Help for our Heart Warrior Baby Ezekiel

Friends and family, for months we have been hesitant to inform everyone our reality as it was very difficult to accept. On behalf of Stevie, I would like to take a moment to tell you only the beginning of our baby Ezekiel's  story and what he will go through when he enters this world in just a few weeks. At our 19 week anatomy ultrasound we were informed that he has a pretty significant congenital heart defect and would most likely need open heart surgery after he is born. We were then referred to Phoenix Children's Cardiology for a fetal echocardiogram that would tell us exactly what is wrong with his heart. Praying that it was just a mistake in the initial diagnoses the Cardiologist told us that our baby has Dextro-Transposition of the Great Arteries meaning the two main arteries carrying blood out of the heart – the main pulmonary artery and the aorta – are switched in position, or “transposed.” Therefore, oxygen-poor blood circulates through the right side of the heart and back to the body without passing through the lungs and oxygen-rich blood circulates through the left side of the heart and directly back into the lungs without being circulated to the rest of the body. A condition that will require an arterial switch operation and fatal if untreated. The cardiologist explained to us the plans that would need to take place in order to care for his diagnosis. She explained I will need to transfer my care to Phoenix at 35 weeks of pregnancy where they have people who specialize in his condition to receive the best outcome of care. I will be induced at 39 weeks and deliver the baby at St. Josephs Hospital, 6 min away from Phoenix Children's Hospital where baby will be transported by helicopter once stabilized after birth. Babies with this condition generally come out of the womb looking blue due to the lack of oxygen that the body is getting and in order to stabilize his oxygen levels he will need an IV that will administer Prostaglandin, a medication to help support mixing of the blood in the heart. He will also need a cardiac catheterization to undergo a balloon atrial septostomy that will essentially create a hole in the top two chambers of the heart, to also help mixing of the blood. After this is done he will be transported to the CVICU where we will wait for surgery, approximately a week after birth and then 2-4 weeks after for his recovery. We would also like you to know that there is a study in place that will be collecting data from his echocardiograms and oxygen levels until we are discharged to better understand babies with TGA. 

I am now 36 weeks pregnant and as it gets closer the reality is sinking in more than ever. Aside from everything we have to go through the pandemic has had a huge impact on what we initially expected. We are trying our best to be strong parents but it does not change the fact that after delivery I wont be able to have my own support system, as Stevie will be following the baby to PCH immediately.   We are only allowed one parent at bedside in the CVICU. We no longer have a place to stay near the hospitals as the Ronald McDonald house is not accepting new patients. Stevie has had to give up his full time position in order to travel back and forth from Tucson to be here for me and the baby but still support our family. 

This has been an emotional and financial hardship and we are asking for any help we can get to support baby Ezekiel. From cents to dollars, any resources or advice you have to offer we are accepting anything with so much gratitude. Your help will contribute to food expenses during our hospital stay, help with our bills,  a place to stay and so much more. We thank anyone who has taken the time to read this. God bless us all with everything going on in this world. We are praying daily for our baby boy and ask if you will do the same. 

Thank You Sincerely, 
Amber and Stevie