Rozhya's Heart Surgery


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Rozhya
Age: 
0
From: 
northern Iraq

Reuniting with Rozhya

Posted on Thu, 12/26/2013 - 14:30 by Jesse Tilman

During the last few weeks, I’ve been blessed with the opportunity to travel through Kurdistan on Shevet-related business. This morning I dropped in on Rozhya's father at his parts store in the mechanics area outside of their city. He and his son Diari were there and welcomed us warmly.

The father is doing well at his store, and he invited us to come see Rozhya. 

This evening we went to their house and waited excitedly for Rozhya to make her appearance. As we sat, we snacked on fruit and talked about how their winter was going. Soon Rozhya's uncle entered with one of his sons. He asked after our day, and we settled down to some more food and small talk. 

Then Rozhya came in with her mother. We soon saw how well she was doing! When I last saw her, she was weak, and we were working hard to help her exercise and recover from the surgery enough to return home. Now I smiled as I saw her moving around energetically while lying on her back. She could roll from side to side, joyfully kick her feet out, and hold her knees up to her chest.

Her uncle held her up, and she stood with his support.

Her mother looked on approvingly from the side as he helped Rozhya walk around. 

Rozhya gave us big smiles as she lay on the soft carpet during our evening at their house. Now and then her older sister would come by and tickle her belly and get her to wave her arms around and show off her coordination. We just smiled and talked about how well she is doing. She is definitely bigger and healthier then when we saw her last. 

Her family brought out Nescafe and dates and chocolate, treating us with classic Kurdish warmth and hospitality. We gave them our thanks and well-wishes and prayers for the future. As we said goodbyes, I returned a last smile to Rozhya and shook her father’s hand. We have high hopes for her future.

A Visit With Rozhya at Her Home

Posted on Sun, 10/06/2013 - 11:03 by Paul and Wendy Tilman

We went to see little Rozhya this past Wednesday. We had a really fun time because Rozhya was looking so much better! The family said she has been eating well now. Recently, they took her to a doctor and he said everything was fine. So she is on the road to good health and gaining weight! As we visited, she was waving her arms and legs by herself and moving her head from side to side. At one point she almost turned over by herself. She also seems to be alert and ready to smile.

Her mother said she misses Kristina and has tried to call her three times but has not been successful. We told her she could use our satellite phone to call her sometime. When we told her we would be visiting Shevet Achim in eleven days, Rozhya’s mother said, "Oh, take me with you!" What a change! That was the last thing she wanted to do before but now she can't stop talking about how everyone at Shevet such good care of her and Rozhya.

Thank you for changing this family's life and outlook on the world around them. We will be visiting this family more. They are so thankful!

Persistence Pays Off

Posted on Sun, 09/08/2013 - 23:20 by Ashley Baugh

There were many tears of joy shed over the past twelve hours, as we honored what God has done for little Rozyha’s physical heart, the way that she has impacted and touched our hearts, and the ways that even her own mother’s heart was strengthened. The farewell celebration last night was double everything, because we were preparing to send home two families in one night! It was a full house in the Mother’s quarters, as we were utilizing one of the largest volunteer staffs yet, and celebrating both Rozyha and Darbaz’s new hearts, and their roads to recovery. 

As usual, we prepared some snacks and tea, and gathered for songs of celebration and stories of our experiences getting to know the children and their mothers. Nine-year-old Darbaz was first, followed by ten-month-old Rozyha.

With Rozyha nestled in my arms the entire first part of the party, I could not help but to continue kissing her half shaved (yet to grow back from surgery) head, while thanking God for keeping her here this last week to gain weight and learn a routine of developmental exercises. Rocking her, I prayed thankful blessings over her still delicate little body and life in northern Iraq.

As we began to share our stories of our interactions with Rozyha, Jesse and Kristina translated while her mother echoed choruses of, “Zor supas” (many great thanks) over and over. I felt myself getting choked up, but I did not want that to keep me from sharing. It did not take long before I was crying in front of the whole group. But because of the many tears as I have seen her mother shed over the past few weeks, I felt I was in good company. I have grown to love them both, and am thankful to have been a part of their journey. 

I arrived to Shevet Achim when Rozyha was recovering from her surgery. I met her for the first time when she came home from the hospital. Her little body was so fragile and weak. I saw her in the baby seat on the way home but was afraid to touch or pick her up. It was amazing to hear that she was ten-months-old, because she was so tiny and weighed only about five and a half kilograms, or about 12 pounds. She could not lift her head, or turn to the left or right. Her cry was so faint that you could barely hear a sound, even though her face showed a full on wail. When I finally picked her up, still uncomfortable and worried I would hurt her, I sat mostly still with a small rattle and looked into her dark eyes. She started to scrunch her face and force out a little cry every time you changed positions. I thought to myself, “Surely this is not the end result, or state she will return home in?” 

It was only a matter of days before she was asked to come back to the hospital for a checkup. For her eight months of life before surgery, she had nothing but breast milk, and for three weeks after surgery, she had been intubated with a feeding tube only. There appears to be some unconfirmed neurological damage due to an extended lack of oxygen pre-surgery. It seemed as though she had lost some of her motor skills and was not sure how to eat, and was not strong enough to suck or swallow, even from the breast. She did not appear to be eating enough. While most ten-month-olds are being introduced to solid and/or puréed foods, and sitting and crawling around, Rozhya was lying flat on her back, as she had for weeks, tightening up her lips at most attempts to feed her. Other times she would just swirl milk around in her mouth only to gag, or have it run out of the side of her mouth.

After a long hard day at the hospital checkup, Rozyha was re-admitted to the hospital. The doctors and nurses were gravely concerned that without an extra week or maybe two of tube feedings in addition to breast milk, formula, baby food, and therapeutic exercise for her mouth and throat, she would most likely die of malnutrition in northern Iraq. 

Thank God she was able to stay! What a difference the last eleven days have made! We worked hard to pray and encourage her mother, while practicing and re-emphasizing the exercises over and over with her. Slowly, her mother started to do the exercises with Rozhya more regularly, and Rozhya’s weight climbed. Upon her arrival to the Shevet House earlier this week, I had her in my lap and went to reach for something, somewhat panicked when I realized that I was not supporting her head with my hand. But when I looked back, Rozyha was sitting straight up looking at me on her own! I was shocked and ecstatic to see such a dramatic change in such a short time! She can fully turn her head/neck left to right, and roll half way over when on her side. She can kick her legs and grabs for things in front of her. Her teeth are coming in, and she is now taking small spoons of pudding, baby food, and chewing/sucking on fingers and teething rings. She is still hesitant with the food at times, especially at night, but her bottle feeding skills have improved massively. We are hoping that with the use of the toys and exercises we have given her mother, she can continue to work with Rozhya daily at home, and that Rozhya will continue to increase in strength, and improve her eating and motor skills. 

At her farewell party, Rozyha and her mother were presented with toys, stuffed animals, a new teething ring, a hand-made quilt and pillow, a beautiful head scarf and lotion for her mother, and Kurdish bibles. They were very appreciative of the gifts, words of affection, encouragement and blessings. We ended the night by watching both of the children’s slideshows of pictures that chronicled their experience here in Israel from start to finish.

We sent them off bright and early this morning after prayers and hugs and kisses were offered. I was only here as a volunteer for a short time with Shevet, but feel so blessed and thankful to have been a part of their journey. It seems fitting that we would share this day, as it was both our final day at Shevet Achim.

As always, it is bitter sweet to watch a family get into the Shevet van for the last time, but we are thrilled to see the mountains these kids overcome, and so happy that they can now go be reunited with their families. We pray that they are filled with new hope of a long and healthy life. We also hope they will remember the love and care they received here and know they have been touched by the love of God. This home is truly a gift to all who encounter it.

Rozhya Returns to Jerusalem

Posted on Mon, 09/02/2013 - 23:24 by Jesse Tilman

After marathons comes the celebration and relief of the finish line. For Rozhya’s mother, the last weeks have been days of endurance. Braving a foreign hospital and fighting to hold onto hope for her daughter and strength for herself have etched new reserves of force in this mother’s spirit. She is not the same woman who came here just a month and a half ago.

We received the call early this morning from the hospital informing us that Rozhya had been cleared to return to Jerusalem. Afterwards, I called Rozhya’s mother to let her know that we would be there this afternoon to pick them up. Through the statements of the doctors, the persuasion of the nurses and our own conversations, she has stayed in the hospital for the last week despite her repeated statements that she would be leaving soon. Rozhya has steadily gained weight, though in a painfully slow manner.

As Rozhya’s mother battles her own needs in favor of her daughter's, we are seeing strength being built in this brave mother. She is very caring for Rozhya and has been putting into practice all the teachings she's learned over the past weeks. She has been exercising her daughter throughout the day and handling her in ways that will facilitate growth, such as putting her on her stomach more often and increased feeding.

When we arrived at the hospital to take her back to Jerusalem, she found us as we were talking with a doctor. We exchanged pleasantries and she immediately asked me with a strained face if all was on track for her to return to Jerusalem with us. I assured her it was and that we just had to talk with her nurses briefly. Rozhya is to return on Wednesday for another echo and check-up. After receiving their instructions for Rozhya's medicines and strong reminders for her to eat as much as possible, we were ready and walked outside. Rozhya's mother joyfully set her daughter in the car seat and smiled grandly as she set her own seat belt. After thanking God, we began the journey into the hills.

Rozhya Gaining Weight

Posted on Sun, 09/01/2013 - 22:00 by Ashley Baugh

The hospital visit with Rozyha today was great!  When I arrived the nurses told me that her weight was continuing to climb, her echo went well, aside from a small amount of fluid on the lungs; which did not appear to be a problem. She has had a series of blood tests done over the last few days due to suspicion of an infection around the heart called endocarditis. We are grateful to God that so far all the blood tests have come back negative.  

I found Rozyha and her mother sitting under a tree in a large courtyard, she was resting on a sheet on her mother’s legs, and squinting from the bright sunlight. Her sweet little face is finally starting to fill out a bit, and she smiled as she rocked back and forth on her mother’s lap. After a short time we walked to her room, where I was able to go through several exercises with her, and watch a bottle feeding and a few attempts to eat some pudding. As frustrating as it can be try to bottle feed for an hour and only get one or two ounces down, she is making progress every day. All of the volunteers that visit them in the hospital have been diligently trying to model and practice a list of physical therapy and occupational therapy exercises with Rozyha. It is crucial that her mother participates, and continues the exercises daily to increase Rozhya’s brain development and motor skills. Rozyha is getting used to the bottle a little more each day, and mimicking the lip movements of sucking and chewing for her is helping her to catch on.  

We are focusing on lots of tummy time, and noise making toys for eye contact, head and neck movement/strength, and encouraging her reaching and gripping skills. I was surprised and thrilled to see her hold her head up for a few seconds on her own the last couple of visits. It is most likely that she will not have a brain scan any time soon, so getting a head start on consistent therapy will increase her chances of having more functionality and mobility in the future. 

Her feeding tube apparatus was disconnected because they are attempting to go a full 24 hours without any nasal-gastric feeding. Our continued prayer is that she will improve her independent eating skills day by day, and be able to maintain and increase her weight without the assistance of medical care. Pending a positive weight and feeding check in the morning, and one last blood test, Rozyha and her mother should be released from the hospital to return to Jerusalem tomorrow. The tears welled up in her mother’s eyes as she hugged and kissed me when she heard the news. This re-admittance to the hospital and staying longer than planned has taken an emotional toll on her. It was great to see them both doing so well and expressing such happiness today.

Rozhya Moves Ahead

Posted on Thu, 08/29/2013 - 10:29 by Kristina Kayser

You know that moment when sunlight breaks through a dark and dismal sky and the storm finally passes? Well, that's what it felt like today during my visit with Rozhya and her mother. The last few days have been tumultuous, to be sure. With familial pressures on the outside and an emotional battle raging within, Rozhya's mom was desperate to return home. The only problem is that Rozhya is not quite ready. Her poor nutritional status had doctors at Wolfson gravely concerned with her wellbeing in the immediate future. It was in her best interest, they told us, that Rozhya stay for at least one more week to reestablish her weight and improve her eating skills.

Our entire community went into prayer about this, asking the Lord for grace and wisdom in caring for this precious baby and her mother. Praise God our prayers are being answered! After much tears, deliberation and encouragement, Rozhya's mother agreed to stay for another week of crucial intervention. To say we were all filled with joy and relief is an understatement.

With the help of Wolfson's cardiology and pediatrics team, plus a speech pathologist, nutritionist, and physical therapist, Rozhya is beginning to make small steps of improvement this week. During today's visit, she demonstrated more muscle tone and an increased appetite. Chocolate pudding was introduced a few days ago, and she loved it! The hope is that Rozhya will learn how to use her tongue to begin swallowing solids.

The other pleasantry of today was seeing a cheerful and peaceful spirit in Rozhya's mother. We talked a long time over the course of the day, allowing her to process her thoughts and struggles. The nurses even remarked how thankful they are to see her smiling. At the end of the day, we both concluded that though this journey has been full of challenges, God has been near at every step.

We will continue to rejoice and trust the Lord as Rozhya progresses one baby step at time. Please pray that she will regain and maintain a healthy weight quickly, in addition to learning the skill of eating solids. Pray also for her mother to keep an active interest in daughter's care and that hope remains secure. Praise God for His faithful and beautiful work in both of their hearts!

Tough Decisions

Posted on Wed, 08/28/2013 - 23:19 by Ashley Baugh

After Kristina spent the morning on the phone with Rozyha’s speech pathologist this past Tuesday, she and I set out for Tel Aviv to see Rozyha and her mother in person. The speech pathologist had met and evaluated Rozyha in the morning before we arrived. She has some ideas for therapy to improve Rozyha’s sucking/swallowing and ability to eat; however, she is only available Mondays, Wednesdays, and Fridays, and wanted to work with Rozyha several times before she would feel comfortable sending her out on her own. At 10 months, 11.8 pounds (5.4 kilos), is not a healthy weight, and she had continued to lose weight over the last four days of being off the feeding tube. Hospitalization and the presence of a feeding tube are essential right now to give her a fighting chance. Rozyha’s mother has been insistent on wanting to return home to northern Iraq as soon as possible. We were not sure what to expect, knowing that she felt strongly about returning home, but we geared up to handle whatever may come. 

As we came into the hospital wing, the nurses flocked to Kristina, relieved to see her and know that she could be a buffer between the staff and Rozyha’s mother. The combination of the language barrier and her mother’s disappointment in being re-admitted was causing a lot of tension between the health care providers and Rozyha’s mother. They were having a hard time getting her to cooperate with the treatments and instructions of the hospital staff. The doctor came out to talk about Rozyha’s unique situation; her medical opinion was very blunt and straight forward, she believes that without the feeding tube coupled by intensive ongoing therapy to re-train her to eat on her own, and introduce solid foods, she will greatly increase her risk of dying of malnutrition at home.
We knew we were walking into a battlefield, and once we got to her new room, to our shock and dismay, we found Rozyha’s bed empty and neither of them to be found. After an immediate phone call we discovered that she had disconnected Rozyha’s feeding tube herself and gone for a walk. We took the opportunity to pray for grace and the spirit’s leading during our visit, and they soon appeared to join us in the hospital room. After getting the nurse to reconnect and refill her tube and milk, we began the hard conversation of where to go from here.

Her mother quickly turned to a mess of desperation and tears. She pleaded and argued that she could get a feeding tube in northern Iraq, and continues to insist that she cannot stay in Israel any longer, that she needs to see her dying father, and that Rozyha will be fine. Her comments soon turned irrational, and she was virtually inconsolable. As Kristina took a moment to consult with the medical staff, I held little Rozyha and quietly prayed, as I had no human element to offer to the seemingly hopeless situation. It was heartbreaking to see this little baby in need of such crucial and readily available care, and her mother, exhausted and weeping in anguish over the thought of being away from her home, family, and sick father. Her mother finally calmed down and we began to revisit the idea of Rozyha staying in the hospital longer.  The feeding tube is merely a Band-Aid covering the issue of her inability to eat for herself. After several attempts to reason with her, the doctor reiterated that they cannot/will not keep them at the hospital against the mother’s will. So it is settled, as of now, she is planning to leave the hospital at the end of the week, and start the journey back home.          

There are several options we are considering at this time to follow up with therapy or alternatives to the current plan; however, the ultimate decision of Rozyha’s treatment and location lay with her parents. Her mother was in a much better emotional state when we left the hospital, and seemed willing to work with the staff and Rozyha to increase her weight, and get her the most focused attention and consistent therapy while it is available this week. We are confidently praying that God will comfort her mother during this difficult time, but also give her compassion for her child’s needs, and wisdom to make the best decisions concerning her future. It is still unclear the extent of her neurological damage, but we love this sweet little miracle, and will all make the most of this week to stimulate her motor skills, love on them both, pray for them, and connect them with every outside resource available to ensure that Rozyha continues to progress whether it be in the hospital, Shevet house, or in Iraq.

Committing the Future to God

Posted on Sun, 08/25/2013 - 23:13 by Jesse Tilman

Rozhya's mother has been under pressure from her family to return home as soon as possible to be with her unwell father. Just being at the hospital has also become a trial for Rozhya’s mother as she deals with hospital life. 

 

Today as we returned to the hospital for an echocardiogram Rahel and I prayed together for a positive checkup and hoped for a discharge soon.

However, this did not come about as we heard Dr. Tamir's prognosis. While he found Rozhya’s heart to be healing well and in great shape considering the state she was in when she first arrived, he was very concerned about her weight which has dropped significantly. 

One of the main reasons for Rozhya’s weight loss has been her loss in interest or ability to nurse very well. Because of this, we are looking into the possibility of having a specialist come to facilitate her rehabilitation. Talking further with her mother, we came to the conclusion that since there aren’t more flights to northern Iraq until Saturday, she would at least stay at the hospital until then and get the extra needed care for Rozhya.

Dr. Tamir's recommendation was that Rozhya stay in Israel at least two more weeks in order for her to gain back a healthy amount of weight before returning home to northern Iraq. We shared the mother’s concerns with the doctor as well as her family’s desire that both Rozhya and her mother return home as soon as possible. He listened before adressing Rozhya’s mother and saying, “I will not keep her prisoner here.” However, he made it clear that what was ultimately the best thing for Rozhya was her getting as much nutrition and gaining as much weight as soon as possible. To achieve this end, Rozhya was readmitted and had a feeding tube inserted.

In addition, the developmental problems which have been observed in Rozhya may have less to do with her lack of feeding or heart issues and more to do with a syndrome known as 3C syndrome (craniocerebellocardiac dysplasia), or Ritscher-Schinzel syndrome - but this is still just a theory. 

At the end of the day, it almost seemed beyond Rozhya’s mother’s strength to stay in the hospital. However, we prayed together with her in Rozhya’s new room and committed the future to God. Would you join with us in seeking the Lord’s help for this child?

Rozhya Back in Jerusalem

Posted on Tue, 08/20/2013 - 19:28 by Rahel Eschler

Traveling to see Rozhya was my quickest hospital visit in the last few days. And what a surprise was waiting there for us in the cardiac ward of the Wolfson Hospital. The nurse told us that if the results of Rozhya’s echocardiogram looked good and if her heart was working well, she would be able to come home with us to Jerusalem today! This was wonderful news for all of us and made us all excited.

As we entered Rozhya’s room, she was laying peacefully on a pillow, holding her new pink bear closely. We picked her up and accompanied her to the examination room of the cardiologist. During the examination, we could stop her from crying by playing some party music on her mum’s cellphone. As soon as we started playing the song, Rozhya would stop whatever she was doing and just listen to the sound. So we played it over and over again till the doctor had finished his work. After her echo, he told us that he was very pleased with the condition of her heart. It seems that there is still some fluid around her heart, but she is currently on no medications and will have another follow-up appointment this coming Sunday.

Rozhya’s mum was so excited to come back to Shevet Achim, after spending a whole month at the hospital. She was longing to see the other Kurdish mothers she had made friends with. These last days were really hard for her and she cried a lot. The reality of Rozhya’s discharge was a huge relief to her heart.

Rozhya is still not eating well, so please pray that she will be able to eat enough to gain weight in the following days. We also ask for God’s healing for the neurological delay she has. Above all we praise God for the healing that has already taken place and rejoice that she’s home with us in Jerusalem once again. She’s a miracle baby!        

Rozhya Wide Awake to the World

Posted on Thu, 08/15/2013 - 22:43 by Kristina Kayser

Rozhya was a different little girl when we saw her this afternoon. She was wide awake, looking all around, and sitting up in bed with a pillow behind her back. Doctors are pleased with the increased alertness she has shown in the last couple of days and is her doting mother. A neurologist examined her yesterday and determined that while a CT scan was not necessary, a cranial ultrasound would be a helpful diagnostic tool. The results were in today with unremarkable results, praise God. The current prognosis regarding Rozhya's neurological status is as follows: there doesn't appear to be any past incident of brain injury; however, serious developmental delay is present due to previous oxygen deficiency. The good news is that physical therapy is already producing positive signs of improvement.

One of Wolfson's physical therapists met with us today to instruct Rozhya's mother on helpful exercises to strengthen upper and lower body muscles. It was amazing to see Rozhya responding little by little to the various activities. Each success, great or small, adds to the miracle of this baby's healing.

Another area in which we hope to see steady improvement is her weight. A feeding tube was reintroduced yesterday to help supplement breastfeeding with extra calories. This was discouraging to Rozhya's mother who desperately wants to return to Jerusalem, but even more so to Kurdistan. She broke down in tears at one point as I tried to explain that Rozhya needs a little more time in the hospital and in Israel before doctors fully release her from medical care here. While they recognize her daily improvement, doctors are not yet able to offer a set timeline for her remaining treatment here.

Please pray for fresh strength, patience, and joy for Rozhya's mother at this time. May she continue to experience God's grace day by day as her baby grows stronger and healthier still.

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