Rebekah was transferred out of the ICU at the upper limit of care that can be provided outside of the critical care setting. Over the last twenty four hours she’s been vomiting periodically and spiking her normal daily fevers. Then this afternoon we got another “come back to the hospital as soon as you can” phone call while were out for a short break. A brisk walk later we were in her room watching her do her “she-hulk” impression (which is nice because it means she’s strong enough). Her heart rate and oxygen levels had gone down for about two minutes. The nurse that was attending her responded rapidly by calling the “code” team but little Rebekah only needed some extra oxygen to sort herself out. Back to the ICU she went though.
Hopefully this won’t change anything. I actually think it was a simple combination of something called a vagal episode, benzodiazepine withdrawal, and low potassium. There could be an infectious process in the mix too. She’s on stronger antibiotics until they figure it out. It’s nice to know how rapidly and extensively they respond. There must have been about twenty people in and outside her room.
Tomorrow the transplant doctor is going to sit down with us to have a formal transplant discussion. On Wednesday a multidisciplinary team will decide if she goes on the transplant list.
From Nathan’s “Rebekah Strong” post Thursday:
We are in the midst of relative calm between violent storms in Rebekah's journey. She needs this break. So do we.
The doctors continue to make gentle changes to Rebekah's care. Yesterday they decreased her narcotics and added a less addictive pain medication. The modification has increased her wakefulness which allows her to move more but increases her supplemental oxygen requirements. She's periodically less comfortable but nowhere near as much as she was previously. The less narcotics she needs now the better. Weaning her off them after surgery will be a gruelling task. They'll be gentle about it but suffering withdrawal will be one of the many difficulties that Rebekah will have to endure after surgery.
Then there's the surgery itself. We learned yesterday it's been scheduled for Tuesday February 6th at 8am. That date remains contingent on the same variables as before; a bed in the PICU and her condition. She must remain infection free.
We can't even begin to process our feelings about it. We want her to get it at the right time. If the right time is Tuesday then so be it. We urge people to pray for God to take the helm and guide the process.
Everyone following this page has done so voluntarily because they care about us and have agreed to pray for Rebekah. The blunt description of what comes next is difficult to write. I'm sharing it so everyone here appreciates the severity of Tuesday. I hope it motivates people to pray fervently for Rebekah. I know many of you already have and are.
I don't want to be gruesome. Everyone can imagine what "open heart surgery" means. The blood will be shunted from her heart to give them the opportunity to operate. A machine will oxygenate her and maintain her blood pressure for up to eight hours. It's plastic so her body won't recognize it and her immune system will attack it with fervour. When the angry blood reenters her body the attack will continue. This will cause her blood vessels to leak and dilate. Norepinephrine and epinephrine will keep her alive but the fluid shift will likely be massive. The load on her liver will be dramatically increased. Her recovery will be as difficult as the surgery itself. It will take days or weeks. She'll have to drain the excessive fluid. Her heart will have to learn how to work with it's new circuitry. Her liver will have to recover.
They do these surgeries all the time here at CHEO. Rebekah's procedure is described as "higher risk" because other organ systems leave the doctors with questions. They forecast her liver holding up to the increased demand but not even the professionals can say what will happen for sure.
Surviving septic shock last week was a really good sign. Her liver remained mostly unchanged. We're optimistic but fearful at the same time.
Open heart surgery will be the monumental battle that will determine the outcome of her war with congenital heart disease. She's a strong fighter. She's a heart warrior. To us her name means "hearty". It comes from a Hebrew word that means "to tie together". She's certainly tied us all together in praying and hoping for her.
I've thought more about what she might think of us sharing about her like this when she's older. I hope she sees that we all came together to unite before God on her behalf. I hope I can tell her about God doing a miracle. We still want a supernatural one but it's important to remember that the CHEO staff perform miracles by natural means every day. God is sovereign over everything. Even though many of the staff here may or may not believe in Him they do not cease to be instruments in His hands that he uses to provide grace and healing.
As I write this I'm sitting in the lounge beside a dad whose thirteen year old son was just taken in for brain surgery that will last up to sixteen hours. A few days ago they operated on him for thirty hours. About a week ago everything seemed fine. A brain tumour caused rapidly increasing inter-cranial pressure and forced him into the battle of his life. Pray for Ethan and his dad Chris as well.
Last week when we were in the PICU we shared a room with Faith and her family. She’s two and a half and had a similar surgery to the one Rebekah's having. Two weeks after she went into cardiac arrest and aspirated on chocolate milk. Forty five minutes of CPR saved her life but decreased oxygen to the brain left her unable to move or see. The doctors say it's permanent. Pray for Faith and her parents Maureen and Graham.
This is a dark but wonderful place. Such a mess. There's the beauty of people coming together to help (a group in which you're included by praying and caring) contrasted with the unpleasant reality that God allows children to suffer and die. We choose to continue to believe in His kindness and goodness. After all, He's placed Rebekah in the best care she could possibly receive and surrounded her with an army of prayer warriors. Please continue to pray that He'll grant Rebekah the miracle that we've been asking for. Whether it be supernatural or natural; we will accept it.
From Nathan today:
I’m laying Rebekah's entire story out like this as a call to prayer. We want as many people as possible going to God on her behalf. We'll be inviting people to join together with us for 24 hours of fasting and prayer on January 28th. I plan to publish more details on that later. For now, here's her story.
We have two healthy children and took for granted that our third one would be the same. When the doctor referred us to a cardiologist after a routine 20 week ultrasound we remained optimistic that it was just a precaution. After a three hour sonogram they explained that our yet to be named little girl had a very complex heart that would require comprehensive surgical repair. There were so many variables that might effect when and what type. We were devastated. Everyone hopes the best for their children. Even though we wanted to meet her before giving her a name we went ahead and started calling her Rebekah before we even left the hospital. We wanted to show solidarity with her and to pray for her by name.
The doctors explained there were many possibilities when Rebekah was born ranging from immediate heart surgery to her being stable and appearing fine. We prayed for a miracle and asked our family, friends, and church to do the same. We told the doctors that if she was breathing well and her colour was okay then we wanted to hold her before they took her to the Children’s Hospital. Our time cuddling her was brief because she was born with a fever and they were concerned about her breathing. It was the first of many times that our desire to be there for her in a conventional way would go unrealized. She needed more care then we could provide.
The cardiologist came to the Neonatal Intensive Care Unit (NICU) the middle of the night to examine her heart using an ultrasound machine. I fell into a deep sleep at her bedside. He woke me around four in the morning to tell me that her heart looked much better than they anticipated from what they saw on the prenatal scans. The combination of exhaustion and elation made it feel like a dream. I was so happy. I rushed out of the hospital and got lost on my way to tell Sylvia. She had to hear it in person. The next day one doctor even suggested that it might be a miracle. I remember asking when we should get the car seat. Then her stool started getting lighter. Two types of bilirubin and her liver enzymes started to climb. Multiple scans and tests showed she had no spleen and might not have a gallbladder. They had talked to us about biliary atresia before she was born but it was such a slim chance that we didn’t really expect she would have it. The general surgeons explained that she would begin the experience liver failure if they didn’t perform major abdominal surgery very soon.
Fifteen days after she was born they spent six hours operating. Friends of ours visited and we talked about topics unrelated to what was happening to our sweet little girl. It was terrifying. When it was all over they said she did relatively well and they were cautiously optimistic about the success of the procedure. Statistics say the type of repair they performed is either fully or partially successful approximately 66% of the time. The remaining 33% fail completely and a liver transplant is required. In the days following her surgery she cleared the massive post surgical fluid shift with the help of medications and things were beginning to look promising. The cardiologists monitored her heart from the background. Weeks later she continued to need lasix and they began to be concerned that she might need heart surgery sooner than later. They said need to do a procedure called cardiac catheterization to be able to tell for sure.
Prior to December 11th she was finally weaned off of morphine and supplemental oxygen so it was very hard to consent to another procedure. If the catheterization showed that she didn’t urgently need heart surgery then hindsight would make it seem futile. The doctors insisted they needed to know. The information from ultrasound scans of her heart were not enough. Some of their differentials required immediate intervention. We finally agreed.
The test showed that they had been on the right course. Care was redirected towards helping her recover from the catheterization before getting her ready to go home. They thought we might be able to care for her ourselves until she was 4 months or 5kg. At that age and weight the statistics are much more favourable for heart surgery. We started training on how to administer medication with needles and manage a nasogastric tube to help her eat but she couldn't be weaned off morphine and wasn't able to breath again without the help supplemental oxygen. On Christmas Day her condition declined. Her demand for oxygen increased, she became increasingly agitated, and began having fevers of varying severity. They investigated thoroughly and found a blood infection, then a possible bladder infection, then a fungal infection. Her heart was getting bigger from working so hard and she wasn’t gaining weight.
She was treated with antibiotics and antifungals for several weeks. Tests seemed to show she was finally infection free but she remained agitated and continued to have low grade fevers. The infectious disease specialists attributed the signs and symptoms to her heart. The narrative changed. They said she would need heart surgery as soon as possible. It was Scheduled for the 26th of January. Today.
Last Saturday they called us at six in the morning but couldn’t tell us why. We sped to the hospital wondering if we were going there to say goodbye. When we arrived we learned that sepsis had hit hard. Twelve hours later septic shock left her on the precipice between this life and the next. On Saturday night we went to sleep unsure if she would make it through the night. She did. Then the next day and the next. Slowly they started weaning her off the life saving drugs she had needed for shock until she didn’t need them at all anymore but she was still too sick for surgery. It was cancelled on Wednesday.
As I write this I sit by her bed and type through the tears. I’m doing better today because she’s doing better but it’s still hard. So many people are praying for her. I’m laying her story like this as a call to prayer for the general public. We want as many people as possible going to God on her behalf.
Surgery could happen next week but there are some concerning things going on in the background. Attributing the low fevers she was having last week to her heart condition turned out to mask their truer cause; an infection. She’s having them again and her white cell count is rising. Pray that either they’re nothing or they find the source. Surgery might proceed either way if they’re comfortable with the risk but if she goes into it with an infection it significantly lessens her chances of making it. It’s not abdominal surgery this time. It’s open heart surgery on a heart lung bypass machine for up to 8 hours. Please pray and encourage as many other people as possible to do the same.
This is sweet, beautiful, Rebekah. She is two months old. Rebekah was born with two holes in her heart and is having difficulty with her liver. She has been in the NICU at the Children’s Hospital of Eastern Ontario for her whole, short life. Her condition is called Biliary Atresia. She has had surgery (Kasai procedure) to correct her liver issues; however, the doctors now believe she will need a liver transplant. She can not have the liver transplant until she has her heart fixed and she can not have her heart surgery until she weighs a pre-determined amount. Rebekah has had difficulty gaining weight (the reason for this is not concrete and currently under the care of a GI specialist).
Due to breathing and other health related issues she is currently on a Paediatric Bipap machine and multiple medications. These surgeries and recovery will require Rebekah to remain hospitalized for an indefinite length of time.
Rebekah’s mom and dad, Sylvia and Nathan, both members of the Canadian Armed Forces have been able to move from their current posting to a post closer to the hospital. However; this means paying rent at two houses during the last couple of months. In the next two weeks dad needs to return to work and move back ‘home’ and will be away from the family. Grandparents, Rudy and Janis have been stepping in to take care of Rebekah’s siblings so her mom and dad can be with her when needed for tests and procedures. Unfortunately, recently Rebekah’s grandmother became ill and was hospitalized and therefore, is not able to take on care of the other grandchildren at this time. Rebekah’s family needs to arrange for alternate child care for her siblings while their dad is at work and mom is at the hospital with her.
We are hoping to raise $ 15,000.00 to help cover the cost of daycare/childcare for Rebekah’s siblings while their mom Sylvia is at the hospital, the cost of gas for Rebekah’s dad to drive back and forth from town to city, and funds to cover the extra cost of rent for their ‘second’ home during Rebekah’s stay at the hospital. Any excess funds donated will be donated to a charity of the family’s choice.
Rebekah is already a miracle and we are believing with her family and trusting the Lord for another miracle in her little life. If you are led to, the family would be blessed by your willingness to give any donation.
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