Noor's Heart Surgery


Thumbnail: 
Noor
Age: 
0
From: 
Kurdistan, northern Iraq

The Language of Love

Posted on Sun, 03/19/2017 - 21:17 by Susanne Minshull

Noor's Grandmother requested a visit to Jerusalem before she flies back to Kurdistan. It was a privilege to accompany her to our community there, where we stayed two nights. She was taken to pray in the Al Aqsa mosque, on the Temple Mount in Jerusalem. We also went to the Garden Tomb, which was very peaceful. Then she joined us at a small party in our community held after a baptismal service. 

Spending time with her I have learnt a little bit more Sorani Kurdish, but she is able to speak three languages, and she confused me by often adding, "and in Arabic it is called..." I have been able to say a few words over the phone with Noor's mother in Kurdistan, and also spoken in Swedish with her relatives in Sweden. I think it has been very important to them that people here are trying to learn to speak their own language.

But the most important language we speak here is the language of Love. The Love we have received from God. It is also the easiest to understand. Noor's Grandmother will soon return to Kurdistan, and I know that she and Noor's mother have heard that language. They know that we too have loved Noor and grieve for her.  We have laughed together and we have cried together, and both Noor and her Grandmother will always have a place in my heart.

Exit Through Another Door

Posted on Fri, 03/17/2017 - 00:17 by Susanne Minshull

Despite her deteriorating condition, Noor was given one last chance by the surgeons and given emergency surgery. Although that in itself was successful, her tired heart didn't have the strength anymore.

In the video the doors are closing behind her. Noor took another exit, we believe, into the arms of our loving Heavenly Father.

When Things Don't Go as Planned

Posted on Thu, 03/16/2017 - 19:44 by Susanne Minshull

We arrived at Sheba hospital today expecting to be with Noor's grandmother while Noor was having surgery this morning. This was not to be. It took us a while to get the whole picture, but it seems that because of complications during the night, the surgery had to be cancelled.

It was heartbreaking to hear Noor's mother in Kurdistan burst into tears over the phone when she was informed. Imagine being so far away and getting all information third hand, translated from Hebrew to Arabic to Sorani.


Later, after several investigations to establish Noor's present condition, we were taken to a room with several doctors and informed that Noor needs surgery to survive and that she is at present too ill to survive surgery. The team that was prepared to operate on Noor today will be available the whole weekend if there is enough improvement to risk surgery.

Everyone I have met at Sheba has been so nice and helpful.  It is an impressive place. and it is so good to know that by being in this place, Noor could not had been given a better chance to survive.

After getting the information, we returned to Noor and just looked at her and loved her. I told her Grandmother, "Noor le dest a Xhuaya" - Noor is in God's hand. And that is not a bad place to be. Her grandmother is currently at our Shevet home where she has other mothers to talk to and to cry with in her own language, and a place to rest before we bring her back to the hospital tonight. We can only wait and pray.

Whatever happens over the weekend, we know that God's hand is big enough to hold us all.

 

A Long Day of Waiting

Posted on Tue, 03/14/2017 - 22:21 by Susanne Minshull

Today I visited Noor at Sheba Hospital. She is still in a critical state and today the doctors were able to identify her problems.  First, they did a bronchoscopy to check her trachea, which was very narrow at birth and which they widened during her surgery.  Unfortunately it is now blocked, and she was referred to the ENT specialist surgeon.  After that she had a catheterization to check why her heart isn't working well enough to take her off the ECMO machine. They discovered one problem they could deal with straight away, but unfortunately they could see that the left chamber of her heart is not strong enough to pump the blood on its own. That will mean further surgeries to turn the two chambers into one that is strong enough.  At the same time the problem with her trachea will be dealt with.

To me that sounds like complicated surgery, and I look at this little frail but beautiful body, so well cared for by the staff, and my heart aches for her and her family who have to, in a sense, start all over again.  Join us in praying for this little girl and family as well as the surgeons.  Pray in any language you can.  Today we prayed in American and Swedish on the ward.  Pray for strength, pray for hope, pray for skill, and pray for healing.  As Noor's grandmother said in Sorani, "Xua Gawraya," God is great. He is using us all to show the family His love for this little girl.

 

Friends, Hope, and the Sea

Posted on Sun, 03/12/2017 - 23:21 by Ruth Zellweger

Noor's grandmother spent the last three nights at the hospital to be close to her beloved granddaughter. We talked several times throughout the weekend, and she shared with me her joys, but also the difficulties of watching Noor and seeing her in such a helpless condition. Nevertheless, she is a very strong woman who has been the main caretaker for Noor since her birth. Her love for Noor is deep and strong. She regularly communicates with her husband and the parents of Noor to keep them in the loop, but also to be encouraged. 

A few days ago, members of our Kurdistan community and a recently-returned father went to visit Noor's family in Kurdistan. Noor's grandmother received some pictures of that visit which she showed me today. I could tell how grateful she was for the time that these friends invested to stop by her house. 

Over the weekend it still was not possible to wean Noor off the ECMO machine, which allows the heart to rest. The doctors tried a few times, but as soon as they attempted it Noor's blood pressure dropped dramatically. I was able to witness this myself this afternoon, after the medical team had cleaned the open wound around Noor's heart. On Friday afternoon, Noor received the special medication, Levosimendan, and the hope is that it will help Noor's heart to function better and on its own. The longer Noor needs to be on ECMO-support, the less likely it is that her heart will function properly on its own. The plan is to try to stop the ECMO machine tomorrow morning, and if that is not successful, they will take Noor into the cath lab to see if there is an issue that needs to be treated.

Noor's grandmother came with me to our Jaffa home this afternoon. In the beginning she wasn't sure if she should come, but in the end she decided to join. Of course we made sure that the medical staff would call us if Noor's condition worsened. When we reached the house, Noor's grandmother saw the Mediterranean Sea nearby and asked if I wanted to go for a walk. I could tell that this time was therapeutic for this tired and stressed woman. First she wached the sea from afar, took some pictures and just stood there. But then she went to the shore and started collecting sea shells as gifts for her other grandchildren, while the waves were breaking gently on the shore. By the time we went back to our house, she was more at peace and settled. 

Noor is still very fragile and in a critical state. Seeing her lying so helplessly in her big bed, connected to so many machines with big tubes and cannulas all over her body, is not easy to behold. We know that it is only by God's grace and mercy that she has made it this far. And we also know that she needs His special touch in order for her heart to function correctly on its own.

Please join us in praying for precious Noor and her family. 

 

Our Little Fighter

Posted on Thu, 03/09/2017 - 22:55 by Agnes Bruna

Today Suhail and I went to take Noor’s grandmother back to the hospital. For me this was the first time I had seen Noor – the grandmother I had seen earlier this week in Jaffa after dropping off Zakariya and Nyan at the airport.

She is such a beautiful little doll. She was still connected to the ECMO machine. Twice now the doctors have tried to wean her off it – once yesterday and once today just before we came. But each time her little body was unable to maintain her blood pressure. So when we walked in, the doctors were just having a meeting to decide on a treatment plan for her.

While waiting for the doctors to finish their meeting, the grandmother had a little chat with a mother from Jenin. She talked some with Suhail, and one of the nurses spoke with her in Arabic to explain what is happening. The grandmother seems very calm, but also sad it is taking so long for Noor to overcome all the obstacles after her surgery.

Once the doctors were out of their meeting, they took quite some time explaining to me what is happening. They confirmed what the nurses already told me, that she is unable to maintain blood pressure when she comes off the ECMO. They have found a medicine, called Levosimendan, which is not normally used for infants, but only for adults. Which is why the doctors needed to have such a long meeting. As the parents are not here in Israel with Noor, they cannot give their consent, but the doctors found a solution for this by signing off the medication by three separate doctors. She would get this medicine during 24 hours, with the effects lasting for two weeks. It would help her heart to contract properly to pump the blood through her little body. After that they hope – and we can pray – that her heart will be strong enough to contract on its own.

Looking again and again at little Noor, who had such an eventful and timely journey to Israel, I can only think what a little fighter she is. And how much God wanted her to come here to get the help she needs to survive. Please pray with me that God’s healing hand will continue to be on her life, and that God will give wisdom, skill, and strength to the doctors and medical staff treating her with such care, patience, and compassion.

 

Fragile Noor

Posted on Tue, 03/07/2017 - 22:52 by Alexa Bigl

Today, Melissa and I brought Noor's grandmother back to Sheba after she spent the night at our Jaffa house. She had been worrying about Noor all night and had not been able to rest well being so far from her precious granddaughter. She was much relieved to see Noor in her hospital bed. Although Noor is still sedated and on the ECMO machine, unresponsive because of the medications, Noor's grandmother was much more comfortable being nearby her granddaughter. 

The surgeon let us know Noor had pleural effusion, fluid around her lungs, and they would do a procedure to drain the fluid. Since Noor's chest is open, they were able to do this without inserting new tubes or adding new incisions to Noor's little body. 
 
 
The head of the ICU and another cardiologist sat down with us to explain, again, what happened with Noor yesterday and what the plans are for the coming days. It was very touching to see the doctors taking so much care. They thoroughly explained what happened with the surgery (see Ruth's blog below) and also told us how they are hoping to change a few of the machines and some settings to starting weaning Noor off the ECMO machine. The weaning will begin tomorrow and may take one or two days. The doctors told us prayer will be a big factor in Noor's recovery. Noor is still not stable and there is great risk in the coming hours and days. We need to continue to ask for the Lord's healing hand to work in mighty ways. And we also lift up continual prayers of thanks for the way He has orchestrated His plan so far. 
 

Noor and the Great Physician

Posted on Tue, 03/07/2017 - 01:17 by Ruth Zellweger

A special day lies behind us - Noor's big surgery day. It has been a day that I will definitely remember and reflect on, as God's grace was poured out on little Noor. 

Debbie and I arrived at Sheba hospital around noon and found Noor in the big hospital bed in her ICU-room. Her grandmother was not there, but Noor's nurse was, and so was a special technician who is monitoring the extracorporal heart-lung machine (ECMO) that Noor is connected to. Shadi, the nurse, told us that Noor was connected to the ECMO yesterday afternoon. Noor was moving her hands and feet, and it was heartbreaking to see this precious baby lying so helplessly in her bed.

We had two hours of waiting before the surgery started. We spent this time together with the grandmother in the waiting room next to the operation room. After a while we went to check on Noor, took pictures, and prayed.

About ten medical staff (doctors and nurses) prepared Noor for several minutes, and around 2:00 p.m. Noor was wheeled into the OR. I was surprised by how many people were needed to transport Noor safely to the OR, but also touched by the care the medical team was taking. 

Then the waiting began, which was actually peaceful and pleasant. Of course Noor's grandmother kept her children - Noor's parents - up to date and talked to them often on the phone. We were also joined by several of the Gaza mothers who also had a child in the ICU. Over the past week, Noor's grandmother has made many friends.

After five hours, the surgeon came out and reported that they had done a full repair on Noor's heart and that it looked fine. However, due to the serious issues she had been experiencing due to her obstructed trachea, the surgery was not finished yet. Step two was to get rid of the obstruction, which took another 80 minutes. The surgeon came out again and told us that the repairs were finished. However, due to her size and complexity of her surgery, the doctors decided to keep her connected to the ECMO a little bit longer. We were very thankful for the good reports, and Noor's grandmother shared everything with Noor's parents. 

After a while, the two ICU-doctors on duty explained to us that Noor's surgery had been very complex. One of them told us that he had not seen a case like Noor's in his fifteen years at Sheba hospital - someone so tiny and so sick undergoing such a procedure. He also said that Noor is not stable, and the next hours and days are very critical. While they are doing the best they can, they cannot promise that Noor will make it. 

Noor's grandmother understood, but still expressed her heartfelt thanks to the doctors. She also said that Noor's life is in God's hands. The doctors nodded. 

It is amazing what today's medicine and skilled doctors and surgeons are able to do. We are truly thankful. In Kurdistan, Noor would not have made it. Our heavenly Father, full of mercy and compassion, sustained her long enough to come to Israel. Only then did she so quickly deteriorate. Today, the surgeons and doctors accomplished great things by doing a full repair on Noor's little heart and fixing her problematic trachea. But we know that this is all only because of the true Great Physician, who created Noor and knew her before she was even born. He is the one mighty enough to save, and in Him we continue to trust for Noor's healing.

Noor to Emergency Surgery in the Morning

Posted on Sun, 03/05/2017 - 21:43 by Debbie Sturm

Today Brenda and I went to visit Noor and her grandmother. We had planned a short visit, but when we arrived the grandmother seemed to be upset. We were told that Noor's status has deteriorated, and the doctors have to do the surgery right away. How good that we came this afternoon - God's timing is perfect. We spent two hours with Noor's grandmother walking around the hospital and getting some food. I was suprised how calm she was. She did not cry any more and seemed so strong. When we came back, we found Noor in her room and heard she had not gotten her surgery yet. The doctors had to reanimate her, performed a tracheostomy and gave her some blood transfusions.

Please keep Noor and her grandmother in your prayers as the doctors plan to do emergency surgery tomorrow.

 

A Strength Like No Other

Posted on Thu, 03/02/2017 - 23:01 by Alexa Bigl

Yesterday and today, Debbie and I had the opportunity to visit Noor and her grandmother at Sheba Medical Center. On Tuesday Noor was intubated, so a tube is going from her mouth into her trachea and a machine is breathing for her. During our visit yesterday, Noor was stable, and we learned she was scheduled for a catheterization this morning, since the doctors wanted to get a better idea of the anatomy of her heart. Noor's grandmother showed us around the hospital yesterday, and we got to see the place she has to rest, shower, and eat. We ended our visit yesterday by praying over tiny Noor in English, German, Kurdish, and Arabic. 

This morning, Debbie and I arrived about an hour before Noor went into her catheterization. We went to see her in the ICU first, and learned she would still have to wait a while before it was her turn in the cath lab.
 
 
So, we walked around the hospital compound, looking in at the stores and getting some coffee and a shwarma for Noor's grandmother. We then headed back up to the ICU to learn Noor had just been taken down to the cath lab and we could expect a 2 hour wait. We waited outside of the ICU for 5-month-old Noor to be wheeled back up, and were surprised when the grandmother jumped up after only 45 minutes, having seen Noor. We followed her into the ICU and got an update from the cardiologist who was scheduled to perform the cath.
 
Noor had arrived at the cath lab, and soon after the anesthesiologist began having issues adequately ventilating Noor. It seems the intubation tube had become blocked or dislodged, so they took the tube out and tried to stimulate Noor to breath on her own. However, her precious body wasn't cooperating and her heart even stopped beating for a couple minutes. The medical staff began compressions and worked to re-intubate her. It was a struggle to get her re-intubated, and the doctors and nurses were very concerned about what had initially caused the ventilation problem and why the re-intubation was so difficult. 
 
 
They had her stabilized her upon her arrival back to the ICU, so the doctor took time to explain everything to Noor's grandmother and ensure she had her questions answered. They wanted to do further examination into the issues, but needed to consult with the pulmonary department and were unsure about the timing of these tests. However, things moved quickly, and about 1 p.m. the team was setting up to perform a bronchoscopy. Some time later, the pulmonologist came out to share the findings. Noor has a section of her trachea that is very narrow. They were not able to determine if this narrowing is an anatomical defect yet, but they know the section that is narrowed is very tiny. The beginning of next week an ears, nose, and throat specialist will assess Noor to help determine the underlying cause of the narrowing. Learning if it is anatomical or if it is narrowed due to swelling or some other reason is going to be vital in order to determine what the next step will be in Noor's treatment. 
 
 
Noor's grandmother asked good questions and remained calm as she processed the information. Throughout all of today, with all the serious and scary things that happened, Noor's grandmother remained a rock. She is obviously a very smart women and understood everything that was going on; she asked appropriate questions and related the information to her daughter and son-in-law (Noor's parents) over the phone very clearly. She was calm and collected throughout the whole day. During our waiting periods she showed us pictures of her whole family, describing her different grandchildren, nieces, nephews, and children. The investment she has poured into her family is truly beautiful! I can see how this grandmother is a central figure in her large family unit, and Noor is a lucky granddaughter indeed. 
 
 
Noor will remain intubated in the ICU for the next few days. We will be praying her body can recover from the cardiac arrest and other issues she faced down in the cath lab. We also pray for the narrowed area of her trachea, that it will be healed over the coming days. The timing of Noor coming to Israel was God-ordained, and we are encouraged by the reminder of His supremacy. We can continue entrusting her into His hands knowing His plans are good. She needs the hands of the Lord to heal her, and the difficulties we faced today demonstrated how our fragile lives are sustained by our Creator and Father. Please join us in praying for Noor and her family as we entrust Noor's life to our Heavenly Father. 
 

Pages