Today, a team brought Maryam (above left) to Sheba Medical Center for another echo. She is having echoes once a month leading up to her next cath which will measure her pulmonary circulation.
Her progress has been steady after two surgeries, she now waits for her third. Today’s echo results were good, she is gaining weight slowly, and is free now of the thickening agent which previously helped her to drink without risk of aspiration. She is also able to use her voice again, for which we are so thankful.
The day called for coffee and chocolate before we left the hospital as we had an hour’s drive back to the Shevet Guesthouse in Jerusalem where Maryam and her mother Sara are staying. The doxology played on my spotify as we drove the long and winding road to Jerusalem, and I thought of Mimi’s journey.
“Praise God from whom all blessings flow, praise him all creatures here below, praise him above ye heavenly hosts, praise Father, Son, and Holy Ghost.”
He is the giver of every good gift, and seeing Maryam run around playing with the other children or hearing her speak where previously her vocal chords were damaged to the point where a whisper was laborious for her, is a picture of the words of the doxology. Praise God from whom all blessings flow.
Please continue to pray for Maryam and her mother who are patiently waiting through the good moments and the ones filled with anxiety.
It is a joy to see Maryam regain her voice and her strength. It always makes my heart happy to hear her voice call my name from her balcony, and then walk into my arms for an embrace. Mimi is incredibly intelligent and is so lovely. She loves the beach, and asks often to visit the beach.
Today she was dressed beautifully in a red dress for the hospital. When we left the house, she sweetly asked if we were going to the beach. Sara and I said that we could go to the beach later. When we started to approach the hospital, Maryam started to get more nervous. She often develops car sickness and vomits. Unfortunately, by the time we arrived at the hospital, her beautiful dress was soiled.
Maryam had a cardiology appointment at the hospital today. Her mother gently comforted Maryam throughout her echocardiogram. After playing with toys and being held by her mother, the doctors were finally able to perform the test. All the nurses and doctors love her. One very kind person even brought Maryam a gift, which was perfect for today — a new, beautiful pink dress. Praise God for his provision, and for a fresh change of clothes. Maryam later explored the hospital and smiled beautifully for this photo below.
Praise God for her smile.
The cardiologists would like Maryam to stay in Israel for the next three months, for Maryam to regain strength and for her pulmonary arteries to grow in order for the surgeons to completely repair her complex heart.
Praise God for her mother’s sacrificial heart. On the way back to the house, Sara mentioned that she was willing to wait for however long it was needed for Maryam to be well. She truly loves Maryam and hopes for Maryam to flourish.
Maryam will have another check-up in 3 weeks. Please pray for Maryam to gain weight, strength, and joy. We hope that both Maryam and Sara will feel loved and welcomed here. Please pray for a peace especially for Sara as she continues to be away from her husband and family; that she would have a peace that surpasses all understanding.
Today Mimi had a very hopeful Pulmonology appointment. I say hopeful because the doctor has said since she isn’t aspirating and is without auxiliary oxygen, she does not need to have a bronchoscopy. She hopes that in six to twelve months that the stridor and damage to her vocal chords will heal naturally, but what she needs is time.
So the Pulmonologist will see Mimi when she comes for her echo in two weeks, which will also provide more information the future surgery Mimi will have. Whenever that takes place however, her respiratory problems won’t inhibit her next operation.
For Mimi, although she gets very anxious at the hospital, everyone really loves her. The doctor who knew her from when she was first hospitalized, when he saw her, took Mimi in her arms and sat with her as she also provided Mimi crayons to color with.
It is a blessing to work with such caring and devoted doctors who make our kids feel loved. Please continue to pray for Mimi. We can see improvements even so soon after her discharge, so thank God for this evidence that she is getting better.
Maryam has returned to the Jaffa Center! All the families warmly welcomed them home. Maryam was reunited with many of her friends, and it was so lovely to see them playing together.
Please pray for Maryam and Sara to rest while they are here. We hope that Maryam will regain her strength. I always think of Maryam and Sara when I read Isaiah 40:29-31:
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
Maryam will have appointments in a week to check her lungs and her vocal cords. The doctors then will decide if a bronchoscopy is necessary for Maryam. Praise God that from a cardiac standpoint, her condition is well. Some of the anatomy of Maryam’s heart will need to grow prior to her next surgery, and we hope she is also able to grow strong in preparation for that as well.
It was so lovely to see Maryam today again. She loves stickers, and loves to name the colors of the stickers.
Maryam had a blood test and chest x-ray performed today. The chest x-ray results were worse than her last x-ray, and they have switched the form of one of her medications so it can act faster. During Maryam’s blood test, her oxygen dropped dangerously low. We hope that the doctors are able to perform a catheterization for Maryam, so that they can learn more about what is causing her low oxygen levels and to improve this situation. Please continue to pray for Maryam and her mother as they wait for improvement.
Mimi stable, doctors investigating
Maryam’s beautiful mum stood by her bedside today in the hospital and explained to me that Maryam’s oxygen levels are better than when she came into hospital, but still low. She has a nasal canula for oxygen support, which the mum is able to adjust depending on the saturation. It is much worse when Maryanm cries. Her breathing patterns are still quite unusual, and it was sad for her mum to think about the long journey of healing for her little Mimi.
Today she was due to have an x-ray and also to see the ENT doctor, to hopefully get a clearer picture of Mimi’s condition. It could be that she is aspirating when she drinks, and having the fluid go into her lungs. Whatever the doctors find out from their assessments, Maryam’s situation is difficult and upsetting for her mum. Please pray for them both during this time in the hospital.
It was a joy to welcome Maryam to our home in Jaffa. Her mother often said how Maryam would ask her if she could finally return “home”, to return to her new brothers and sisters. She fondly recalled each of the children’s names. The families here also welcomed them home with open arms.
She was only at the home for one night. The next morning, her mother called and was worried about Maryam. I found Maryam cradled in Sara’s arms, exhibiting signs of difficulty breathing. With her history of respiratory complications after her second surgery, we brought her to the hospital for a further assessment.
The cardiologists received her with care and wanted to perform additional tests on Maryam. She was first admitted to the respiratory emergency department. She needed to first pass her coronavirus test prior to being admitted to the cardiac unit, but also needed to receive care during the waiting period for the test results. During this waiting time they were able to perform more diagnostic tests and to give her oxygen support. Her X-ray was worse than the previous day, and the doctors were able to give her additional medication to help remove any excess fluid.
Maryam was so afraid of the nurses and doctors, which only worsened her symptoms. Sara was so brave in comforting Maryam. She was scared, tired, and confused as to why Maryam was in this condition. Yet she brought all these concerns to God.
We were isolated in a room together for around 8 hours. In this waiting time, we prayed together, laughed together, and cried together. Sara shared about her hospital experience, and how Maryam still had a long journey in her road towards healing. Maryam will need more exams and more intervention procedures including another surgery. We were both comforted in knowing that God was walking with Maryam, every step of the way. Sara shared her trust in knowing that God is holding Maryam in His hands. He is not only with her now, but will be faithful and steadfast for the rest of her life.
Maryam was finally transferred to the intensive care unit, where they could perform more tests and monitor her. Please continue to pray for Maryam and her family as they continue in this long journey.
Trust in the Lord with all your heart
Maryam had her second surgery today. It was like a repeat of the first surgery, but on the other side of the body. As a part of Maryam’s condition, she has some extra blood vessels which have developed through which blood flows to the lungs, as her heart is not formed in a way which allows the blood to flow in a typical way, including to and from the lungs.
Maryam or “Mimi” has been on this multi-step journey to address this, and the idea in these two surgeries is to group together these extra blood vessels, and reroute them. Already the mother noticed an improvement in Maryam’s oxygen saturation levels after the first surgery, and so she was hopeful that after this surgery there might be even more improvement. Still, this is not the end of the journey for little Mimi.
Today, Sara (Mimi’s mum) and I reflected on her previous worried feelings that she wouldn’t be able to come to Israel, worried for Mimi having a CT scan, and a catheterisation, and surgery, and another surgery – yet by the power of God, she has coped with added strength and peace in all of these difficult times of waiting for her daughter. Where does the strength come from? Trust in the Lord with all of your heart, and lean not on your own understanding…
The surgery today took about 4 hours, which is longer than the last one. The surgeon told us that the result was very good, and that they hope to make a catheterisation for her next week. The reason will be to assess the condition of her anatomy. It’s likely that she will need another surgery after this, but perhaps not for another few years! We need to wait and see after the cath.
“Another cath! So soon! And then surgery!,” exclaimed Sara. It feels like this journey is a river, which flows freely with Maryam being taken along without a worry at all, and that Sara is to also jump into the river and be carried by the grace of God and the power of the Holy Spirit during these times; she must rely only on God.
Thank Him for a lovely day together, and for the good news of another successful surgery for sweet Mimi.
Maryam’s mum contacted us today with the good news that Maryam is recovering nicely after her surgery. She has been extubated already and had an echo today which showed that the surgery looks good.
Thank God that He is keeping her safe and recovering well. Please continue to pray for her and her precious mum.
Maryam "Mimi" has her surgery tomorrow
Maryam went to Sheba Medical Center looking like Cinderella in a blue and white dress. This afternoon the hospital called to say please bring Maryam for surgery tomorrow, so there was a rush for Maryam’s mum, Sara, to pack and get herself and Maryam ready. The other families, most of whom have been through surgery now and know well how it feels, all helped Sara to get everything together that she’ll need for this time: sugar, tea, bread, biscuits, and a random role of paper toweling, were among the items the other mother’s packed for her.
Sara has been anticipating this day for a long time. Her daughter Maryam, or “Mimi,” does not like the hospital. As we waited for the room to be ready, Mimi was her normal self: pacing up and down the hallway or watching YouTube videos. At one point, Mimi saw another waiting mom at the hospital go off to pray, so Mimi also, right there in the hallway, knelt down, pressed her hands together in front of her face, and started praying too.
As we walked the halls, her mum told me that Mimi often says, “God will make a surgery of my heart” and in bringing them here he has done that. Tomorrow He will be with them and with the surgeons in the operating room. But it also amazed me that in that one sentence, this little two year old basically analogized the Gospel: it’s God doing heart surgery on us.
When the hospital room was ready, we went up to the sixth floor. Immediately Maryam began to have a catastrophic melt down, even though she did not yet have to face the cannula. The rooms, the tests, the doctors all scare her, and only her mother can bring her some semblance of peace. She cried so much that when the nurse left, she fell asleep. She drifted into sleep gazing up at her mother’s face and stroking her cheek. Sara and I prayed together afterwards for the surgery and the future, for the fear, and for full healing. In the words of Mimi, ‘God will make a surgery on my heart,’ and if He is for us, who can be against us?
Beautiful Maryam was admitted to Sheba Medical Center today! She had a CT scan and will stay over night for her catheterization tomorrow.
She is very bright. She knows she only travels in the car when her destination is the hospital, so she understood where we were immediately. As she wept, her mum was the best comforter, always steady and calm for Maryam.
When we got to the hospital, she immediately went to their children’s play area. As she explored, I remarked to her mum that she is very intelligent, to which her mum replied, she knows she is!
After this, Maryam asked her mom for a purple balloon, which she dutifully received, and then grasped as we walked to her room in the secondary ICU. The nurses were so welcoming and kind to her. Two of them were Arabic-speaking and could communicate with her mother.
We said goodbye to each other before I left both of them! They are in such good care at Sheba hospital. Please pray for Maryam and her sweet mum!
Maryam's first visit to Sheba Hospital
For our new Kurdish princess, the first assessment was scheduled today. She hadn’t expected it when her mom woke her up in the morning. I think she sensed that something different was happening today be- cause she cried all of the way to Sheba Medical Center. She was so excited and scared that she ‘cast up her accounts’ in the car ride there.
But when we arrived, we were able to distract her with playing and the fear was gone. Thank you God, for calming her down! She mastered her first tests brilliantly. At first she will need a CT or a catheterization. The doctors are discussing about this and we will wait for the next appointment.