Dedication: I would like to dedicate this book to my sweet "Baby B," Sawyer. Although you are no longer here on earth with us, I know you are still here with us in spirit. Please continue to look over your dad, brothers, and your little sister. We love and miss you, every single day.
In 2020, I became pregnant with twin boys! My husband, 10 year old son, and I were so excited to complete our family. We had to get two of everything, but we were so ready to add these two boys to our clan. I was 20 weeks and I had an anatomy scan at one of our states top hospitals. I was considered high risk, because I am a type 1 diabetic, which is why I was needing an anatomy scan done. At that appointment, we learned that our precious “Twin B” had a rare malformation called Congenital Pulmonary Airway Malformation (CPAM.) We were shocked, scared, sad, hurt, and didn’t know how to process this news. Our MFM gave us all the information she had on this malformation, and warned us of the good, bad, and ugly things that can come along with it. We had hope, as this malformation isn’t necessarily common, but the survival rate wasn’t as scary as it could be. So, we had hope.
After that appointment, I had to be seen at the top hospital in my state, to have tests and ultrasounds done a few times a week, to keep an eye on our sweet Baby B. We were still staying hopeful. I reached 28 weeks, and I was at home with my husband and our 10 year old when I started feeling contractions. I had called my dad to see if he could come pick up our son, so we could go to the hospital to get checked out. As soon as our son was picked up, we headed to the nearest hospital. I was indeed having contractions, and the hospital sent me to our top hospital. After the 2 hour ambulance ride, I was getting checked out by all the nurses and getting IVs put in my arm, COVID test taken, and answering what seemed like a million questions. It was then, when they told me that I needed to stay at the hospital until the babies were delivered. They gave me a medication to stop the contractions.
Nearly a week went by, and we started to notice I wasn’t urinating enough. They decided to give me a kidney biopsy and thats when they discovered that I had severe preeclampsia and I needed to have our boys delivered as soon as possible. I was only 29 weeks, and I was terrified. I was thinking about all the things that could go wrong, with such preemie babies. My husband and I were taken down to the the OR and prepped for our c-section. It seemed like hours had passed by. The nurse I had throughout my stay, was holding my hand on the other side of the curtain. She rubbed my hand with her thumb, letting me know everything that was happening. I don’t know if I would have survived that c-section without her. Our sweet baby A was born, and we instantly heard his squeak of a cry. I felt a bit of relief. They took him into the other room to start working on him, as he was only 2lb 11oz. Moments later, the nurse told me that our precious baby B was out. We waited for a cry, and finally we heard his little squeak. Both boys were taken to the room next door, and were getting hooked up to machines. The doctor continued to close me up, and when I was done, they brought me and my husband in to see our sweet babies. Right away, they warned us that our baby B was worse off than they originally thought. Nurses took pictures of both boys, and pictures of us with them, I am thankful everyday for that.
They ended up taking our boys to a more equipped NICU unit, which was only a few blocks away from the hospital we were at. We had to stay behind until I was able to walk. Until we got a phone call from the other hospital the boys were at. They said that we needed to get over there, they did not know if our baby B was going to make it. I screamed. I cried. I yelled for a nurse to find a way for us to get over there. An ambulance finally came for us and we headed over there to see our boys. The whole ambulance ride there, my nurse said the Hail Mary over and over to me. She held my hand the entire ride over. When we got there, we got brought to where the boys were. They were both in incubators, hooked up to so many machines. I thought our baby B looked great. He had dark hair, and to me looked perfect. They told us that the mass in lungs was much bigger than they originally thought it was. They told us that they didn’t know if he was strong enough for surgery. We stayed with the boys for a few hours and they told us we needed to go back to our hospital so I could rest and heal. They told us they would call us with any changes. It’s as so hard leaving our babies.
We got back to the hospital and I was a mess. I finally fell asleep and all of a sudden the phone started ringing. My heart dropped. I answered the phone and it was the other hospital telling us that we need to get over there right away, it was time to say goodbye. I screamed. I woke my husband up with my screams. I couldn’t lose my baby boy. I thought this was a dream.. The nurse got the same ambulance for us, and we headed over there. I cried the entire way. I remember saying “no, no, no” over and over again. I couldn’t believe this was happening to us.
We got there and went straight to the NICU where our boys were. I looked in Baby B’s incubator and was shocked, I didn’t recognize the sweet baby that was in there. He looked so different than what I saw hours prior. He was a different color. He his stomach was rising so high. I was losing him. The doctors and nurses told us we need to decide what to do. They told us that they fear he wouldn’t even make it down to the OR for surgery. Thats when we decided we just wanted to be with him. I needed to hold my baby. I needed to say goodbye to him in person, not while he was being wheeled to the OR. They got me a chair to sit in, and they handed me my baby boy. Dad and I held his fingers. I was trying to memorize everything about our baby, so I would never forget. Nurses took pictures for us. We cried. We prayed. We let him know how much we love him. And then, he was gone. My baby was gone, he was now an angel.
We had to stay strong for our survivor twin. He was over all doing very well. He ended up having to stay in the NICU for a little over a month, and then we got to bring him home at 4lbs. He is now 1.5 and is doing amazing. He is our warrior.
Now, skip ahead to 2023. I am pregnant with our final baby. We went to our 20 week anatomy scan, and we got horrible news. Again. This baby, which we found out was a girl, also has a malformation. This one, is extremely rare. Vein of Galen Malformation (VOGM) this one affects the brain and the heart, were as our twin B’s affected his lungs and heart. This one, no doctors in our state or around us have worked with it. They told us the only option for our sweet girl is to contact Boston. So thats what I did. I needed to make sure I did everything I possible could, for our baby girl. I was not going to give up. No matter what the outcome was going to be, I needed to know that I did everything I could to try and save her.
I am currently 22 weeks pregnant now, and Boston has just received our images from my MRI, Echo, and ultrasounds. The top pediatric in Boston has worked with VOGM patients for along time, and is very familiar with this rare malformation. I am currently waiting for him to tell me whether our baby girl is a candidate for a trail being done for VOGM. This is potentially the only thing that can save her. An in utero surgery on our baby. For now, we wait until we hear what they have to say…
I can’t lose another baby.