After submitting all requirements, it was time to get admitted. We chose Capitol Medical Center for the surgery to be done. We would have wanted to do it at PGH because it's less expensive, however, because of the number of covid cases at the hospital, they suggested to do it elsewhere. And since our surgeon has two other hospitals she is affiliated with, we chose what was closer to our home (in case I need to run home for Niko, or need to send breastmilk for him.)
We went to the hospital on May 9, a day before Nia's surgery. It took long before we were able to go up the room. There were questions and concerns because Nia still has a positive result for covid. Eventually after an hour or so of waiting in the lobby, we were finally let up to our room. As promised, we were led to the clean ward. During this time, we were also told that Nia's supposedly morning surgery will be pushed back to the afternoon. Because Nia was still tagged as covid positive, they have to do all the clean surgeries (those that are negative) before her. And she will be the last. It wasn't much of a problem, except we had to make sure Nia doesn't eat or drink prior to surgery.
Our room was a small private room. We chose one that has a hot/cold shower and a bench/bed for companion. I also made sure that there was a ref because I will be pumping during our stay. I wasn't able to take photos of the whole room nor any videos because honestly, we were just so preoccupied the entire time.
We went to the hospital on May 9, a day before Nia's surgery. It took long before we were able to go up the room. There were questions and concerns because Nia still has a positive result for covid. Eventually after an hour or so of waiting in the lobby, we were finally let up to our room. As promised, we were led to the clean ward. During this time, we were also told that Nia's supposedly morning surgery will be pushed back to the afternoon. Because Nia was still tagged as covid positive, they have to do all the clean surgeries (those that are negative) before her. And she will be the last. It wasn't much of a problem, except we had to make sure Nia doesn't eat or drink prior to surgery.
Our room was a small private room. We chose one that has a hot/cold shower and a bench/bed for companion. I also made sure that there was a ref because I will be pumping during our stay. I wasn't able to take photos of the whole room nor any videos because honestly, we were just so preoccupied the entire time.
By the way, we brought a lot of things, you would think we were going on a vacation. We brought 2 luggages, 1 trolley and several small bags. Let me just share some of the things I brought that were practical but not usually somethings you would think of bringing. Because of the pandemic, it was a no brainer that we bring more things to lessen our times to go out, to make sure that we are safe and the air is continuously cleaned.
I brought our own air purifier. We kept that turned on the entire stay 24 hours. Doctors and nurses come and go, and we just wanted to make sure that the air is circulating and purified very well. I also brought an air pump and air bed. We were thinking one of us would sleep there. We didn't get to use it though, because I ended up sleeping beside Nia on the patient's bed. i also brought an air pot, which we used to sterilize and heat water. I have a thermos, we transfer the hot water in that thermos. We used the hot water for hot drinks and even cup noodles for breakfast or snack. I also brought a huge blue gallon of water. I think that's about 5 gallons if I'm not mistaken. Normally people will bring 2 liters water, but I know that my husband and I drink a lot and we will be staying i the hospital for 3-4 days. I didn't want to bring a small bottle only, and end up needing to go out to buy more water. (The more times you go out, the more times you get exposed.) With that said, we brought some snacks, breakfast meals and drinks. I also brought dish soap, sponge, washing/dish basin so I don't have to put the dishes straight into the sink. I also brought a drying and storage rack. Of course, our own cutleries, cups and paper plates Too. One thing that I always always bring is our own pillows, blankets and towels. I also brought extension cord so we can plug whatever we need and my laptop for entertainment purposes. Toiletries and Nia's booster seat, a no brainer.
I brought our own air purifier. We kept that turned on the entire stay 24 hours. Doctors and nurses come and go, and we just wanted to make sure that the air is circulating and purified very well. I also brought an air pump and air bed. We were thinking one of us would sleep there. We didn't get to use it though, because I ended up sleeping beside Nia on the patient's bed. i also brought an air pot, which we used to sterilize and heat water. I have a thermos, we transfer the hot water in that thermos. We used the hot water for hot drinks and even cup noodles for breakfast or snack. I also brought a huge blue gallon of water. I think that's about 5 gallons if I'm not mistaken. Normally people will bring 2 liters water, but I know that my husband and I drink a lot and we will be staying i the hospital for 3-4 days. I didn't want to bring a small bottle only, and end up needing to go out to buy more water. (The more times you go out, the more times you get exposed.) With that said, we brought some snacks, breakfast meals and drinks. I also brought dish soap, sponge, washing/dish basin so I don't have to put the dishes straight into the sink. I also brought a drying and storage rack. Of course, our own cutleries, cups and paper plates Too. One thing that I always always bring is our own pillows, blankets and towels. I also brought extension cord so we can plug whatever we need and my laptop for entertainment purposes. Toiletries and Nia's booster seat, a no brainer.
When we got to the room, we fixed everything and let Nia relax and be comfortable first. It was an unfamiliar place so for sure, her nerves are up there. That night Nia slept soundly.
May 10, the day of Nia's surgery. The next morning came and it was time to put IV dextrose on her. My husband immediately told the nurse the whole story when Nia had blood extractions. He already said that it's a bit difficult because her veins are too small. We also said that we're hoping that it would be a one poke thing.
They ended up placing the dextrose after 2 tries and loads of tears. I, to be honest, couldn't hold back my tears also. It's so painful to watch my baby in pain and undergoing this. They covered her hand with diaper so she won't remove it.
There was a time that I asked my husband, is what we're doing right? I needed reassurance. The whole ordeal shook us so hard. It just showed reality in a way we never thought it would.
We distracted and amused her with toys, singing and lots of Wiggles. We also video called with family back at home. My dad and my sister stayed with the kids. We missed everyone. Dane said that Niko didn't eat much. Maybe, he too, is having a difficult time with the setup. With us not being at home with them. With shobe being away from him.
The whole day felt like a dream. I was "lutang". I actually brought my camera with me because I wanted to document the process, but I just couldn't. We were emotional, trying to keep it together and not let Nia feel our anxiety. My heart was breaking each hour passes because I knew that in a few hours, Nia will be on the operating table and I won't be there to protect her. At the same time, there was a feeling of happiness, that we are a step closer to her hearing us clearly and her being able to speak. I was also grateful. People from all over helped us with Nia's medical bills. We didn't hit our target but it was still more than what I expected. I was so happy that Nia was loved by so many people and are rooting for her. Friends and family reached out and even people who I rarely get to talk to. There were also strangers and anonymous donors too. All of these were in my mind, and these helped me calm down. Because I knew that there are lots of people behind her, praying for her safety and recovery.
I was thankful when she would nap. I knew that she needed energy. It was also easier to keep her away from breastfeeding. I couldn't have done it on my own, my husband, my rock was there to help us in every way.
At 3:30pm, they brought a wheelchair in the room to come pick us up. I was going down to the OR with Nia, while my husband stays in the room.
During the ride, I tried to amuse her with the different surroundings. I didn't want her to feel my nervousness and that my hands were shaking. I needed to be strong for her. I needed her to see me cheering for her. I kept repeating "I love you. Be brave. Remember our promise to each other, that I will make you big and take care of you. And you stay healthy and strong for mommy." Even as I type this, I can't help but cry. She has been through a lot, we have been through a lot.
I was asked to put on extra layer of clothes I had to wear a mask and a face shield too. I had alcohol on hand and my cellphone in case I needed to contact H.
When we got to the operating room at 4pm, almost everyone looked like astronauts with their PPEs. Because Nia was deemed covid positive, they had to wear PPEs (which were later all charged to us.) Our surgeon, Dr. Charlotte Chiong greeted us. Too bad we were all wearing masks, I couldn't see the faces of her team. I was asked to put Nia to the bed while they administer the anesthesia to her IV. I sa goodbye to her, said I love her so much. I told her to be brave. And I told her I'll see her later. That was the time I was ushered out.
While walking away and walking to the waiting room, tears just started falling. No parent would want their kids to see in a room like that. Everything that have happened, since receiving the news from the nursery that she failed her hearing test up to the point just started crawling back. I sat on the waiting room, crying in my mask. I kept reminding myself that everything will be okay. Trust her doctors, trust the process. Most importantly, trust God. He has never failed you. I got my phone, texted my husband what was happening and told him I didn't have my hanky and my mask was full of tears and snot.
Our audiologist, Alyssa, was inside the OR too. Prior to that day, she already promised me to keep me posted what was happening inside the room. I was happy when she messaged me.
4:40pm drilling
5:40pm insertion of implant
7:00pm telemetry and checking of electrodes
7:15pm closing
8:00pm recovery
During this time, I was just in the waiting room, praying. I didn't want to go back to the room because I was afraid they might call or need me and I wasn't there. I asked my husband to bring me down my hanky (because I didn't want to touch my face with my bare hands), my pump (I had to pump breastmilk at one point), headphones so I can watch movies and get my mind out of what's happening. He brought down some water for me to drink too because I didn't get to eat dinner anymore.
At 8:00pm, I was told to get ready because she was going to be wheeled in the recovery room and I was to meet her there. I was so excited.
At 8:15pm, I finally saw my beautiful angel. Have I mentioned that her name, Cali, means most beautiful? She was still groggy when I saw her. Dr Chiong was there, as well as Alyssa. They mentioned that there was pressure and gushers because of her LVAS that is why it took longer than expected. The gushers were pushing the electrodes back. Indeed, it was later. Normally, they said the procedure finishes after 3 hours but Nia was longer and it was starting to make me panic in the waiting room.
They started to wake her and when she saw me, she started crying again. I held her in my arms. She couldn't lift her head. The bandage was so big and heavy, she couldn't balance it. She looked weak but she was still strong. I just kept praying and thanking God. I knew she was not out of the woods yet, but seeing her respond to me and cling to me, seeing her alive was such a relief.
We stayed in the recovery room while they monitor her. When she starts feeling like something is on her or somebody else is touching her, she starts crying again. She was so tired but still my little fighter.
Finally at 9:30pm, we were back in our room. Nia was asleep when her dad saw her. I jumped in the shower, hugged my husband, ate some food and prayed until we fell asleep.
We did it. Nia did it.
For Nia's #calears journey, click here. And for continuous donations for Nia's therapy and other medical expenses, you may refer to her story here. Thank you so much.
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