin with this picture on it, because so. many. emotions. The excellent, the awful, the in-between emotions. All of the emotions. 

About a year ago, I went off my MS medication, Gilenya so we could start a family and give Tully a sibling <3 Gilenya is a medication used to treat MS, aka Fingolimod. This med stops the passing of certain white blood cells through the blood/brain barrier into the CNS (Central Nervous System) to prevent further de-mylentaion on the nerves. 

Gilenya was off the table for trying to conceive. Along with pretty much any DMD. Long story short, I had an MRI (baseline) in June 2019 to check on disease activity. It showed several new flares. Typically normal in folks stopping Gilenya, so not a huge concern. 

It also happens I got pregnant in June 2019!! I was so excited, our window to get pregnant and not have to worry about relapses was here! We were going to have a tiny human. 

Fast forward to August 5th: our ultrasound day. I was bursting at the seems with joy, so excited to show off the tiny human growing inside me to my husband so he could see too! Well the ultrasound showed tiny baby B had no heartbeat. It was a failed pregnancy, aka miscarriage. 

We started to try again in December... January was tough with being away during fertile days due to training for my new job. February brought so much anxiety because of the scheduled MRI. 

Finally MRI day comes. It's a day I've been dreading for a while, 3 hours in a tiny tube with the most magnetic magnets circling me. Why does it have to be so LOUD???

Today, I had the results read (and shown) to me. It's so strange seeing all the weird, wavy layers of your brain and spinal cord in black and white and cloudy images. The cloudy images are the ones you don't want to see... and I have plenty of those, both new and old. The new lesions (that's what the cool kids call them...) are the ones that scare me. Terrify me. 

Today was the first time my provider said adoption and surrogacy might be the best options for us. It's not that we can't keep trying, but the longer I'm off any medication, the more likely I am to have an attack which is scary. I've had three really scary attacks in the past and have been lucky enough to recover from them, but there's always a chance recovery won't happen. So here we are, time is my greatest enemy right now. Being 34, continuing to not be on medication. So I have to make sure I'm as healthy as possible for our future family. And if we don't fix it ASAP... The distant future might not be so bright. 

We are going to keep trying to add to our family organically for the foreseeable future, but will keep options open. I'll be starting a new DMD soon, an infusion that has some studies in pregnancy, and has shown it's relatively safe. 

My body has been failing me for years, and it's beyond frustrating. Send positive vibes our way <3 <3 <3 

Empty Glass

2019 has been one emotional roller coaster after another. It started off amazingly! We spent time with good friends in Las Vegas for the New Year. Then again for the most amazing wedding in Mexico in February. 

We started the journey to add to our family in May - I had been off my MS medication for three months. I thought I knew what I was in for, but the reality of this year has cut into my soul deeper than I thought possible. How tough was I?!?! Someone that could handle anything thrown at her. My friends and family continuously tell me how strong I am. 

But this year has cracked my foundation. I'm not strong. I'm not undefeated. I'm not tough. Let's talk about it. 

New MS lesion activity. The first active lesion in 4 years. 

Pregnancy. Exciting and terrifying! 

Miscarriage. 

Decision time: 4 options.

1. Continue to try without DMD 
2. Continue to try with a low risk DMD 
3. Continue to try with a high risk DMD that will better regulate MS symptoms and progress but potentially cause injury to myself and fetus
4. Stop trying and continue with previous medication

All while also considering how many children we want to have - it may be just one. Not a decision that needs to be made today, but should be soon. No pressure. 

So, let's talk about the photo. It's the drug I am considering right now, if I decide to go back on a DMD. Copaxone is a small synthetic protein, made to mimic a fragment of myelin. It consists of four amino acids, the building blocks of proteins, that are found in myelin.

It's the safest DMD to start taking while trying to conceive. Also. WTF is a DMD right?! DMD = Disease Modifying Drug. 

In the smallest amount of time, we have our entire future to decide. Give us all the good juju. My glass is empty, and it needs some good vibes <3

Recovery

It's been about a month since the miscarriage. I'm still unsure on how to feel, so let's blog about it. Writing is one of my favorite things and helps me get my feelings out.

The first week following the loss was the hardest of my life. The entire process of being pregnant was so exciting, then all of a sudden it's not... It's so confusing. After the doctor tells you the news, you have 3 options. I picked the second one... and all of a sudden, I'm carrying a dead fetus for a week before we can separate. Bonding with something no longer alive, but something I am so scared to lose. Walking in a deep fog every single day like a zombie. Pretending to be happy and OK when I was severely NOT OK.  Actually having the miscarriage was painful both physically and emotionally. They never prepared me for the fact I'd have contractions. Contractions. For two hours. 

During that week, I questioned everything. Is the Doctor sure the baby didn't have a heartbeat? What did I do to deserve this? Should I have been a nicer person? Did I do something wrong? I've already had to endure so much as a young women. Why is this happening to me? 

Let's talk about something: Honesty. This is super difficult to write about but I feel like it'll help me and help others. Especially because I don't consider myself to be overly sensitive. 

I love the fact that so many of my friends and family have wonderful tiny humans in their lives. I love hearing stories about their milestones. I love you and your families. 

But it is not easy to hear about all of this going through such a loss. Every mention of your amazing child reminds me of the tiny human I saw on that sad ultrasound that I will never get to meet. Every first... when they roll over. Their first step. Every time they wake you up in the middle of the night crying.

To my very core, I believe that we will get to have the experience of having a family. No matter how it shakes out, we will get there. Don't stop sharing your stories. My replies will become longer than just heart emojis <3 and "Awe".