"June 6th, 2:14 am
Leah was laying prone for about 3 hours but continues to desat every few minutes. They bumped her oxygen down to 70%, as opposed to the 100% she was getting through her vent before, which could do damage at such a high percentage. At home she usually is on 30% and keeps her saturation at 100% on her pulseox, but she's been on 70% and her sat are still only 88-93%, even on that much oxygen.
They laid on her back again, but its not making much of a difference. I'm too scared to go to sleep since things are so up in the air with her breathing right now.
The docs just came in and they want to check her oxygen in her blood by doing a IV blood gas, but if that doesn't tell us enough, they'll do an arterial blood gas, which they would have to poke her for. They are calling the attending now to let him know what's going on, while they try to fire out what the next steps are.
Tonight and today actually have been really stressful. She had the surfactant medication treatment done at around 3 and she actually tolerated it pretty well, but our doctor also told us that her lungs were looking worse than he's ever seen them which could be attributed to infection since shes had fevers every day since Sunday. but its developed into acute respiratory distress syndrome (ARDS) and that means her lungs are really weak and aren't ventilating well or expanding fully. The surfactant should help them expand more though. She been so tired , I think because her heart rate is high, 150-165 bpm and then her lungs can't expand fully, plus her heart was having some issues a couple days ago because she had gotten too much fluid, and her heart is already overworked and too thick, so it working harder is not gonna help her.
At this point there is no word on when we'll go home, but hopefully she'll get over this pneumonia soon.
I had been complaining to Zev about the ugly rough hospital gowns they put her in and how I wanted to make her some custom prettier ones. We went out yesterday and bought some pretty fabrics, materials and a sewing machine so that I could work on them. Last night I worked on one until about 3 am, and tonight as well, I just finished #2. I've never sewn anything in my life, but luckily the machine came with instructions and I have common sense so I learned a lot on the first one (aka made a ton of mistakes) then made the second one almost perfect. I have another 5 to go...but I won't tackle them tonight."
At this point the attending had come in to see Leah. She was desatting more, this time her vent settings had gone up to a peep of 12, a respiratory rate of 32 and she was getting 100% oxygen, but she was still only able to get her sats to mid 70s-mid 80s. The doctor looked at us and told us that at this point, he really didn't see another option other than escalating and giving her an arterial blood line to monitor her blood gas and give her more blood pressure medication. She was sleeping restfully with her heart rate at only 119 bpm, and her blood pressure was extremely low and we sort of looked at each other and didn't know what to do. We didn't understand what the doctor was saying to us, couldn't see that his option would not stop her from de satting, since it wouldn't do much for her lungs and 100% was as high as they could go on the O2. One of the nurses who has been caring for her for the past few nights as well as earlier during her hospital stay, was Jamie. She spoke up and told us "wait, do you understand what this means? It's a higher form of life support and what will happen is that they would do this invasive procedure where they insert a line into her groin, so it ill be very painful for her. This will only allow us to do so much, and probably wouldn't change her respiratory status. If you do this, you need to be the one who makes that decision. We can't do that for you, do you know what I mean?"
Zev and I looked at each other and excused ourselves to discuss privately outside the room. As soon as we got to the hallway outside the unit, we both burst into tears because we knew that we had gotten to this point. This point in time that we both was coming someday and always avoided speaking of, because we never wanted it to be an option. We never thought it could be an option, but here we were. Faced with the most difficult decision a parent can ever make. We had promised each other that if it ever came to this, we would do what was best for her, not us. We had to evaluate the situation in terms of what would cause her the least amount of pain and not keep her going just because we wanted to keep her with us. It wouldn't have been fair to her for us to subject her to more pain, all for what? It wouldn't have changed the fact that her lungs were not able to keep up anymore. She would continue to desat, like she had been for the past 8 hours, and keeping her at 100% O2, would eventually become toxic for her as well. It wouldn't change the fact that her heart was failing as well, and it would drag out longer and probably be more miserable for her. The doctor came out to talk to us and once again we asked him what else we could do, if we had any other options at all, but he shook his head, no. He told us that they could make it painless for her and we could take some time, to say good he to her.
I called my mom at 3 am. I told her the news and that she needed to come down to the hospital to say good bye to Leah. I called Leah's brother as well, and they both came over. One of Zev's close family members lives on the east coast, but had been in an argument with him for several months so they hadn't spoken. I thought it best to put that aside and inform her of what was going on, even if she couldn't be here in person to say good bye, I didn't want her to find out something like this through Facebook, so I called her. I was in shock when I the response I got from her was "Well I also just had an operation for a tumor they thought was cancer, and I almost died and thankfully I'm ok, but my friend had to come from another state to take care of me, blah, blah , blah" I couldn't believe that I was telling her my 2 year old baby was dying and she was comparing this to her own near death experience, after having lived for over 7 decades. I cut her off, I couldn't continue to listen to her go on and on, "Look, I don't have a lot of time. I just wanted you to know what was going on" I really wanted to tell her that I didn't give a fuck what she had gone through, MY child was about to die! How can someone be so cold that they don't even pretend to be sad about it? Rather, they think somehow their problems are comparable at all and actually bring them up at this time? Her response, " Well, I wanted to let you know what was going on with me too. Thank you for letting me know" That's it. Leah's own flesh and blood. Family really is more than bloodline, as the Mandalorian proverb goes.
Each one of us took time alone to hold Leah and be with her privately to say good bye. She was sleeping so peacefully and I loved the feeling of her little head on my chest. We were able to spend about 3 hours with her, before telling them to begin the process and start lowering her vent settings back to what they had been at home, and to start lowering her oxygen down from 100. They gave her some morphine so that she wouldn't feel any pain when the CO2 became too much for her lungs. She opened her eyes for a few minutes before this started though, and we got to look at her big beautiful brown eyes one last time, as if she knew that's what we needed. The morphine made her fall asleep, as Zev and I both got into the bed with her. Zev on her left, and me on her right, we asked for everyone else to leave the room so we could be alone with her, and just held her between us. We sang to her, her favorite songs; Zev sang Twinkle Little Star and I sang Dream a Little Dream. We caressed her and gave her kisses all over her face and told her how much we loved her. After about thirty minutes, the nurse came in to tell us that her heart was slowing down and it was getting close. I was pressed up against her so tight, I could feel her heartbeat on my chest, so I knew it was slowing down already. Something that gives me comfort is that she could feel my heartbeat too, and I'm glad she got to feel that until the end. We saw her lips turn paler until they were bluish and I felt the last few beats of her heart against mine, then she took one last breath and was gone. She had left that body and was now free from all the constraints her physical body had put on her. The doctor came in and heard her heart on the stethoscope and confirmed her passing, 7 am. At this point, Zev was desperate to hold her, and started removing all the tubes, wires and things that had kept her going so that he could hold his baby girl, like a normal child, without being attached to anything. Then I did the same we both sobbed like children, holding her tight, heart broken and crushed from losing our only child together. The only child we would ever have naturally, who made us try so hard for her. I felt as if someone had removed a large piece of my chest was forcing it down my throat, I couldn't breathe from crying so hard. After everything we did for her it still wasn't enough, but we knew this day could come, we were always just so optimistic that we thought it would happen many years from now. Not so fast, or so young.
Zev cut off her 2 pigtails and saved them in a plastic baggy. I never had wanted to cut her hair, other than her bangs, because I always said I was waiting for a special occasion. Now I'm glad we waited, since her hair was so long and we kept it. The nurse came in with a little ceramic putty to make a mold of her little hand, and we covered her with a blanket. She wasn't in there anymore and we were both afraid of how she would start to look and didn't want that memory of her.
I'm thankful to Leah for having met so many amazing people during this journey with her, because its those same people who were by our side guiding us through everything that followed her death. Gila, our social worker from Chai Lifeline, the Jewish organization that helped us with a variety of things these past 2 years, including food while we were in the hospital. She showed up less than an hour after i called her. Rabbi Pearl Barlev, as well as pastor Lori, another of the chaplains at UCLA, they were with us for the remainder of the day until we went home. The hospital social worker, who walked us through all the feelings we would have when we got home, and all the funeral arrangements. I wasn't in the frame of mind to even think about arrangements but thank G-d for Gila and Rabbi, they took over and started calling places, finding out where we could go. Rabbi knew of Hillside memorial, a Jewish cemetery and mortuary that was close by, and she was able to get them to donate all of the costs of burial, services, casket, etc. The Jewish community has a program for these kinds of events and they stepped in and helped us, which Zev and I will be forever grateful.
That afternoon, we went home, without her. Standing at the valet of the hospital without her but with all her things, was surreal. We were both trying hard not to break down in the middle of everyone, but we did once we got in our car. We had made an appointment to go check out Hillside that day, since the burial had to be on Sunday. In Jewish tradition, bodies are not embalmed so the burial must take place quicker than usual. We went there with my mom and Gila, and we really liked it. It was beautiful there and close by to us, so we decided that's where she would sleep forever.
After that, I remember sleeping most of the day, and one of our best friends, Frankie, came over and cleaned our kitchen while we napped. And he stayed overnight to take care of us.
Sunday we buried her, accompanied by our loved ones and friends. We had a small private viewing before services started so we could see her one last time. I was afraid she would look dead, and that it would scare me but I needed to see her still. She looked like an angel, like she was just sleeping and at any moment, would open her big eyes and smile at me. She was cold. I didn't care, her soft skin was still the same and her chubby cheeks were still squishy so I squeezed them. I still leaned in and gave her kisses and caressed her for as long as I could before they told us the services were starting. Her services were more beautiful than I could have imagined. I had no idea how I was going to speak but I felt her there with me and she gave me courage to come up and say something. I loved what Zev, Frankie and Rabbi Barlev said about her, that she was a bright burst of light, who illuminated thousands of people around the world. It's true, she taught me so much. She changed my life for the better, and I wish she was still here because I miss her so incredibly much, but I also know that she's free now. Free of wires, and tubes, and everything that she had to deal with. It was a lot, I think we tried so hard to give her a "normal" life, that we almost didn't see how hard everything was for all of us. But we still tried, we never gave up on her, we knew she had limited time and wanted to make sure that her quality of life was as great as possible. And she's still with me. I can feel her all the time. Like her essence is still here, and we saw a little floating light on the video of her funeral service. It floated all around us while we spoke, and it could have been some sort of reflection or dust particle, but none that I've ever seen and really, it doesn't matter if it was because for me, I choose to believe its her. It's Leah who wanted to let us know that she will always be with us.
I still break down every time I go into her room, and just randomly when I think about her. I miss her so much it hurts to even cry anymore, but then something calming comes over me and makes me smile instead. We have so many great memories of her, and I'm so glad that Zev was always there with his phone, taking pictures. Even though sometimes he'd drive me crazy, now I'm so grateful to him because we have thousands of photos and videos to look at whenever we miss her. I feel sorry that I'm always the one in the pictures and there aren't as many of him with Leah as there are of me. I took a bunch with him in the few days before her death, but its not the same, I know.
The support we've revived from our friends, and especially my company Riot Games, has been incredible. There are people from Riot bringing us food every day so we don't have to cook ( though it was so much, we had to slow them down to every other day instead), my friend Julie is taking me to the spa on Saturday, and all her nurses from home have been calling us and talking to us or texting us to find out how we're doing. I know that it's been very hard for them too, since they were very attached to her. I think anyone who knew her, was attached to her, but her nurses were one of the team, like us, always there to care for her day to day. We will miss seeing them everyday too.
I'm going to stop here not only because this post has turned into a novel but also because I'm very tired and its kinda late already. I'll probably keep this blog open to write, since its very therapeutic for me, but I hope you will continue to think and pray for Leah, wherever she may be.
Zev is going to post his thoughts later tonight as well, with more of his pics too.
Love and Peace
Here are some pics (they are not all in order,sorry):
|I made her hair pretty|
|the first gown i made her, as she lays prone|