Thursday, May 31, 2012

Welcome baby sister Christina Maria & Theo's Immunotherapy #4


Christina Maria born May 13, 2012
2 lbs, 5 oz. and 14.5 inches long
On Mother's Day the Yianas Family welcomed their newest addition, Christina Maria, born 3 months too soon.

...and, Theo completes his 4th round of Immunotherapy

"Wow." That's what a lot of people said as they heard the news that the Yianas family has a new addition. Some folks only recently found out that Eleni and Kosta were expecting a baby, and there were even a few out there that didn't even know Eleni was pregnant. So when news that Eleni was in the hospital due to complications with her pregnancy at only 27 weeks, many people including the Yianases themselves wondered how much more worry can this family take on?

On Tuesday afternoon, May 8th, Eleni called her OB from the National Restaurant Association Show being held at McCormick Place. She was not feeling well and needed to get to her doctor asap. It would take her over an hour to get from downtown to her doctor's office in Hoffman Estates, so her OB directed her to go straight to the hospital for an ultrasound. When she arrived at St. Alexius, test showed that the baby was fine, but there was something very wrong. She was having contractions and hemorrhaging, and no one knew why. The baby was only 27 weeks gestationally, and Eleni was at real risk of going into premature labor. "We need to keep that baby in as long as possible," said Dr. Ray as she ordered tests and mandated that Eleni stay on bed rest until the baby is born. Eleni argued that it was impossible to do because Theofanis was scheduled for treatment at Comer in mid May, and she needed to be there for him. And what about Deme and Sophia? The girls had their dance recital the next week. How could she allow Kosta to do everything on his own? Her argument was moot. Eleni was going nowhere until the baby was born, and at that moment, no one knew when that day would be.

Over the next several days, Kosta and the kids were by her side as much as they could be outside of school and activities. The kids would cuddle in the hospital bed with her. They missed her, and they worried about her and their unborn sibling, too. There was a lot of worrying going on. And for the week that Eleni spent in the hospital, Kosta, as always, took care of everything and reassured his wife. And so did her dear family and friends who sat by her side at the hospital.

Eleni's OB, high risk doctors and neonatologists monitored the baby closely. They gave Eleni medicine to stop the contractions, medicine to help with the baby's lung and brain development, and antibiotics against infection.They then waited for signs of improvement. But instead, there was concern that amniotic fluid was leaking and the placenta started to detatch. By Saturday morning, there was confirmation that the amniotic sac had ruptured. And, at 1:30 am on Sunday morning, on Mother's Day, Eleni called Kosta to come to the hospital because she started to have painful contractions. This time, the doctors would not stop them. She was going into labor.

Throughout the night, Eleni didn't advise the nurses of her contractions, though they knew according to the monitors that she was having them every 3-5 minutes. At 7 am, Eleni finally asked for some pain medicine. That's when the staff started to prepare. Within about an hour, Eleni started to dilate from 0 to 5 cm. That's when her doctor was called to come to the hospital, that's when more medicine was hung for the baby's neurological system, and that's when the staff quickly moved her into a labor and delivery room, grabbing the Cord Blood Stem Cell Collection kit on their way out. Needless to say, Eleni and Kosta freaked out. It was too soon to have the baby.

The OB arrived and announced that Eleni was dilated to 10 cm and had to start pushing with the next contraction. No epidural. No time. The neonatal intensive care team was set up in the corner of the room...waiting. With two pushes, a baby girl was born at 10:05 am. Kosta and Eleni grabbed a glimpse of their tiny precious daughter, who did not cry or make a sound and watched while she was handed off to the NICU doctor and nurses to be taken care of. This would be the team that would take care of her for the next three months. 

Mommy holding Christina,
3 days old.
"What's her name?" they asked. Christina Maria, named after Christ our Lord and his mother the Virgin Mary.
Christina Maria weighed in at 2 pounds, 5 ounces and was 14.5 inches long. She was put on a ventilator to help her breathing but was strong enough to breath room air (with assistance) the same day she was born. She is a fighter, just like her brother!

So, the Yianas family now has an overlapping journey as
their newborn preemie, baby Christina, battles to grow,
reach milestones, and get stronger each and every day.
And the Yianas family has two hospitals and two medical care teams that they are depending on to bring their two children to full health.


CHRISTINA'S JOURNEY
Proud big brother Theo,
big sister Deme and big sister Sophia
with Christina...posing for their
first picture together!
The NICU doctors and nurses describe Christina as strong, fiesty, and cute. When she opens her large eyes and looks straight at them, their hearts melt. And when her family surrounds her, talks to and sings to her, her eyes stay wide open and she follows the sound of their voices. She likes to be nestled on mommy's chest for kangaroo care time and be swaddled and held by daddy. She wears a tiny diaper, is tasting her mommy's milk, is learning how to suck her pacifier, and once in awhile you'll hear her cry, too. She's doing things that a baby should do. Which is all good news.

Though born at slightly over two pounds, Christina has a long way to go until she's developed enough, strong enough and old enough to go home to her family. Her first week of life was an extremely critical one, where her organs were closely monitored. Her lung and brain development was critical and making sure her other organs were functioning properly were the focus of the week. Scans of her brain came back with good results. Her stomach and digestive system were functioning properly. And her lung function was as expected for a preemie. She progressed from a ventilator to a c-pap (mask as seen in photos) to a canula (tubes in her nostrils). She has a lot of tubes and wires connected to her for monitoring. She has a pic line that's been placed in her arm (similar to Theofanis' central line) for IV fluids, nutrition and medication.

There were two concerns that the doctors have been monitoring. Christina was born with a very, very high White Blood Cell count. A normal reading is at about 11. (This past year, the Yianases were used to seeing Theo's wbc's between 0 and 3 and would celebrate anything over 5). Well, Christina's wbc was 60 and days after she was born, climbed up into the 80's. The staff contacted a hematologist and additional tests were ordered. Knowing what cancer has done to this family, the doctors didn't waste any time trying to figure out what was going on with this tiny baby. The possibilities ranged from a condition where extremely high white cell counts occur but diminish to normal levels within the first couple weeks of life to the possibility of leukemia. Thankfully, the test and slide smear that measured the protein levels on the individual white cell came back ruling out leukemia. And Christina's wbc started to taper down with each passing day. The second concern that's being monitored now is a heart murmur. An echocardiogram detected a moderate to large PDA opening which was causing the murmur. This valve is open and fuses shut after a full-term baby is born. For a preemie, it takes a while to close or needs assistance to close. Christina was given medicine to treat the open PDA. The first dose showed good results, with the PDA being slightly open. The cardiologist decided to wait and see if it would close on it's own, but after a few days, the heart murmur appeared again and the PDA had gotten larger. A second dose of medicine was administered and an echo will be done again to see how effective it was. Tests are pending.

As you can imagine, Christina's brother and sisters are very excited to have a new baby. Though, they are very emotional during this critical time. They instantly fell in love with her and instantly became protective of her. They drew pictures to decorate her incubator in the NICU. Although they cannot hold her in their arms quite yet, they hold on to her hands, hoping her tiny fingers will sqeeze them. They sing and read books to her, too. They smile and laugh when they see her, but then they also cry because they want her home. But big brother Theo appears to be the most emotional one of them all. "I know she's having a tough time," he says. Theo recognizes the monitors, the leads, the tubes, the IV bags, and sympathizes with his baby sister. He's said, "I wish it were me in that bed instead of her." And as Eleni and Kosta try to explain that the NICU is the best place for her to be and that she's being taken good care of, they realized that they needed to tell their son that Christina is not going through what he's been going through. When they told Theo that Christina is not getting the same medicines that he got, he stated, "So, she's not throwing up?" No, sweetheart, Christina's medicine is helping her grow.

Christina's original due date was August 7th. That day will now be called her "corrected birthday" and will most likely be the time when she'll be able to go home to her family. Until then, she's being taken good care of by a fantastic neonatal intensive care team at St. Alexius. The nurses there are beyond fantastic, and one of Christina's nurses, Sandy, is a fellow parishoner at their beloved church, St. Demetrios. Her son Jimmy, serves in the altar with Theofanis! 

Daddy holding Christina, 1 week old.
THE SPOT
THEOFANIS' 4TH ROUND OF IMMUNOTHERAPY
On Sunday, May 20th, Daddy, Theofanis, Demetra and Sophia went to church, where Theofanis served in the Altar. Mommy went to the hospital to be with Christina. After church, they all gathered at St. Alexius to read books and sing to Christina. Then they left her to sleep (and grow) and went home to pack for Theofanis' hospital stay that would begin that evening. Before heading to Comer, the family stopped by St. Alexius to visit with Christina once again. At 10:30 pm, Eleni, Demetra and Sophia dropped off Kosta and Theofanis at the University of Chicago, where Theo would be getting his fourth round of Ch14.18 antibodies, which would be started the next day, which was also the holy feast day of Saints Constantine and Helen.

So on Monday, while Eleni was at St. Alexius with Christina, Kosta was with Theofanis at Comer Children's Hospital. The plan for the week was that Eleni would be with Christina and Kosta would be with Theo. This decision was a tough one to make because both parents wanted to be able to stay with both kids. Theo was used to having both mom and dad with him throughout his hospitalization weeks. Though, he understood that mommy needed to be with his newborn sister, he was still disappointed. Deme and Sophia were at school...and an army of friends and family were helping out with pick ups, lunches, dinners, play dates, errands, and overnight visits. (The help that the Yianas family received during this week was incredible. The family could not have gotten through the week without everyone's help, so thank you to all who were there for them!)

On Monday morning, Theofanis' antibodies were hung. Once again, Eleni, Kosta and Dr. Cohn agreed that Theo should move forward with 1/2 dose of Ch14.18, similar to round #3 which he tolerated well. The Comer team, of course, would keep a close eye on Theo, looking for any adverse side effects. The first day went well, until the evening when Kosta called Eleni and told her that Theo said he thought he was seeing things. He claimed he saw Eleni, then Deme and then saw things on the walls of his hospital room. Immediately, Kosta and Eleni became worried and concerned that he was starting to have hallucinations, similar to when he had the severe reactions to the drugs during round #2. Kosta called Dr. Cohn who had already left the hospital for the evening and they agreed to stop the infusion right away. Dr. Cunningham then arrived to give Theo a neurological exam. It was decided that they would wait until morning to decide if they would start up the antibody again or if Theo and Kosta should pack up and go home.

It was a difficult night of worry. The next morning, Theo woke up, looked and felt fine. Dr. Cohn arrived and gave him an extensive exam. He appeared to be at baseline. He appeared ok. So, Kosta and Eleni (over the phone) agreed with Dr. Cohn that they would restart the infusion and if an event reoccurred they would stop treatment altogether. With that decision, the Ch14.18 was ordered, hung and started. And Theofanis seemed to tolerate it well for the remainder of the week. No hallucinations, no fever, minimal itching and discomfort. The infusion continued on and finished on Thursday night. He was discharged on Friday morning, with round #4 done, and one last round of antibodies to go in June!

Daddy kept Theo busy in the hospital throughout the week. A little homework, a little Wii, and an intense Star Wars Lego project kept him occupied. He would Facetime with Deme and Sophia, too. But by Wednesday, the family's separation was getting tough. So, Eleni made arrangements for the girls, and then made a surprise visit to her son. Theo was really happy to see his mom and spent several hours just cuddled up with her in his hospital bed at Comer.

WITH FAITH, LOVE AND PRAYER,
HE WILL WIN!

Christina Maria, 2 weeks old.
We know that Theofanis is passionate about winning, and that's exactly what he's been doing along every step of his cancer treatment. And he hasn't done it alone. It's with God and the love, prayers and support of so many people from around this entire world that he and his family have been able to find the strength and courage to fight and move forward. And it's with the same faith, love and prayer that the tiniest member of the Yianas family will also win her battle. So, please expand your prayers to include Christina Maria. May God protect her now and always. May God grant her the strength to grow so she can go home to her family soon. 

1 comment:

  1. Congrats on the new addition! She is a fighter just like the rest of you and Theo. It seems like she is progressing well from the news I hear.

    Theo looks so good in the pictures! That makes me so happy!!!

    ReplyDelete