Happy 2nd Birthday Olivia!!

 She's our ray of sunshine reminding us how beautiful life is.

She has the ability to say, "I love you," without needing any words.

She is everything to us & us to her.

She is beautiful inside & out.

Cheers to 2 years old mi amor!

Healing Journey PT.1

 

Surface Level

I want to start off by noting that my healing journey is one of continuous healing. There is no heal it, burry it, let’s move on for me. Just as I want to continuously evolve and grow; similarly, I want to endlessly heal from the past, present, and whatever may come for the future. There is always a journey to walk for each one of us and that’s the truth.

My healing may also look different from yours. For me, it’s not just healing from a 1-time event. It’s learning to heal daily as diagnosis for my daughter continue to roll in, or as we continue to work on daily seizure control. But how do I do it? That’s a common question I get asked but let’s start from the beginning.

What got me to finally seek a therapist wasn’t this epiphany “Ah Ha” moment, it was my husband. I was well aware of the importance of mental health from previously working at a clinic but yet I still chose to ignore my own red flags. The arguments my husband and I would have after our daughters’ birth were not only increasing in amount but by intensity too. Until we both reached our breaking points. The night before we had a heated argument and by late morning the atmosphere had completely shifted. That morning at our dining table we discussed our differences from the night before and things were not looking good for us. It honestly felt like a mental breakdown for me but that discussion forced me to dig deep and be honest with myself. I needed help. What I was currently doing was not sustainable for being all I could be for Olivia. It was not sustainable for being a good wife. Most importantly, it was not sustainable if I wanted to continue loving and caring for myself.

My core was shaken, my peace was disrupted, and my soul was broken when we discovered what the storm had destroyed regarding our daughters’ brain. Trying to heal on my own in my own way from that proved to not be sufficient enough. The emotions I felt were soon masked with new ones and had shifted and directed towards my husband. Faith was always my go to when I faced a hard time in life but I soon found myself questioning the presentation of how God was portrayed to me growing up. I’m so afraid to pray. I grew up in a Christian home and was taught when life gets rough you go to God even more so. When I prayed for God to look out for my little twin boys in my belly, they ended up in heaven. What if I pray for God to watch over Olivia and she disappears from my arms too? I can’t break like that again. She’s a tough baby to handle but I can’t fathom not seeing her pamper kicking smiling face every day. How can I heal when one of my core structures in life, my faith, isn’t even structured?

By the end of that week, I had scheduled my very first therapy appointment. I didn’t care about the stigma around only “crazy people” seeking therapy or how you’re labeled “unstable” for seeking therapy. Which by the way, both of those are false. I only cared about becoming healthy for me and for my family. If people wanted to judge me then quite frankly, we probably weren’t the best of friends. Although therapy has been a tremendous step forward for me in learning different healing methods, it’s everything combined for me that helps. From blogging, to opening up with friends and family, therapy, faith, me time, and etc. But healing is not easy. It takes intentional time. I’ve learned to bask in the good times to outweigh the bracing for the next emergency times. The most important thing I’m proud of thus far on this momma’s healing journey is taking that step back to heal with my family. Ignoring the distractions and working to build a positive life. A life full of hope even on our worst days.

 

HIE Community Part 2

 

Below is our specific story that will be shared in the HIE community book that is set to be published later this year. I encourage anyone reading this to check out the book and other family stories as there are such a wide range of outcomes. We are just in the beginning stages of ours and I am so elated to read the book that will also have medical staff's stories too. It will be available for purchase through Amazon and there will be a digital version available for download, more to come!

 

 

  

Tina’s Story: Learning to Live, Not Just Survive

 

After having a miscarriage with twin boys a year before, Tina so desperately needed things to go well during her pregnancy with Olivia. There were a few minor issues along the way—around 28 weeks in, Tina was told Olivia was measuring pretty small, and Tina developed gestational diabetes during the end of the pregnancy. Because Olivia wasn’t growing at the rate she was supposed to, the doctors informed Tina that when she would deliver Olivia at 37 weeks, her daughter might need lung support. But never was she warned about what was to come.

 

After Tina pushed one final time in an induced labor that fell 23 minutes short of 40 hours, the doctor reached out to lay Olivia on Tina’s chest. When Olivia only made it to Tina’s lower abdomen instead of all the way to the chest like she is supposed to, the doctor instinctively blurted out, “Wow, that’s a really short umbilical cord." But as a new parent, Tina didn’t know how long the umbilical cord was supposed to be—in that moment, all that mattered was the warmth that suffused across Tina’s skin as she came into contact with Olivia, vowing to protect and love her beautiful baby girl unconditionally. Her husband, Daniel, then cut the cord. They knew the doctors needed to see if Olivia would be able to breathe on her own, so after a moment of soaking in the overwhelming joy of parenthood, they handed Olivia off to a NICU nurse for the necessary assessments. At merely 4 pounds 5.6 ounces, Olivia was tiny. But what shocked Tina and Daniel most as they handed Olivia off to the nurse was not her size, but her pale gray complexion and the floppiness of her arms. Images of worst-case scenarios swirled through Tina’s mind, and it seemed like hours before they received an update about Olivia. When the door finally opened again, sounds of cheers filled the room, as it was announced that Olivia was safe, healthy, and able to thrive on her own. Tina wanted so badly for this to be the ending of her birth story. She wanted to believe that everything was okay like the nurse said it was, that all the pain she endured along her journey of becoming a mother—from the loss of the twins to the anxieties during pregnancy—was finally over. But life is messy and unpredictable, and so too was this HIE journey they didn’t realize they were just beginning to embark upon.

 

Surrounded by their mothers and Tina’s siblings, Tina and Daniel tried to hold onto the happiness of being new parents. As she held Olivia, all bundled up in a white hospital blanket, Tina was amazed at how something so tiny could also be so precious. But she also couldn’t help but notice how pale Olivia was, like a fragile porcelain doll—a delicate and beautiful but inanimate, motionless porcelain doll. Tina did not want to seem like one of those crazy overly anxious mothers, so she casually mentioned her concerns about Olivia to the labor and delivery nurse. The nurse tried to stimulate Olivia multiple times, but she still wasn’t getting much reaction. Concerned, she told the main NICU nurse that she was uncomfortable with Olivia being left for the night with her parents, since her tone and color were not typical. However, the NICU nurse confidently stated that since Olivia had passed the necessary “tests,” these worries were unfounded. Thus, Olivia was left with Tina for the night. That night, Olivia would not feed at all, and when she was lying down, she seemed eerily still. Tina kept trying to convince herself not to worry. The NICU nurse, without hesitation, had said Olivia was okay, so it must be true, right? “Right,” Tina kept repeating to herself. “Wrong” was not an answer she could bear.

 

But that morning, all of Tina’s visceral fears came to life. Olivia went to the NICU to get labs done, and once her vitals were finally checked, her oxygen levels were in the 70s, severely low. Olivia’s visit to the NICU was just supposed to be the final, quick “okay” before going home. So, when Daniel and a nurse came back to Tina’s room explaining that Olivia had been admitted to the NICU indefinitely, she completely broke down. Even with both Olivia’s grandmothers and her uncle in the room, Tina could not hold back the tears that seemed as if they would flow forever. After a couple hours of rest since her body was physically exhausted from the lengthy labor and delivery, Tina was wheeled to the NICU to see Olivia. Nothing could have prepared her for the terrifying image she saw. Olivia was hooked up to a large CPAP machine so that her face was covered, an IV was connected to her scalp, there were 28 EEG leads coming out from her head, she had stickers all over her chest, and she had a towel that was strapped down over her tiny body. Guilt and confusion flooded over Tina, and the whole world just seemed so surreal…. this had to all be some sort of sick nightmare. Her prayers and hopes shifted from wishing for a healthy baby to wishing for a baby who was still alive. No one had even informed Tina or Daniel what all these machines or wires were for, so they felt utterly buried in the dark. A pediatric neurologist finally explained what everything was for, and after a few MRIs and EEGs, Tina kept hearing that Olivia had suffered a perinatal stroke that left the entire back part of her brain severely damaged and filled with cysts. During the 26 days in the NICU, that is the word Tina remembers hearing most—stroke. She actually did not hear the term HIE for quite a while, and she just felt so lost, like the gloom and doom would never end. Upon receiving the MRI results, the neurologist said that Olivia would likely have a lifelong seizure disorder, be completely blind, have a speech delay, and develop cerebral palsy. Tina asked for the neurologist to rephrase some of what he was saying, searching desperately for even a tiny sliver of hope. As a fix-it type of person, she remembers asking him, “What can we do to get out of this situation?” Unfortunately, there was no escaping the new reality they would have to learn to live with.

 

Those 26 days in the NICU were exhausting and characterized by an abundance of any and all emotions, but Tina and Daniel were there every step of the way. They were able to stay in a room in a different section of the hospital, but the communication from the NICU to them was fragmented at best. Tina quickly learned that to stay updated about what was going on with Olivia’s care, she and Daniel needed to be present at rounds each morning. At the hospital, Tina and Daniel learned the basics of how to take care of Olivia, learning how to bathe her, feed her, and give her seizure medications. But other than that basic training, they did not receive resources, an explanation as to what HIE was exactly, or clear instructions for next steps. They were essentially discharged with the advice to just take Olivia home and love her. Two days post-discharge, Olivia ended up having an apneic event and turning blue, so she was admitted to the hospital (a different one from where she was previously) for around a week. After that week, they were finally at home for a bit and began to settle on the rhythm they have landed on now, one and a half years later. Tina and Daniel have since decided to transfer all of Olivia’s appointments and therapies to a larger hospital in Seattle, and even though it may be further away from their house, they would travel the ends of the earth if it meant giving Olivia the best care possible.

 

In the beginning stages of being at home, Tina was essentially operating on survival mode. Her days were filled travelling from appointment to appointment, and by the end of the day, it was hard not to feel completely drained. However, Tina is grateful for all the supports she did have along the way. Both of Olivia’s grandmothers are extremely engaged in her care, willing to lend a helping hand to relieve some of the childrearing burdens off of Tina and Daniel. Their siblings have also begun to learn how to best take care of Olivia so they can help out as well. In addition, Tina is grateful that because she worked for her stepdad part-time, he was flexible with her if she couldn’t come in for work at the last minute because Olivia was having seizures. And when Tina learned about Hope for HIE from a coworker a few months into Olivia’s HIE journey, she finally found a community of people who were able to understand what she was going through. Upon joining Hope for HIE, Tina felt like for the first time in a long time, she was gaining some semblance of clarity. By connecting to different HIE moms, Tina was able to learn about different treatment options and conditions associated with HIE, and that information gap she struggled with for all those months began to close. Even after the neurologist said that Olivia would be completely blind, Tina could swear that every time she opened the blinds a little bit to let light seep in, Olivia would flinch. When she would tell others about this, they would just dismiss it, saying Olivia probably just heard a faint noise when the blinds moved. They probably thought Tina was in denial, not willing to accept a reality in which Olivia was fully blind. However, upon joining the group, Tina learned that there were levels of blindness, which is something she had never considered before, and she also learned about the possibility of cortical visual impairment (CVI). Upon taking Olivia to the ophthalmologist, a diagnosis of CVI was confirmed. After all that time being labelled as “in denial,” it felt empowering for Tina to know that her mom-gut was right all along. Another aspect of Hope for HIE that Tina really appreciates is that it’s not only a community of parents, but also a collaboration among providers and parents, ensuring that the knowledge that is shared is reliable and evidence-based. And in a journey where the sadness can feel all-consuming at times, the group has been a source of hope and beacon of light. Learning about neuroplasticity through the forums and how the brain can adapt and evolve over time has been a game changer. 

 

For so long, Tina felt suffocated by the trauma and guilt associated with Olivia’s birth. She would lay awake at night thinking of all the what-ifs: What if she had been more adamant to the nurse that Olivia was not okay and should have spent that first night in the NICU? What if she had realized that something wasn’t right sooner? In addition to the HIE journey, Tina has had to start on a journey of self-forgiveness and realize that with the medical knowledge she had at that time, she did her best. She may not have been perfect and she will never be perfect, but who is? On top of all that, she had to cope with a different type of loss…. not the loss of life in the literal sense, as with her miscarriage, but the loss of the life she thought she would share with her daughter. She had all these dreams and visions of Olivia running around in the backyard with the dogs or Olivia joining sports teams in school, and in an instant, all of this was flipped upside down. In the wake of this loss, she lost sight of who she was as an individual, as a mother, and as a partner. There were days where she felt such deep shame—shame for not being that perfect mother for Olivia, shame for feeling sad when her daughter was still alive, shame for arguing with Daniel instead of considering the unique pain he felt as a father. She realized that keeping all these feelings buried to herself was only preventing her from rediscovering who “Tina” was in this new, unanticipated life. So, after the encouragement of a friend who had blogged throughout his own mental health journey, Tina decided to start her own blog, pouring her heart out into the world and being more vulnerable than she had ever been before. For her, putting her thoughts and emotions to paper and being open about her feelings—the good and the bad—has been irrevocably cathartic and freeing. Since writing her first post when Olivia was five months old; she has received so many positive responses from friends and family members who are appreciative of the rawness of it all. Even though it is terrifying to share the deepest parts of herself for anyone to judge, Tina has felt more empowered than she ever has. Through not being afraid to speak up, Tina hopes she can inspire others to similarly open up and help others realize they are not alone in their struggles. 

 

In addition to blogging, Tina was willing to try anything to climb out of the hole she felt trapped in. She started seeking therapy to deal with her trauma, reading self-help books, and even posting different motivational quotes on her mirror. To any HIE parent out there who feels adrift in a foreign world, Tina cannot emphasize enough the importance of finding what works best for you to work through the trauma and begin to move forward. From the get-go, Tina has learned that without some sort of outlet or way to engage in self-care, the days can so quickly consume you. For her, there have been days where she has to get work done, take Olivia to multiple appointments and therapy sessions, and on top of that, try to cook and clean and maintain the household. For a while, she felt completely depleted before bed, and her mindset was so focused on merely surviving the day instead of proactively enjoying the day and remaining grounded in it. Now, she still has days where she feels like she is barely holding on, but she is beginning to open herself up to more joy and lightness in her life than she ever thought was possible when she first learned about Olivia’s HIE. She has become more honest with Daniel about how she is feeling, and she has realized just how much of a difference having a partner who is on the same page as her has made in her own life. Tina would tell other HIE parents who are in relationships to not forget to check in on their partners and to keep an open line of communication with one another.

 

Tina had always grown up with the mindset that you have this disease, and then there is this cure—it’s a one and two and then done. But throughout all of this, she has come to accept that with HIE, there is no simple linearity. Instead, the journey with HIE is a slow, ongoing, constantly evolving process, so instead of focusing on how to “fix” or “cure” Olivia, she has learned to appreciate the everyday moments and inchstones with her beautiful daughter. Even if Olivia’s progress may not be visible day to day or even month to month, Tina reminds herself that Olivia is doing big things in little increments, whether it is putting a little bit more weight on her foot than the day before or making it successfully to the beach without having to pull over due to Olivia’s seizures. Yes, life may be complicated with all of Olivia’s diagnoses, but Tina doesn’t want to miss out on the happiness of motherhood by focusing on a future she can’t control. Now, at one and a half years old, Olivia is an animated, energetic girl. She loves being around people, talking on FaceTime, and moving around a lot. Her smile can brighten up even the darkest of rooms. Even though they may have a long way to go and are just starting on their journey, seeing how far Olivia has come from when she was born to now is hope in and of itself.

 

Tina is not only proud of who her daughter is becoming, but she is proud of who she herself is becoming thanks to Olivia. Olivia truly is the greatest teacher Tina could have asked for, teaching Tina about accessibility, inclusion, advocacy, and patience. Before having Olivia, Tina never mocked people with disabilities, but she also never thought twice about accessibility or was careful with her terminology. Now, Tina has become a staunch advocate for those with disabilities, educating those around her about accessibility through her blog, social media, and daily conversations. In addition, because of Olivia, Tina has learned what true patience is. She has learned that a developmental delay is a comma, not a period, and even if Olivia will not be rolling over tomorrow, it’s finding value in the seemingly small things that matters. She has become so much more grateful for everyday life and celebrating the tiny victories, and when the road ahead seems too daunting, one saying really resonates with her: “Is it impossible or you just don't know how? Because if you don't know how, that means there's a way. “It reminds her that even with HIE, it is not impossible to live happily, and just because progress may be slow, it doesn’t mean that Olivia will be stuck where she is at forever. And even if Olivia may never reach certain milestones, this life that they are building together will have no shortage of love, faith, hope, or joy. The relevant question is not, “What will tomorrow look like?” but “How can we find the meaning in today?”

 

HIE Community Part 1

We are touched that Olivia's story will be apart of the new HIE Community book that will be published later this year. It takes a lot of courage for families to share their stories. Below is the interview regarding our early journey, more to come!

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**Correction: Olivia's NICU stay was in Renton, WA and then she transferred care to Seattle, WA**

**Correction of Quote: "Is it impossible or you just don't know how? Because if you don't know how that means there's a way."**

 

#HopeForOlivia

 #HopeForOlivia

Olivia was diagnosed with hypoxic ischemic encephalopathy (HIE) at birth. It's a type of birth injury causing newborn brain damage that is caused by oxygen deprivation and limited blood flow. Originally my sister started the hashtag #HopeForOlivia shortly after she was born and we decided to continue to utilize it.

 April is HIE awareness month and this year was our second Hustle for Hope 5K that we participated in. It was created by the group Hope For HIE to increase awareness, education, and support. This year Olivia was apart of their promo video and I was so happy to see my baby in it. It's not a sad month for us anymore. It has now become an informational month for us to be able to educate others about her health.  Both times, we have had enormous family and friend support walking, running, and rolling for Olivia. They would hashtag pictures #HopeForOlivia #HopeForHIE #HustleForHope. We know we're not alone in this and together we can and will flourish. 

Below are the 2021 Hustle for Hope 5K photos
Thank you from the bottom of our hearts to everyone who is helping to make this a yearly tradition :)

 

Advocate or Asshole?

 

In and out of consciousness, contracting little body muscles, wandering back brown eyes, cold limbs begging for warm blood flow, over and over and over x30. Each time wearing on your precious brain until you’re completely knocked out. I feel like a failure the more I watch because I can’t provide you with the relief your body hungers for. I’m scared and so sad but it’s time for me to put on my big girl pants and head into appointments to advocate for you. Or at least that’s what I thought I was doing. Fear didn’t come out of my mouth; tears weren’t running down my face. No, in fact I found my voice getting louder and demanding while my tone was getting sterner. Then I would recap visits when I lay my head down at night, when my brain won’t let me sleep, and I realize how rude I was becoming.

My mom explains “little Tina” as stubborn, constantly giving push back, questioning everything, and her strong willed child. But why was I always in fight mode? I have no idea and I’m sure I’ll go over that in therapy. What I do see now though is that Olivia needed a momma like that. I was advocating for her in the only way I knew how. I used what skills I learned as a child that got me by.

There came a point though where I turned to my husband Daniel after an exhausting visit and told him, “I don’t want to be a bitch.” I don’t like being a mean person but at that time it felt like the only thing that was keeping me heard. I’m a big advocate for respectful, honest, direct, and effective communication. But yet here I was acting like I had no right upbringing with the thought that disrespect would get my daughter what she needed. I was no longer advocating, I was becoming an asshole. I was tired of going into every visit like it’s a boxing match and leaving exhausted. I needed to really define advocacy and what I wanted that to look like for our daughter.

We had 2 unplanned hospital admissions 2 weeks apart from each other again. The most recent one was where I learned all about advocacy, but this time from my husband Daniel. Olivia’s seizures had evolved at this point and the Lennox-Gastaut syndrome (most severe form of epilepsy) was now being discussed. Late morning had hit when the neurologists made their way into our tiny little split room. He began to explain that the overnight EEG Olivia was hooked up to did not show any signs of seizures. Before he could even finish I immediately interrupted him. I then began explaining that I clearly saw the spikes on the EEG myself correlating with her seizures. I was mad and it was evident. I might not have rolled my eyes or name called but my tone & stance & everything else about me was screaming, “YOU’RE WRONG!” Daniel watched and listened just as the neurologist did and neither one of them interrupted me. After my rant, the neurologist agreed to go back with an epileptologist this time to look over the EEG results again. Unfortunately, we did not see that neurologist the remainder of our stay. 

Once again the nurse was ready to administer a new medication without us first being informed by the neurologist what the final results were. We had to learn from her that Olivia was diagnosed with myoclonic seizures (a new type for Olivia). When I researched the medication online and received handouts from the hospital the very first side effect was “rash that may lead to death,” and not too far down from that was “metabolic acidosis.” I know you’re probably thinking I’m a dramatic side effect gal reading way too much into it. But let me tell you, when your child has fallen into that very small percentage multiple times, risk numbers no longer mean anything to you. Everything must be taken into account. Needless to say we were not willing to trial this medication. At this point Daniel had enough and told me, “we are going home and will wait to speak with her neurologist about starting the ketogenic diet.” I was like hold up, we’re doing what?! He explained that we need to regroup without the pressure of medication pushed on us. I know I didn’t want to start the medication either but that seemed a little extreme, I mean our daughter is currently having seizures and they’re not completely wrong. I found myself wavering from what Daniel and I had originally discussed for treatment options.

 I finally gave in and told him to take over and speak with the specialists then about our decision. As I watched him speak with them through all their attempts at convincing us to stay in the hospital, I was able to gain insight to what true advocacy was. He was respectful to their professionalism as specialists but also stern in the fact that Olivia is our daughter and we will choose what’s best for her. There were no interruptions, no voices were being raised, and no one being an asshole. When we finally left the hospital a feeling of excitement washed over me. I discovered how monumental this was for me. It was the crossroads of speaking about advocacy and where actual advocating finally met. If I didn’t have Daniel there with me, we probably would’ve been in the hospital another week. He pushed me to act out what I speak and to not be afraid for doing it either.

To even think about going against a doctor’s better judgement was a big no no growing up. Providers sacrifice so much to complete their schooling and go into a field of selflessness helping others. For that alone I have an enormous amount of respect for them but I had to learn to not fear them. I will forever be grateful in the work they do for Olivia but I now understand that I am her mom who is responsible for the decisions made. It’s okay to not agree and find another path to treatment. There’s no need to yell or act as enemies, because in the end we are all wanting to see Olivia succeed. While Olivia fights for life, we will fight to advocate for quality of life.

Emotional Suicide

 Emotional Suicide

I didn't order this life, I didn't choose this life, and I most definitely didn't sign up for this. The more I push back, the deeper this concrete life sets in. I still want to cry, I still want to yell, why can't I just accept what is and move on? The adrenaline of survival mode has now worn off and the devastation of what happened to our little family and what we walked through is now setting in. I dipped my toe into the lake of depression with the loss of our boys and I knew that feeling was creeping back in. It's terrifyingly dark yet so easy it can consume you.

I vowed to myself to fight ever falling into depression again. I’ve seen the capabilities that has over a human’s life. Every single one of my siblings has been suicidal at some point in their life. Starting at such a young and vulnerable age, I’ve visited some at a medical facility and others at the hospital. I’ve bared witness to a suicidal attempt as I begged my sibling to stop while calling for help and I’ve been on hunts looking for my other sibling praying to God I make it in time to find them. Life is hard and devastation brings a pain that few are willing to walk through. I am grateful for our support pillars in our life because without them I’m not sure if I would’ve ever discovered how to walk through grief. 

Grief is defined as the response to loss; an acute pain that accompanies loss. It can be a strong and sometimes overwhelming emotion for people. It can cause numerous negative effects on your body and imprison your mind. After reading my first published blog again “Please don’t be mad,” I realized I outlined the steps of grief through my walk. I have heard of “steps of grief” but never knew what they were until I researched them for this very blog post. They are outlined below as:

1.       Shock; denial; isolation

2.       Anger; pain

3.       Bargaining; guilt; questioning

4.       Depression

5.       Acceptance; hope; reconstruction

What I didn’t understand until literally this morning was how it can be a cycle of steps and that’s okay. My thought process before was, “Oh no I’m sad again, I must’ve never really worked through it.” But that’s not true; I learned you can go through these steps at different points in your journey at different levels. I thought if I could experience all 5 steps then I will have made it to the finish line and all will be well in the world. Just because I was hopeful yesterday and angry today doesn’t mean I was pushed back 10 spaces in my healing walk. I’m learning an immense amount through life experiences. My next blog post may be completely different but that’s why I love writing through grueling times. You can look back and see progress; you can look back and see the light bulbs turning on. I was told to only share a journey once you’ve made it to the other side, but I disagree. I believe the connection comes from living it out in the moment. So that’s what I’m doing and plan to continue. Thank you once again for following our journey and seeing where life takes us.