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.