Viviana's Gift: Join Us in Remembering Viviana's Brave Fight

This TAX-DEDUCTABLE donation will be made in Vivana's name to Primary Children's Hospital CICU in Salt Lake City in memory and honor of our beautiful Viviana...we love you forever and ever, Ptichka. Viviana Josephine was born on Jan 15th at 6lbs 2 oz. with an extremely rare congenital heart defect (CHD) called Truncus Arteriosus.

Viviana’s Story: We found out that we were going to have another baby on Mother's Day 2024. Both of us were very happy to have another child to add to our growing family, a dream come true. We have struggled to have children over the last 5 years, and luckily despite those struggles, we have our daughter Chloe (2), who is the sweetest, kindest child you could ever ask to have.

Our hope for Vivi was to be born at home, in a natural way without medications, and in a comfortable setting. Her older sister Chloe was born similarly, and we loved the experience as a whole.

Unfortunately, that was not what the Universe had in store for us.

During our week 20 anatomy scan, we discovered we were having another girl. The happiness we were feeling about having a little sister for Chloe, and another sweet girl just made us oh so very happy. I remember recording the entire appointment and sending a video to the family telling them to expect another baby girl. We went home and started making plans. We decided to name her Viviana Josephine, after two of my grandmothers.

Then we got THE CALL.

The clinic called and asked us to come back for another scan. They saw something, probably nothing, but something that needed to be done just to make sure everything was ok.

They sent us to a specialized heart doctor to take an in-depth look at everything, and when he came into the room with the result, his face was very somber and his eyes apologetic.

He started to speak and began with "I am so, so sorry....". Everything after that was a blur.

He told us that our daughter likely had Truncus Arteriosus. Nobody knows how or why, but it is what we have here to contend with: https://www.yalemedicine.org/conditions/truncus-arteriosus

Truncus Arteriosus is a rare condition. About 250 babies are born in the United States each year with this birth defect.

Fewer than 1% of all congenital (present at birth) heart defects are truncus arteriosus. It is quickly fatal if it is untreated.

They see 2-3 of these cases per year at Primary Children's Hospital. This year they got to see our daughter as one of the few. They do other surgeries throughout the year that are parts of this surgery, so they have practice with most of the procedure, but it's still nerve-wracking to know it is impending, and then to go through recovery.

We talked about things and decided that no matter what, we would do everything within our power to save our daughter and to give her the best possible life we could. We knew that we would be signing up for a lifelong commitment to care for her, but that was not even a consideration when it came to taking care of our baby.

The next few months that followed were difficult, like knowing there was a ticking time bomb that would go off, and that when it did finally go off, even harder challenges were going to be faced. It made things difficult in many ways, one of them was taking something that would be such a happy experience and becoming one of uncertainty and dread.

As long as she stayed inside of the womb, she was safe. Once out, all bets were off.

Our family relocated to SLC in late December during Christmas break in order to be near the facility to give birth. We made the move and started going to weekly appointments. Her due date was Jan 21.

Her Non-Stress tests were coming back ok, so we tried to let her stay in the womb as long as possible until Jan 14th, during our appointment they discovered hydrops fetalis in the beginning stages of forming hydrops fetalis. They told us that it was just starting and that we needed to induce labor today.

We dropped everything and got checked into the hospital. Over the next 18 hours of labor, it was surreal. We both knew the inevitable was coming and nothing we could do could stop it or protect her. It was the worst feeling in the world knowing that I was helpless. After about an hour of hard contractions, she was born.

Viviana Josephine was born on Jan 15th at 5:11 a.m.

When she was delivered, I saw them pull her the rest of the way out, and then she cried a short cry. They then whisked her away to intubate her, as she was deemed to have a critical airway and needed immediate help. Viviana only cried once in her entire life before she was intubated.

That was the first and last time I ever heard my daughter's voice.

After that, they got Ksenia comfortable and cleaned up. We were unable to hold her as she had already been taken to NICU. They called me back to the NICU to see Vivi an hour later, and I came immediately to her.

She was already sedated with a tube in her nose. Even seeing that, she was so beautiful, with long hair and all of the curls of her dada. I held her hand and kissed her and told her how much we loved her and how much we wanted to try and help her live. I could only stay a few minutes before they had me leave.

They then transferred her to the CICU (Cardiac Intensive Care Unit), and we immediately went to visit her. It was very hard to not be able to hold her and comfort her. The next day they kept her sedated while they did an MRI and other tests to see where things were at before surgery. They then informed us that they felt the need to get her surgery done sooner rather than later was a factor. They wanted to operate on Friday, which meant Vivi would be barely 2 days old.

We asked for as many prayers as we could ask for, from all friends and family, strangers..it didn't matter who as long as they were praying for Vivi. On the 17th of February, they performed surgery to correct the Truncus.

They started around 8 am and told us it would likely be 6-8 hours. Imagine our surprise when we got a call around 1230 saying that the procedure was done, things looked great, and the surgeon would meet us in 40 minutes in the OR waiting room. We went to the waiting room and waited…and waited. After two hours I knew something was not right. After three I was certain. After four I was doing everything I could to stay calm.

After six hours the surgeon came to speak with us. He told us that when they removed her from the bypass they had issues with resuscitation. They ended up having to put her on a machine called an ECMO machine which was supposed to just help with her blood oxygenation originally.

The first 24 and 48 hours after her surgery were really scary for us, we almost lost her a couple of times because she had problems with her blood vessels dilating and holding fluid. In order for them to help her maintain her blood pressure they had to give her a lot of different medication and fluids, but because of that she swelled up to almost twice her size.

I decided to stay at the hospital every night after that until she was out of critical. I would read her stories and sing songs and hold her hand all day and night to try and help however I could.

They ended up having to place her on dialysis in order to remove the fluids from her body. While helpful in some ways, it definitely made things a lot scarier seeing so many machines in the room and so many wires and so many tubes attached to my little 6 lb baby girl.

By then I had posted about this on Facebook to my friends and a lot of people started praying for Viviana. It was a tender mercy and kindness to see so many people coming together to pray for our sweet daughter.

The next couple of days after that were a little less scary as her vitals started normalizing and they were removing her from many of the medications they were giving her to maintain blood pressure as well as had most of the fluid removed.

She started opening her eyes and looking at us. From time to time you can see that she was uncomfortable and she would try to cry but no sound would come out due to the intubation. It was really hard to see her struggling like that, wanting to tell us that she was uncomfortable but she had no voice.

We did everything we could to help her stay calm and comfortable, talking to her when she was awake and helping her to stay asleep instead of being sedated.

They came to us that next Wednesday, 5 days after her open heart surgery, and said that after running more tests and scans, day felt like there was some sort of restriction near her pulmonary artery that was causing her blood oxygenation levels not to be where they needed to be. They wanted to go in and just take a look while in the operating room and potentially fix it if they saw a problem.

On Thursday, they went into the operating room to take a look, and they ended up performing surgery to repair her pulmonary artery. They did this in hopes of fixing the oxygenation issue but unfortunately, it set us back because when they took her off of bypass again she had the same resuscitation issues.

Because of those resuscitation issues, she had to be given more fluids and more medication to maintain her blood pressure and she was swollen again like she was before.

Throughout all of this, our sweet little Viviana was still fighting, she would still open her eyes and look at us sweetly, and she would still hold our hands and fingers constantly even when asleep.

We went through a couple more days of the same scary dance of blood pressure medications and fluids, and removal. Eventually, she was able to get most of the fluid off and off of most of the blood pressure meds again.

At this point, they tried to remove her from the ECMO in a turn-down test and it failed, her blood oxygenation levels dropped as soon as they got down to the machine only providing 40% support. They waited another day and tried the turn-down test again, then waited another day and tried it one more time.

At that point, I could tell that they were all frustrated and concerned, and I could tell that they just weren't sure what to do.

They sent us to the cath lab that Friday the 28th, to try to shed some light on the situation by doing a contrast test to see where the oxygenated blood and the non-oxygenated blood went inside of her body and organs.

During that time they also performed a bronchoscopy which ended up being a little hard on her. We got no answers from the cath lab tests and because of the bronchoscopy and the washout that they did of her chest to make sure there were no clots, it put us back into the same place of blood pressure medications and fluids and fluid retention.

At this point, our sweet daughter had already been through three procedures, two of them open heart procedures, and all the while her chest had remained open.

After coming back with the test results from the cath lab they just couldn't understand why her blood wasn’t oxygenating correctly. I could tell that they were getting more and more frustrated, and this last time in the OR really took a toll on our sweet daughter. It took her more days to bounce back from these tests and she started getting jaundiced from her liver being injured.

Her kidneys had shut down mostly at this point because of the dialysis machine but her liver was struggling.

They moved us to a different room because we asked them for a similar room with a little bit more natural sunlight, and I called the bishop to come to baptize our daughter into the Orthodox Christian faith. God bless you, Father Paul, from Saints Peter and Paul Antiochian Orthodox Church in Salt Lake City.

We went a couple more days trying to get her liver sorted out along with her blood pressure medications, they had to remove a clot but nothing that seemed too scary but everybody was more and more concerned because I knew they needed to get her off of the ECMO machine but they couldn't.

We got to a point where I thought things started looking better even though her liver was still a little iffy.

On the night of the 9th of February, the nurses out of the blue asked me if I wanted to half-hold Viviana. They had never allowed us this option or even given us the option until now, as there was some potential danger involved. It had to be in a very controlled environment with a lot of people monitoring in case anything happened.

I jumped at the chance and immediately took off my shirt so I could have my skin touching hers.

They lifted her gently and placed her in my arms. She looked at me and we just locked eyes for close to 2 hours as I just talked to her and held her hand and kissed her face.

I called Ksenia and told her that they were letting us do this right now so she rushed to the hospital to come and hold Viviana.

Viviana melted in my arms as soon as I was holding her you could tell that this was the first time that she was relaxed without medication or anything and I just felt so happy that I could give her some peace. I just hope that she felt my love because it was so big and bright at that moment.

Ksenia arrived and I moved so she could have some time to hold her. She held her for 2 hours until the nurses needed to perform a procedure. Vivi looked up at her so sweetly as Ksenia held her in her arms.

The next day her liver numbers were up higher and I had a feeling of dread building within me. I could tell, or maybe just feel that something was going to happen.

The next day I called Father Elias from the Saint Anna Greek Orthodox Church in Salt Lake City. He gave her a blessing and stayed with us for a while.

A few times during that day my mother and I tried to keep Viviana awake so her blood pressure would stay a little higher and they wouldn't have to give her so many blood pressure medications. They were destroying her liver and I was trying to do anything I could to help my sweet Vivi.

I slept by her bedside that night after trying to stay up all night to be with her. The next morning I could feel that something wasn't quite right and I stayed with her throughout the day.

The music therapist came by and I asked them to please sing some songs for her.

Before they started she had just woke up and she looked up at me so sweetly and we locked eyes for about 10 to 15 minutes. I was holding her hand and she was just looking at me.

Music Therapy (Elena) started singing songs and I sang along with them to her. We sang Over the Rainbow and You Are My Sunshine and Baby Beluga. I sang three little birds to her, and then they departed.

The doctors had requested to have a meeting with me and Ksenia later that afternoon to talk about where we were with things and what path we had forward.

I already had a feeling about what things they wanted to discuss and they brought up palliative care and just stated that they were running out of options and we needed to make some choices. It was a very emotional discussion, after which we went back to Viviana's bedside.

As soon as I touched her, I knew something was wrong. I tried to open his eyes and looked into them but she couldn't focus or track my face. I told them nurses and they said she's just sedated. I told them no, that's not it.

I spent close to 20 hours a day every day for 26 days next to her bedside, and I knew my daughter. I could feel her. I would call her hospital room in the middle of the night when I would awaken to something, only to find out that there was an issue at that moment.

We were connected. I could feel her.

I told them to run the test right now. Something is NOT RIGHT. They saw how much I meant it and they told me okay they would. They started running tests and my mother and I stayed with her until the early hours of the 11th.

At 4 am, her liver numbers came back, and they were catastrophic. Her organs were all failing, and it was time.

Our sweet Ptichka made the choice for us. Instead of us having to agonize over what to do, she decided for us.

We called Father Elias and called Music Therapy to come and sing for her. They made the decision to let us fully hold her since the risks didn't matter any longer.

We both took turns holding her in our arms while we sang to her for a while. The nurses, doctors, and everyone there were crying and emotional. Father Elias blessed her with a final blessing, and we just tried to give her all the love we could.

Eventually, her pulse started to drop and we could feel her slipping away. We told her how much we loved her and wanted her to stay, but if she needed to go we would be ok.

After a while, they then removed the ventilator and let her heartbeat on its own and breathe on her own until we finally shut off ECMO. We heard her last breath and her heart stopped beating in my arms.

I held Vivi for an hour afterward. I couldn't bear to let her go.

Eventually, I lifted her up and placed her on her bed. I placed her stuffed animals around her and just held her there for a while. I gave her a kiss and told her how proud I was of her and how much I loved her…how her fight was over and she could rest. I told her I would take her home now to have peace.

Viviana was laid to rest under a willow tree on February 25th, 2025.

Viviana spent her entire life in the CICU at Primary Children's Hospital. She never got to be held fully, she never had breast milk, and she weighed the same as the day she was born.

We met a lot of nurses, doctors, staff, and volunteers there who were touched by Viviana. Many of them worked as hard as they could and then some to try and save her life

For that, we are forever grateful to them.

In the short 27 days of Viviana's life, she inspired tens of thousands of people to pray for her across many nations in this world. People at churches and temples across all faiths and nationalities.

A lot of people have commented or sent messages asking how they can help, or what they can do to support our family.

I have thought about it quite a bit and I think the best way to honor and support our daughter and family at this time is to donate a lump sum to Primary Children's Hospital CICU unit in her name.

They have a small placard outside of the unit entrance with the names of some people who have donated and made things possible there and I think it would be a great thing to honor her by putting her name there too.

By placing it there, all of the other patients, doctors, and nurses will be reminded of our sweet Ptichka and her brief but bright life.

Thank you all for your love, support, and prayers. If hearing Viviana's story has moved you, please SHARE this story with others and consider helping us reach our donation goal.

By supporting this cause, you help keep Viviana's name alive long after we are gone and help other children have a chance and life that Viviana was not able to live.

May God bless you all.

https://www.cloverdalefuneralhome.com/tributes/Viviana-TaggartNocito