Today was the bittersweet day as we finally had to say goodbye to our little baby Brwa and his mom. Those coworkers serving here at Shevet for a longer time know that saying goodbye is a normal part of the work here and even though we get used to it, it doesn’t get easier. There is some truth in the fact that every person spends just some period of time in your life with you and no matter how short or long this time is, we should use the chance to love this person and be there for them. Even if they forget everything that happened here, we pray that they never forget how much we loved them and even more important, how much God loves them.
During his farewell party this afternoon, I realized again how Brwa and his mom spent two thirds of their three months here in the hospital. This had to be such a challenging and exhausting time and yet his mother was always so happy and kind to us. We enjoyed it so much to spend time with her in the hospital and then those last weeks here in our house. We talked and laughed so much together and also went through the hard times and cried together. I still remember that night very well when Brwa was placed on ECMO, as it was the night that one of our other beloved babies died just two rooms over in the ICU. We were shocked and afraid about what would come next, but God was greater and had amazing plans for Brwa.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11
God decided to heal Brwa and we thankfully look to the future, exited about what God will do in Brwa’s life. I loved caring for Brwa even while his mom joked that I am his mother now. I will miss them both very much. At the same time, we’re so happy to send a healed boy home to his father, his brother and sisters!
God please bless little Brwa and his whole family. Keep them safe and show them your love every day! Thank you that you have a future and a hope for Brwa and for all of us!
Our little miracle is going home
This morning we took Brwa for another gastroenterology appointment at Sheba Hospital. We heard that his blood test results are better than the last time which is a good sign. But still the doctors can’t say a hundred percent for sure whether the problems have been caused by everything he went through or are genetic. There are still test results pending from his genetic test a couple weeks ago, and only then we can know for sure.
For now Brwa just needs another blood test and gastroenterology appointment in one month. The amazing news that his doctor shared with us though is that he can have all of this in Kurdistan. So after he was already three weeks ago discharged from his cardiologist, Brwa is now cleared to go back home to Kurdistan!! He’ll have all his cardiac, gastroenterology and neurology follow-ups there and is doing very well now.
After a long day of waiting, Brwa’s mother wanted to say goodbye to another mom in the hospital as they won’t see each other there anymore, and then we brought Brwa and is mom back to Ashdod.
Later today, I looked with Bria through Brwa’s blog and the pictures of him from when he first arrived. We’ve been just amazed how much our little boy was growing during his stay here. When we look back at this whole time he was here and how much he went through, we can only thank God. It is a miracle that Brwa is still alive and doing so well! He was on the ECMO but except for maybe some little problems with his liver now, he doesn’t have any consequences from it.
We will miss our baby in the house very much and also his funny and amazing mom who always loved to teach me Kurdish. On the other side however, we are very happy that they can go home to their family.
Thank you God for Brwa’s life and for healing him! You did all those miracles in his life!
Another test and another day waiting
Today, Brwa finally had his long-awaited gastroenterology appointment where we could learn about the test results from his liver biopsy. Doctors at Sheba Hospital found a problem in the bile ducts of Brwa’s liver, but they don’t know yet if it is a genetic problem, or if it is caused by everything he went through.
Problems like this can be the consequence of too low oxygen or of the ECMO. To find out if it is a primary or secondary problem, he had a blood test again today. If in comparison to the last time, his blood test results are better, it is most likely a secondary problem and will dissipate as the time passes. If the results are worse, or the same, it’s probably a genetic problem which most likely requires treatment.
Tomorrow morning Brwa will have another appointment with his gastroenterologist where we will hear about the blood test results and what the next steps are. Please pray for good results tomorrow morning and that Brwa will be cleared to go home to Kurdistan. We love spending time with him and his mom so much, but she misses her husband and other kids and is very needed at home!
Beach trip; four months old celebration
Brwa is still staying in our community home in Ashdod with us while he is waiting for his gastro follow-up at Sheba Hospital.
Today we celebrated his turning four months old by going to the beach in Ashdod. His mother was so happy and she took many pictures of him at the beach.
Then she got in the water with coworker Johanna, Coworker Laura and I jumped over the waves.
Brwa had an amazing four month celebration! .
Nearly two month after his big surgery, our cute Brwa was finally discharged to our house in Ashdod today. This little boy was growing so much in his time in the hospital and we are very happy to welcome our baby back in our house.
Before we left the hospital he had an echo this afternoon and his doctor surprised us with the news that from a cardiac standpoint Brwa is already discharged to Kurdistan. His heart is looking great and he only needs to come back for another echo if he still is here in one month.
The only thing keeping him in Israel for right now are the missing results of his liver biopsy yesterday. He will have a gastroenterology appointment in two and a half weeks where we learn about the results, and after which we hope to send him and his eagerly waiting mom back home.
I’m so amazed how good Brwa is doing especially when I think back to the night he went on the ECMO. His condition was so bad then, we and his mom were so worried about him and now he is such a cute smiling little boy. God thank you so much for healing him. Please give him good results of his liver biopsy and bless the time of him and his amazing mother with us here in Israel!
Sweet little Brwa had his liver biopsy this afternoon. It was a very quick procedure– only about 10 minutes in total– and we found him sleeping peacefully in the ICU afterwards.
Brwa’s doctors will examine the results of the biopsy to determine what treatment he may need for the abnormality in his liver. In the meantime, as long as he is stable overnight, they hope to discharge him from the hospital tomorrow.
Brwa, our miracle child who survived the ECMO machine, continues to be well. The doctors at Sheba Hospital continue to monitor him for side effects from the ECMO machine. Brwa’s hearing test results came back today and showed no loss of hearing. His brain MRI shows a small amount of damage, but it is unclear if this occurred before surgery or during Brwa’s time on the ECMO machine. Brwa’s physicians are hopeful that the damage is not serious.
God designed children’s brains to be incredibly resilient. A follow-up appointment with a pediatric neurologist will help us know how to keep praying for Brwa.
Today, Brwa had an eye test and the results were good. Brwa’s retina looks good and he doesn’t show signs of his eyes sustaining any damage after the ECMO machine.
In a few days, Brwa will have a brain test. But for now, she’s stable. Brwa will start sessions with a therapist to improve his movement and contribute to his development. Brwa needs to learn how to eat again, because he was being fed by a sonde all the time compared to now only via one at night. Nevertheless, he needs to re-learn.
My coworker Tatiana and I visited Brwa at Sheba hospital. He is extubated now and doing really well, even though he still has a little bit of fluid in his system. The doctor said he is glad to see the strong recovery. All that showed on his mother’s face, and I was happy to see her more relaxed, still vividly remembering the despair she had to go through after the complication on the long surgery day.
Blessed with a steady improvement after coming off ECMO, Brwa will be a powerful hope for all those children who would have to be placed on it in the future. ECMO was a scary word for us, but not any longer! Praise the Lord for this hope He gave us!
Today, coworkers Tatiana, Margarita and I visited Brwa at Sheba Hospital. It has been a week since he came off ECMO, and has been stable since. His mother told me with a smile that his fluid levels are diminishing and wetting his diaper so that’s a good sign. Her biggest joy was to see him open his eyes. I do not speak Kurdish, but you do not need any language to communicate this kind of joy.
Brwa’s doctor said medications for pain and sedation have been discontinued. When I came into the hospital room, Brwa not only had his eyes open, but was looking around the room curiously. Thank you Lord for blessing him with a good recovery.
Today, also in Sheba Hospital, another child from Kurdistan had a diagnostic cath and his mother was in the waiting room too. Brwa’s mother, sitting right next to this other mom, gave her calming words of encouragement because she was in the same place herself two weeks ago, patiently waiting for the seven-hour long surgery to be finished for Brwa. It is a beautiful thing when God sends someone who can truly understand what you are going through.
Brwa was successfully removed from the ECMO machine; the surgeon and doctor are optimistic about his quick surgery.
The doctor said he was happy because they had success with closing Brwa’s chest. The doctors are positive about the possibility to remove Brwa’s oxygen support in the next days, if his improvement and strengthening are enough to do the procedure.
Pray for Brwa and his mom who was nervous today while we were waiting. The doctors recommended she walk outside the hospital and take care of herself.
Our brave little Brwa had a surgery at Sheba Hospital today. The doctor said everything went smoothly until the last part, when he had a little trouble as the left part of his heart was not pumping well. The doctor decided to place Brwa on ECMO as a precautionary measure after reading the echo. The doctor said he is optimistic because Brwa was doing ok even without the machine for a whole hour, which was a good sign. The doctor wanted to understand exactly why his heart was struggling, so Brwa had a CT scan post-surgery. The result was good, and Brwa stays on ECMO for a while to give his heart a little rest so that it can do its work when it is ready.
I do not understand Kurdish, and there was not much I could do for Brwa’s m0m. I just prayed to God while she was calling Allah’s name, crying out loud, and watching a doctor with a kippa doing his best for Brwa. Brwa is tiny, but is surely a fighter! Lord, bring a new morning and let his heart beat strong.
Our cute little Brwa, who arrived not so long ago, will go into a big heart surgery tomorrow at Sheba Hospital.
The doctors plan to switch his aorta and pulmonary arteries and repair the holes in his heart. This is a lot to fix, so the doctors might decide to separate it into two surgeries.
It’s really good that Brwa can have his heart surgery so young. Also, his mother is wonderful and cares about her little darling boy. We pray that this big surgery will go well for cute Baby Brwa! Please join us in prayer for Brwa and his mother.
We took cute little Brwa to Sheba Hospital for a blood test today. We had a little trouble checking him in with the printer not working at the nursing station and all, but Brwa stayed calm and content all the day.
The nurse had to poke his tiny hand twice in search of a good vein. He cried a little, but the pacifier with a little sugar on it helped. After the second try, the nurse was getting a good flow of blood to fill the two tubes, while Brwa’s mother was gently holding his arm. Brwa was so brave to stay calm. We are so proud of you, Brwa! After the blood work, we drove down to Ashdod safe and sound.
Lord, please protect Brwa and his mother and make the appropriate surgery happen at your appointed time. Please bless them as a part of the Shevet family, so that they can make themselves comfortable.