It’s A Wrap

 

“My baby, no matter the outcome, you’ll always be my baby.” That’s what I told myself 3 years ago in the NICU and that’s what I continue to tell myself now. The truth of the matter is though, that didn’t stop me from continuing to search for answers and I finally got some! Back in November of 2021 I shared the status of our legal case and what that current outcome was at that time. I’ll save you the time reading it…we didn’t get far! I had gone through 5 lawyers and not one of them were confident enough to pursue a court case. Legally I now had 10 months left on my ticking time clock to make a case for my daughter in the state of Washington. Once she reaches 3 years old, that’s it. I can no longer take a case to court as her parent. I told my husband Danny, I would drop it and thank God he loves me because of course I couldn’t let it go. He supported me in continuing this journey because he knew there was an expiration date to it. There was a provider’s name brought up, a Dr. Hill, in my online support group by many parents that had reached out to him regarding their kiddos cases and received answers. He was a former lawyer, now a provider, specializing in HIE. I thought, “this is it; this will be my final attempt.” I reached out to him, followed the process, sent the records, and now awaited that hopeful phone call.

It was June 17^th, 2022 at 12:00pm when he finally called. I had my pen and paper ready for whatever information came from the other side of that phone. I knew it had to be either the OB or hospital at fault, in which my anger felt justified, or dreading that it could possibly have been myself at fault during the pregnancy, something I probably wouldn’t be able to face. So, what’s the verdict? Neither! It was unexpected news.

Dr. Hill began to state the reasons why her HIE event didn’t occur at birth due to the evidence shown on record (ok, so not the hospitals fault). Then he began to share why her HIE event couldn’t have taken place even 2 weeks before birth (ok, so not the OB’s fault). Dr. Hill then started shedding light on her MRI, MRA, and MRV taken before we left the NICU at 21 days old. It showed cystic encephalomalacia which can only be seen as early as 9-12 weeks after damage occurrence on those scans. Based on her generation of tissue being seen, he estimated the event occurring in-utero 12 weeks prior. He noted that she also had extremely small arteries, meaning she had a neuro-anatomical reason for decreased blood flow. Since blood vessels for a fetus do not actively react to pressure until they are born, the slightest change in my blood pressure could cause a big enough chain reaction. Since our blood pressure constantly goes up and down depending on daily activity, there’s no way to be able to regulate it to stay at just 1 constant number (ok, so not my fault). Now mix all that together and you’ll see that brain ischemia was built into her neuro anatomy, poor thing didn’t have a chance. Meaning this was unpreventable in-utero and there’s no way anyone could’ve determined that risk factor or catch it. It's taken some time to digest that information. We honestly spent hours on the phone discussing it and going piece by piece over all her records.

Once the conversation ended, I didn’t know how to feel. I expected and braced myself for overwhelming emotions that day, but there was no one to blame. Nothing for me to feel, it was what it was, and that was it. I was now faced to unravel the hurtful feelings I clung so tight to for the last 3 years of my life. That in itself has been a process for me. I first off owe an apology to the providers for wrongfully placing blame. Were there some mishaps that could’ve gone better? Absolutely! But not all providers are bad. I learned that they actually did an incredible work up on my daughter to gain as many answers as they could in the NICU. Olivia’s current providers have shown to be a great team for her and they don’t deserve the trauma responses I dish out. What I continue to work on now is easing myself back into trusting doctors. It’s no easy task and it’s’ taken a lot of therapy but self-growth is not an option for me, it’s a requirement. I need to show my kids that sometimes mommy messes up too and gets it wrong. I’m proud of my perseverance in gaining answers for Olivia’s case because my soul finally feels at rest. But my husband’s right, this does not change my feelings towards my daughter, and it does not change where her current progress status is at. She is my baby just like before, and she always will be. We brace for the worst and hope for the best still, but even if she never walks, even if she never says, “I love you too mommy,” back to me, I will love her just as much. Her development or lack thereof will never waiver the unconditional love I have. So, here’s to closing this past chapter and finally trudging forward!

Happy 3rd Birthday Olivia!!

 

I am oh so very late to adding this but better late than never! We wanted to fully be present and enjoy her birthday this year because it was literally a miracle she made it to 3yrs old. I announced I was pregnant in earlier blogs and that our intent was to give Olivia a sibling. Well, miss Penelope was born 2 days before Olivia's birthday and so we brought her home a baby. What better gift than to gain a sister?

#HopeForOlivia

 

Hustle for Hope 5K - Olivia's Way

 Better late than never! We participated in our third Hustle for Hope 5K during HIE awareness month in April. Olivia was diagnosed with hypoxic ischemic encephalopathy at birth. It's a type of birth injury causing newborn brain damage that is caused by oxygen deprivation and limited blood flow. Hustle for Hope was created by the group Hope For HIE to increase awareness, education, and support. It has now become an informational month for us to be able to educate others about her health. We continue to have enormous family and friend support walking, running, and rolling for Olivia. They would hashtag pictures #HopeForOlivia #HopeForHIE #HustleForHope. This year we decided to call it Hustle for Hope 5K Olivia's Way!

Below are the 2022 Hustle for Hope 5K photos
Thank you from the bottom of our hearts to everyone who is helping to make this a yearly tradition :)

All for You

 

I am writing this blog prematurely. I had envisioned the format completely different, more as a light and happy blessing blog. While I hope the ending of all of this turns out that way, reality is I really don’t know the ending. If you’ve been keeping up with my blogs and/or life updates, you’ll know that we sold our home back in December 2021. Logically to the outsider, I’m sure that was what looked to be the worse timing you could plan to sell your home and move. Little did we know that the market would soon start to change in a few months which solidified our decision. I had anticipated to find an accessible home and move at the end of 2022 since I had just discovered I was pregnant again, so we signed a 1-year rental lease. Daniel thought otherwise and started looking right away after selling our first home.

Just a few months into looking, we found the one. The one that would meet Olivia’s disability needs but allow us to enjoy it as well. It was the home that Danny dreamed about just a couple days prior. We used the same agency, Icon Real Estate Group, that helped us buy and sell our first home. I had told Daniel that our agent, Ronny Wilson, knew what he was doing and had all the connects. He was skeptical because it was a city that we knew we couldn’t afford but Ronny made it happen. Seeing where interest rates are currently in the United States, confirms Danny’s decision to buy now was spot on. This story should end here about how amazing our real estate team was, how we started renovations, and then poof, moved in happily ever after. Unfortunately, this chapter continues.

Daniel began feeling sick, but I thought he was just working himself too hard and his body was telling him to slow down. Made sense since he was working full time and then heading to the new home to complete renovations after work. Only that wasn’t just it. He came up positive for covid and so he quarantined himself downstairs, while myself, Olivia, and my brother stayed upstairs. Two days later I began feeling sick and was at the hospital positive for covid as well. I was released later that night and joined Daniel downstairs to quarantine. Two days after my positive test, our worst fear came to life as Olivia had now tested positive and was running a fever. My brother left the home as he was still negative, and we joined our daughter upstairs so we could care for her. Within hours her vitals were not looking good at home, so I quickly called the nurse. She advised us to take Olivia to the hospital and so my mom and brother came to pick her up and bring her in. I still remember telling Daniel to bring her to me so I could kiss her good-bye. The fleeting thought of a last good-bye sprinted through my mind, but I quickly shut it down. Olivia was wearing her white long-john type pajamas with big bright yellow sunflowers on them. She looked sick and out of it, but still had some life to her. As I kissed her good-bye and she went on her way, I prayed and thought all will be well in just a few days.

Olivia’s health quickly declined and not long after she arrived at the hospital, she was placed on life support. The phone calls from providers leading up to that could never prepare us for that final conversation. Once Olivia was placed in PICU, the providers began calling me quite often with updates and stressing the critical illness of covid that Olivia was experiencing. They said my daughter was the worst covid pediatric case they had seen at Seattle Children’s Hospital. Without going into too much medical details, Olivia’s health was rapidly declining and everything the providers and nurses were doing for her only helped temporarily before she would decline again, meaning it was not sustainable. It was Sunday night July 17^th, 2022, two days after Olivia arrived at the hospital when we got that phone call. My mother had Danny and I on speaker with the PICU provider. Her voice was stern yet concerned. She expressed that we were at the point of potentially losing our daughter. She offered the ECMO machine and as she explained it, I knew exactly what she meant. I clarified, “this would mean Olivia is on life support, correct?” She answered, “yes, this would be a life support machine as our last option to help Olivia.” She stated that she would not offer it if she didn’t think Olivia had a chance of living but that she could also not guarantee this would save her life. With a trembling voice in the background my mom asked, “what are her chances of living?” The providers words cut through the air as she responded, “her chances of dying are very high.” It was an immediate silence on both ends of the phone. As my eyes began filling with tears and the lump grew in my throat, I thought this is a no brainer. She dies without intervention, or she has a shot at living utilizing the life support machine. I believe any parent in this scenario would say, utilize any means necessary to keep my child alive. The provider then began explaining the risks and gaining verbal consent as Daniel and I were still recovering from covid ourselves at home.

All I could do was sit in a trans next to my husband after that phone call. So many thoughts whirling around in my mind of, “how did we get here? Are we really about to lose our daughter? Why us again?!” I then began to get angry (my defense emotion). Losing her just didn’t make sense. We just sold our home and bought a new one, all accessible for her. Why would I have had such a peace about that? We got pregnant so she could have a sibling to interact and grow with. Why would God allow this to happen? It’s not fair, it didn’t make sense to continue life without Olivia.

Within the hour our family began to show up at our home. It was now our siblings and my mother-in-law basking in the overwhelming emotions along with us. My frustration grew as the environment turned somber. There were flowers in the kitchen with family crying. I thought to myself, “she’s not dead yet.” I didn’t say anything to anyone because I knew it was important for each person to go through their own emotional journey regarding the news. But I couldn’t accept it, there was still a sliver of hope. My mom called later that night updating all of us that the surgery for the ECMO machine was a success. We now had to wait and pray that Olivia’s body could overcome and heal itself. My anxiety grew over my phone with each text message and phone call I received. We were granted permission from the hospital that night at 2:00am to be able to go see her. I woke up Daniel and we went on our way because the morning could be too late, God forbid anything. It was trigger central for us the moment we walked in. It was NICU all over again with the machines and cords covering her body, while us not knowing if she’s going to make it. She looked like such a big girl laying there on the bed, but I knew it was because her body was so swollen from all the fluids. It seemed wherever there was a vein, there was also an IV. We talked and sang to her even though she was sedated and prayed that all would be well. Our 2-hour time limit came up quickly and we soon had to go home, once again without our daughter. The next 2 days were such a rollercoaster of informative updates. Olivia’s health took a turn and began to look up. Labs were looking better, her color was coming back, and that sliver of hope was stretching larger. Large enough for her to come off of the ECMO machine and days later then the ventilator.

The unfortunate part about going through a traumatic event is that life continues on. We still had the demand of renovations and moving. Regardless of me not wanting to move without my daughter in a house we were creating for her, it still had to happen. At this point our support team transitioned from meal trains for Daniel and I, now to a moving team to help lighten the burden. I cried but this time with overwhelming happy tears. To see your family and friends show up for you hits the core. My body is in pure exhaustion mode and my mind sometimes still numb. It’s difficult to function during trauma, being pregnant, and recovering from covid. But I can’t give up. I think about Olivia and how much of a fighter she’s been throughout her whole 2 years of life. She was moved from the PICU and is now in recovery in the hospital. Daniel is now able to switch off with my mom to help care for her and I couldn't be prouder of the dad he is and person he's becoming. There’s a lot of healing needing to happen still but she’s here. I prayed that God would keep her alive for me. I didn’t care how long she needed to be in the hospital, I didn’t care the outcome of any potential additional brain and/or body damage, if I could just at least still have her. The same prayer I prayed in the NICU when she was born. The nurses and providers that cared for her the first day she arrived to PICU are almost dumbfounded at her progress. They were honest and said they didn’t think she would make it based on what they saw, but they’re amazed at how quickly she is recovering. A case they’ve never seen before. It’s been 14 days and counting since I’ve been without my little girl. I don’t know what our lives will look like, I don’t even know what tomorrow will look like because of how uncertain life is moment to moment. All I know is that she’s still our warrior fighting her battle in this life and not giving up. As I sit in our new home writing and reflecting, I decided to get it as ready as possible for that hopeful day she does come home. Renovations have been a pain and getting taken advantage of by contractors during difficult times has not been fun, but I have to realign myself to what’s important and charge forward. I am thankful to still have Olivia and I am thankful to have this beautiful home our real estate agent helped us purchase. Olivia’s life isn’t over, and her story continues to blossom. The pieces are slowly being put back together and life is making sense again.

Coming Up for Air

 

Most of you know Bruno; our boxer mix dog; our first baby. He wins the award for ‘most human like dog.’ If you’ve met him, then you get it. He’s been our best friend and Olivia’s watch dog since the very beginning. Even during pregnancy, he would gently place his paw or head on my belly often. Wherever Olivia goes, Bruno is quick to follow behind. I joke that he’s our other babysitter.

He’s also had a bit of a rough patch concerning his health, but he’s always made it through. So, when the time came for the vet to stress the importance of his symptoms being more concerning this time and that he required a surgery STAT, I couldn’t handle it. I felt caught off guard. My brother helped drive him 40 minutes to another facility for the surgery as my mom stayed home to watch Olivia. We met my husband Daniel there and braced for the news of what the costs would be. I always joked that I would sell my house to save my dog, only this wasn’t a joke anymore. We literally had just sold our home 2 months prior and had money in the bank. When the vet told us his chances of making it through the tumor removal surgery were very slim due to its size, not to mention how strenuous the chemo recovery would be for him, the money didn’t matter. I sat in my car in the parking lot and cried with my brother and husband. It was difficult to go through the emotions because I was still so nauseous from being pregnant again. The surgery was not recommended but ultimately the choice was left to us. One of the toughest decisions we’ve ever had to make. If we went for it and he didn’t make it, there’s no chance for a last good-bye. If we don’t do it, his estimated life span was 2 weeks. We ultimately decided not to move forward with the surgery and to take him home, love on him, and give him the best last days of his life.

My brain spiraled to the point of going numb on the car ride home. Once again, I felt that same “zombie” mind shut down feeling like I did when we received the news about Olivia’s health condition in the NICU. There was just too much going on that I couldn’t get a grasp on. We had just moved at the end of December and found out we were pregnant. Then Olivia had a beast set of seizures demanding rescue medication that led to an ambulance ride to a hospital stay in January. And now in February, through all the pregnancy sickness, I’m losing my dog Bruno??

As the days passed, I looked into putting him down in the comfort of our home. Daniel kept mentioning that Bruno wasn’t ready, but I figured he just wasn’t ready. I mean none of us were, but I didn’t want Bruno to suffer either. I finally gained the strength to schedule it for the end of the week and we planned to take the day off. Only Olivia ended up getting extremely sick mid-week and we were forced to take her to Children’s Hospital again. Not ideal since we wanted to spend time with Bruno before he crossed over, but she needed medical attention. I began to pray as we were in the hospital, and asked God for a sign if this wasn’t the time for Bruno to go since his symptoms were now subsiding. The following morning the providers mentioned in rounds that we would need to stay through the weekend, I had to cancel Bruno’s death appointment. I planned on rescheduling once we got home, but when we did, Bruno had welcomed us home like nothing ever went wrong. He seemed completely back to normal. I thought, well let’s give it a couple days and see how he does. Then a couple days turned into a couple weeks, and I am writing this now in July, three weeks away from his 10^th birthday! I don’t know when that time will come for him, but we are soaking up every miraculous day we do get with him. Much like Olivia’s health, it can be so unpredictable. Bruno continues to watch over “his baby” Olivia and they get to continue to share a bond like no other. It’s crazy how much of what I’ve learned through experiences with Olivia, translates into other parts of my life. Such as living in the now and being grateful for the small things daily in life. I am forever grateful of what she continues to teach me.

I NEED HELP!!!

 Staring at the white wall from my bed, trying to focus on the texture, knowing that the slightest bit of movement will cause another vomit reaction. I quickly shift over to my other side once the nausea dies down just a tad to see my daughter Olivia staring right back. She is once again lying-in bed all day with me because I don’t have the strength to pick her up for a change of scenery. Each attempted time to stand up and walk to get her formula from the kitchen, feels like I am walking down a forever hallway exhausted at my wits end about to pass out. Pregnancy has always been tough for me, but this was a whole new intensified level. It finally came to a point where I needed to admit, “I NEED HELP!” I had to waive the white flag, accept that I couldn’t care for my daughter properly on my own, and reach out for help. I felt like shit at first doing that. I felt defeated and incapable. My first go-to person on my list of course was my husband, Daniel. Makes sense, right? He’s Olivia’s dad and lives with us, so logically why not?

He did his very best to help me and some. But slowly disagreements came creeping in. I wasn’t understanding that he not only is working full time but now coming home to care for a wife and a disabled child. And I don’t just mean emotionally. I mean like he was helping to bathe me, make dinner, and clean. It soon became too much for the both of us. We had to explore other options, we had to explore what help could look like in other forms or people. I reached out to family and thank God for them! My mother, brother, and mother-in-law would switch off every day in coming to help care for Olivia and myself. It was such a stress reliver once I finally let them in. Fast forward 6 months later and now my brother is Olivia’s official in home provider/caretaker licensed through the state. Watching their relationship blossom has been one of the many benefits I get to see on the sidelines. It wasn’t easy asking for help but if I knew it would lead to where we are now, man I would’ve asked a long time ago. Blindly trusting is one of the hardest things I continue to learn each and every day. The nausea phase is finally over, and I learned so much through it. We are now focused on the different ways help can look for our family. With another one on the way (IT’S A GIRL!) that need will only increase but we’re ready.

~Yesterday an Advocate, Today a Mother~

 

January 5^th, exactly 1 week after my positive pregnancy test, I was riding in the back of an ambulance again. My heart thumping, my eyes tearing, and a lump in my throat trying to hold back the emotion to prove to the paramedics that I got it together. Ten minutes prior, our little Olivia was just coming out of a 40-minute cluster of seizures in our living room. It was the first time ever we had to administer seizure rescue medication. I quickly called 911 as her dad carefully read the directions and did what was necessary at the 30-minute mark. Her body went limp as the firefighters assessed her and it was a no brainer that we would once again head to Children’s Hospital. I decided to engage in small talk with the paramedic on the way to the hospital to help keep my nerves calm. Repetitive thoughts kept circling in my head of, “stay calm you’re pregnant now, don’t get too emotional because you’ll lose the baby.” But then I saw the paramedic placing the IV, and then the nasal cannula for extra oxygen support, and at that moment I gave myself permission to just be a mom.

I needed to just love on my baby, be vulnerable with my husband, and care for myself. I freed myself from the responsibility of advocacy. Being an advocate for my daughter is a role I will always have but so will being her mother. While it’s great to teach others and bring awareness, quality time with my daughter and family are also great. So, this day I chose to be a mother and nothing else. Tomorrow I may step back into the advocacy world, who knows?  As a parent to a beautiful special needs kiddo we quickly become therapists, neurologists, nurses, etc. for our kids to survive. So much in that we forget we were parents first. It’s not bad to want them to have every opportunity possible to thrive in this world, that’s natural. But don’t forget that if all we did today was hug them, hold them, sing to them, that is more than enough too. Riding with my daughter in the back of an ambulance again while her father drove behind us was very triggering. But in that I was able to realign myself to what was important. We were hoping to never get to this point with Olivia’s seizures but were so glad to have such a quick, responsive, and caring paramedic team along with the firefighters. There isn’t always beauty in the ugly times, but this time there was.

Mommy's fighter

LAUNCH DAY

 

This has been a long time coming, 1 year to be exact. My heart is jumping for joy because I understand how powerful this book can be. Not only is it a much-needed tool/resource for newly diagnosed HIE families but it also helps snip bit family's lives for the general public to see and understand. 

I remember how badly I was searching for something like this when Olivia was diagnosed. Every book I picked up and read just didn't seem to fit our case and now here it is. For me, it's comfort, it's support, it's encouragement, it's hope. I'm grateful to have my niece Payton's artwork piece apart of our story in the book and all the people involved who helped make this a reality. 

So here it is! You can snag a copy on Amazon for your Kindles or Paperback. Also available at Barnes & Noble in print and ebook. Thank you always for following our journey. Like I mentioned in our very first blog, Olivia will do amazing things!

Amazon Link Below:

HIElights of Hope: An Anthology of Stories From Families Who Have Been There: Bansal, Simran: 9780578292083: Amazon.com: Books

Barnes & Noble Link Below:

https://www.barnesandnoble.com/w/hielights-of-hope-simran-bansal/1141391277?ean=9798765560518

The Early Transition

 

I can’t help but laugh when reading the blog I posted in December 2021, right before a life whirlwind. It says, “Part of my healing is accepting life as it comes and I’m happy to move forward with this new chapter and see where life takes us.” Oh, if I only knew what was rolling in my way. It felt like the universe heard those words and immediately said challenge accepted and proceeded to send test after test. 

Let’s pick up right where we left off from the previous blog. We had just sold our home and found a rental right across the street. Like literally the neighborhood across the street. We had checked out a few townhomes, a couple houses nearby, and looked at apartments, but rentals were going quick and none of them seemed right. We were down to the wire and needed to move soon as closing on our home was coming. Then this home across the street popped up just in time. Not our dream place but suitable until we find the home we need for Olivia. 

Should be an easy move, right? Only if a snowstorm hadn’t hit us! We moved in 2 days and by “we” I mean my husband and whatever family he could find available last minute. Some of the family we had planned on asking had gotten Covid and the other half couldn’t make it due to inclement weather. The ones that did make it all slid down our poorly angled hill trying to find any bit of traction they could against the snow. They worked hard in the cold and were our true heroes of the day. Typically, my husband and I make a great power team for things like this, but this happened to be the day I had also FaceTime him to say, “I just found out I’m pregnant and can’t help move anymore!”

“I don’t want you to be strong, I need you to be authentic.”

 

As people evolve through life, trauma can also be a factor in changing and/or helping to shape people as well. My limited mind set never could’ve imagined I would become the woman I am today. As difficult as this life can be, I am so appreciative I have the chance to learn about awareness and inclusiveness. Before Olivia, those 2 words rarely crossed my mind. Most importantly, to me, true authenticity and genuineness have become powerful meanings in my life. Once again, my heart has shifted, and I’ve come to prefer someone genuinely authentic than someone strong. This wasn’t always the case, there were fixed times in life I needed a strong corner of people, such as receiving Olivia’s first diagnosis. Then there are set times I need to feel genuine care and see authenticity to confirm I am still human for this new chapter of healing in my life. I think at times we have a tendency to get caught up in “being strong for someone,” that we can fail to realize that maybe all that was needed is validation or confirmation of humanity. I am not saying one or the other is better, or that they can’t work simultaneously together, but for me personally there’s a season for what I need. Choosing to actively work on healing is not easy, often times it feels like I am fighting to continuously heal but it’s so worth it.

As I continue to heal, I am learning how much control I really don’t have in this life. The more I enlighten myself on taking things as they come, the more my anxiety and stress start to dissipate. Sometimes this comes easy and other times, like these last 4 months, it was forced from survival mode. My brain had officially been overwhelmed to the point of shutting down and needing to just let fate take its course. This realization was hard to accept but swimming downstream and no longer pushing back feels so freeing. But let me back up and share what really has happened to our family these last 4 months that pushed me towards that...........