On March 21st, 2022 we found out we were pregnant with our rainbow baby, EZ Matthew Estrada. After 2 ectopic pregnancies, we were finally going to be able to hold a baby earth side. My husband Xavier and I were so excited to complete our family with our 5th boy (2nd son together).
In July I went into preterm labor at 24 weeks. I received magnesium and steroids to help our sweet boy's development in case he were to come that early. After 3 days + no sign of labor, we were able to go home.
At around 30 weeks, I began feeling uncomfortable. My stomach felt like it was so full and I looked like I was full-term. My doctor suggested getting an ultrasound to see how big EZ was measuring. I thought nothing of this but scheduled and attended our ultrasound on September 23rd. Afterward, I received a call from my OB suspecting that I had polyhydramnios which was being caused by a blockage in EZ’s intestines. We were immediately referred to a specialist to confirm the diagnosis. The following week we were given EZ’s diagnosis - Duodenal Atresia. We were informed this was no big deal + we were going to do genetic testing to rule out any other diagnosis that is usually related to Duodenal Atresia. We were referred to the U of I and results came back negative for further diagnosis. All we had to worry about was EZ’s Duodenal Atresia.
The specialist felt it best that I be cared for by the U of I so we could ensure EZ was delivered at the U + would be able to receive his necessary surgery shortly after birth and we could remain in the same hospital together. We set an induction date - Halloween. We were so excited to have an October baby. EZ was due November 21st but it was so special to be able to hold on to him for an extra 3 weeks.
October 17th was a normal day - I took our son to his football game, made dinner, got the kids ready for bed, etc. As soon as our 4 year old finally fell asleep I stood up and my water broke! This had never happened to me before! My husband quickly rushed to grab our things + our two sons to drop them off with grandma. It all felt so chaotic. We live an hour from Iowa City, so the entire ride I was contemplating if we would make it or if we would have to stop in Cedar Rapids. I called my OB and updated her on my status. She reassured me to stay calm and not to risk driving further if I didn’t think I would be able to make it. She reminded me that I know my body better than anyone else. Almost immediately after dropping our kids off in Center Point, I told my husband to go to St. Lukes - I wasn’t going to make it to Iowa City.
EZ Matthew Estrada was born at 11:52 PM on October 17th, 2022. He was 4 pounds 5 ounces and was 18.5 inches long. He had completed our family. Our hearts were full and that infinite love set in right from the start. The first time I saw him, it was all worth it. The care team immediately placed a tube down to his stomach to help release any fluid that was built up in his stomach due to the Duodenal Atresia and off he went to the NICU. The next day was really difficult. EZ was being transferred to the U of I for his care and I was left at St Lukes to recover from my C Section. My heart ached for him but I was so grateful my husband was with him and never left his side. I was able to be released the next day and went straight to see my baby boy.
EZ’s surgery was completed on October 20th; he did amazing! He came off of the ventilator well and was still sucking away at his pacifier like a pro. We were finally out of the woods + we were told we would be discharged as soon as we were able to see that his stomach was working. Two days later we were told he had pulmonary hypertension. This wasn’t uncommon in babies premature babies like EZ and the PDA in his heart was still open. He would begin medication to help close his PDA and Nitric Oxide to help with the pulmonary hypertension. Unfortunately this treatment wasn't successful.
On October 28th, EZ was moved to a more serious bay of the NICU where they were able to administer a medication that usually helped reduce hypertension + then they would follow up with an echo several days after.
On Halloween I was so excited to go see him. We had his first Halloween outfit ready, the hospital had his first Halloween costume ready - it was going to be a perfect day! We walked in that morning to receive the news that the pressure in his chest had not improved and he would now be receiving the medicine via a ventilator. This crushed me. I lost a brother in 2008 at 9 months old to sepsis and to see EZ with a ventilator induced serious PTSD. The doctors hoped it wouldn’t be for long and so we prayed. Days went by without any change even while on the ventilator. The doctors told us we would be doing genetic testing to better understand why EZ had persistent pulmonary hypertension, so we sent in samples from EZ, my husband, and me. Our results would be back in about two weeks.
November 15th was an ordinary day. I dropped our other boys off at school and went to the NICU to spend the day with EZ - my new normal. He was still on the ventilator, still having pressure in his chest, and at this point was on stress management, so I hadn’t seen his little eyes and ears in what felt like forever.
By the end of the day the doctor walked in - she wanted to talk with me. She told me she was starting to get worried, the worst words you ever want to hear come out of a doctor's mouth. She explained that she thought EZ had Alveolar Capillary Dysplasia. I immediately asked what that was and how we could treat it. She told me there was no treatment for it. It was fatal. ACD is a rare genetic disorder of the lungs and how they are formed, leaving them unable to oxygenate the body appropriately. This genetic disorder has only been found in less than 300 kids in the whole world. My heart sank to my stomach, I felt like I was going to pass out. This whole time I had been waiting for a change in his pressures, for improvement, + eventually a discharge home from the hospital. I never realized that this could be something he couldn’t recover from. The doctor told me that it was time to have my husband come to the hospital so we could all speak about our options as we wait for genetic testing to come back and confirm whether or not EZ did in fact have ACD. That call to my husband was the worst call I have ever had to make. He, of course, immediately left work and drove to the hospital to meet me.
The next day we had a care conference, both of our moms joined us so we could have extra ears in case we missed something or didn’t hear it all the way through. The whole morning I remained optimistic, believing, ‘He can get a lung transplant, my baby will be okay.’ I was really naive. I didn’t realize how much went into a lung transplant and how much EZ would have to endure to receive a transplant. Outside of what he would need to go through, lungs are a hard organ to receive. His chances of survival after the lung transplant were not favorable and he would need another transplant once he turned five. I was crushed. My husband and I cried so many tears, it felt like we could’ve filled a pond. I couldn’t believe that this was happening to our son. Our last option before receiving genetic testing results was to start an experimental medication to hopefully reduce the pressures in EZ’s chest. And so we did.
The medical staff started him on the experimental medication and we began to pray harder than we ever had. I prayed to anyone that was listening. I tried to speak it into existence - I tried everything.
On November 21st, we were told genetic results were in and were taken to a conference room to be told that EZ did have ACD. Our sweet boy had something that we weren’t able to fix. We were going to lose him. I remember asking how long we would have with him. The answer… ‘maybe a couple weeks’. My husband and I decided we did want him suffering any longer. Our oldest son's birthday was November 25th + we didn’t want to remove the ventilator on that day, so we decided we would on Saturday the 26th. His brothers hadn’t even gotten to meet him yet, how could this be happening? He had no idea all of the people that loved him.
We spent the next couple of days giving him all we had. EZ was baptized, my amazing friend came and took newborn photos of him, he met his family that had patiently waited to be able to meet him. Our 4 sons came up to the NICU with our moms. We explained to them that we have been waiting to get EZ better, but that what he has the doctors aren’t able to fix. We gave them the option to meet EZ if they wanted to - all four boys said yes! There were a lot of tears, a lot of questions, but finally I had all five of our boys in one room and our family of seven was all together. We took our first and only family picture. They were all able to touch their brother and kiss him. My heart was so full but breaking all at the same time. That night they left, we spent a little bit more time with EZ and decided it was time to go back to our hotel for the night- tomorrow was Thanksgiving and we would be staying at the hospital spending it with him.
The next morning I received the worst call. EZ’s doctor told me he had a very hard night and it was continuing throughout the morning. Today may have to be the day to remove the ventilator. After that, it was all a blur. I called my mom + Xavier’s mom. They had just gotten to the hotel with Thanksgiving food for us. It happened so quickly. We got to the hospital and I saw my baby - he was not himself anymore. I knew in my mind it was time, but my heart wanted to scream. The doctors told us we would need to remove the ventilator that day because they couldn’t guarantee we would be able to keep him from passing without us there on the 25th. They knew how much we didn’t want him to leave us on his brother's birthday.
We made the decision - it would be Thanksgiving day, November 24th. Our family lined the hospital hallway by EZ’s room. Everyone came to meet him and fill the room with love. We were taken to the Children’s Hospital where we had a whole level to ourselves. They brought in a bed that we could lay with EZ in. I will never be able to explain the feeling of deep intense pain when they told us it was time to remove the ventilator. I felt the pain in my deepest core. I couldn’t believe this was real life. We sat there and rubbed EZ’s hands, feet, head, anything we could. We kissed him, snuggled him, + told him how loved he was. All of a sudden, the sun came out of the clouds and shined right on our sweet rainbow baby, and in the moment he was gone. At 2:38 PM our sweet boy joined all of our guardian angels. I know he felt the love in that room that day. He had his whole family with him- aunts, uncles, grandparents, great-grandparents, even great-great-grandparents. He was so incredibly loved.
We were told about No Foot Too Small through many friends and family members. I figured I would take a peak at the Facebook page and see what it was about. I can’t explain the relief in my heart of knowing I’m not alone. I’m not the only one who left the hospital without my baby. I’ve been given a chance to honor and remember him. I was even found by another mom here in Iowa who had a child diagnosed with ACD as well. I’m so grateful for the community of strong and powerful women and the ability we all have to relate to one another in our grief + celebrate our angels together.
Taylor Estrada
IN HONOR AND CELEBRATION OF EZ, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE ESTRADA FAMILY, THANK YOU FOR YOUR GIFT.
