As told by his mother Lara.
Evan and Blake were conceived after several years of infertility treatments and miscarriages. They were wanted more than anything. Unfortunately, early into my pregnancy with them, we discovered that I had an incompetent, or weak, cervix. My body was not built for pregnancy and certainly not carrying multiples. I was on placed on home bed rest at 16 weeks, but that did not help. I had an emergency cerclage, a stitch, placed in my cervix at 18 weeks in the hopes that it would help me carry the boys longer. I was placed on hospital bed rest at 21 weeks. Evan and Blake were born on November 29, 2011 at 24 weeks and 4 days gestation. At 1.5 lbs a piece, they were given a 40% chance of survival.
Blake Andrew left this earth only 10 days after he entered it. His life, although brief, has made an everlasting impact on my husband, Jim, and me, and so many others.
Blake was born at 1:21 AM on Tuesday, November 29th, 2011, 1 minute after his twin brother, Evan. At only 1 lb. 9 oz. and 11.8 inches long, he was a fighter. Blake came out of the womb breathing and crying, even though he was incredibly small and fragile. Evan was smaller than Blake and born in distress, not breathing. We thought for sure that Blake was going to be the stronger of our two boys, but when a child is born that early, there is just no telling how things will go.
After his birth, Blake was immediately placed on the oscillating ventilator to assist with his breathing. At that early stage, the ventilator was what was keeping him alive. He could not do any breathing on his own. The oscillating ventilator is compared to a jet engine because of the noise it produces, and also because it pushes air into a baby’s lungs at such force that their entire body shakes from the pressure.
The day after Blake was born, on November 30, 2011; Blake developed a pneumothorax, or trapped air in the chest cavity due to a small hole in one of his lungs. The doctors told us that often the oscillating ventilator can cause more harm than good to a baby’s lungs, and that was the case for Blake. The doctor placed a chest tube in and told us that it would relieve the pressure and the hole would heal. The following day, on December 1, 2011; Blake developed another pneumothorax in his other lung. They put a second chest tube in on that side to relieve the pressure.
On December 4th, 2011, we were told that Blake had a PDA, Patent Ductus Arteriosis, an open duct in his heart that was allowing blood to enter his lungs. Blake’s heart rate and respirations had become increasingly unstable, which made the doctor suspect that he had one. A PDA is very common in babies born as early as Blake was. A PDA prevents the lungs from being able to mature and makes their condition worse. The doctors told us that they would give him medication in the hopes that it would help it close. If not, they would have to perform surgery to close it. That same day, Blake began to show signs of an infection and was put on antibiotics. He also had his first head scan that day, which is standard practice for all micro-preemies when they’re 5 days old.
Later on the evening of December 4th, Jim and I received a call at home from one of the neonatologists. He informed us Blake’s head scan showed two Intra-Ventricular Hemorrhages, or IVH’s. An IVH is a brain bleed. Blake had the two most severe types of IVH’s that exist. They rate IVH’s from a grade 1, least severe, to a grade 4, most severe. Blake had a grade 4 bleed on one side of his brain and a grade 3 bleed on the other side of his brain. We were very saddened by this news, but the doctor told us that at that time we would just watch Blake to see what happened. Jim and I did not understand the severity of Blake’s bleeds until several days later.
Over the next few days, Blake became increasingly unstable. Jim and I were no longer allowed to touch him. The nurses taking care of Blake had to get in and out of his incubator as quickly as possible to prevent him from dropping his respirations and heart rate for too long. The stress of all of Blake’s medical conditions began to take their toll on his tiny little body.
On Wednesday, December 7th, 2011, I went to the NICU that afternoon to visit the boys. I walked in on the neonatologist speaking with some nurses and other staff, all gathered around Blake’s bed. I could tell it was serious and picked up bits and pieces of the discussion about Blake’s brain bleeds. My heart sank into my stomach. I knew what was coming. The doctor pulled me aside and began to discuss with me how Blake’s condition was becoming more dire. He showed me his head scans and pointed out how the bleeding in his brain was almost entirely throughout both sides. He explained that Blake would not recover from this. Then he told me something that no parent wants to ever hear. “You and your husband need to discuss whether or not you want us to continue or discontinue his life support.” I stood there in shock. I knew that this was a possibility with micro-preemies, but I thought we were different. I thought our boys would pull through and make it without any complications. I left the hospital in a daze.
When I got home that afternoon, Jim and I began to talk about what I was told by the doctor. We began to try to rationalize it and think about what all of this meant for Blake. We thought he could still pull through this complication. We were in denial about what was happening.
On the night of December 7th, Jim and I went back to the NICU. We spoke with another neonatologist, one that had been treating Blake since he was born. She sat down with us and spoke to us about what having a grade 4 and grade 3 IVH meant for Blake. She told us that Blake would more than likely never breathe on his own. He would never be able to eat without a feeding tube. Most importantly, Blake would not be able to communicate with the people around him, nor would he understand his surroundings. The fact that Blake would live in a vegetative state was what hit Jim and I the hardest. We were in shock. The doctor again reiterated that we should consider removing support for Blake.
The next several days are a blur to me. Jim and I had hours and hours of discussions about what we should do. We went back and forth about so many things. However, we just kept coming back to what the doctors all were telling us about Blake’s quality of life. Jim and I had both told each other previously that if we were to individually get into an accident and there was no chance of recovering, that neither of us would want to be kept alive by artificial means. We had to use this same rationale when discussing Blake’s care.
Jim and I made the decision that NO parent should ever have to make. We told the doctors that we wanted to remove life support for Blake. We did not want him to have to suffer any more than he already had during his short time on this earth.
On Thursday, December 8th, 2011, we had Blake baptized by the hospital chaplain.
On Friday, December 9th, 2011, Jim and I went to the hospital to say our goodbyes. The NICU staff was incredibly compassionate and caring throughout the process. Blake was taken out of his incubator and wrapped in many blankets. They kept him on the ventilator, but turned all of the monitors off so that we would not hear any beeping. I held Blake for the very first time that day. I was so happy to be finally able to hold my baby but so incredibly sad to know it would also be my last time to hold him. I held him and spoke to him. I told him how much I loved him. How much he was wanted. He opened his eyes and looked at me as I talked to him. Jim held Blake next. We took turns holding him. The nurse took our pictures. I didn’t really want pictures to document such a horrible time, but I knew they were important. I knew that I would want them later down the road. When we were ready, we told them. The medical staff came in and discontinued Blake’s ventilator as I held him. Blake’s lungs stopped working within a matter of 5 seconds. He did not suffer. I told him it was okay to go. He did not have to fight any more. He put up a good fight for long enough.
After all of this, the staff moved the three of us into a private room in the back of Blake’s NICU room. We were allowed to continue to take turns holding Blake. The doctor kept coming in and out to check Blake’s heartbeat. It takes a while for the heart to officially stop beating even after a person’s lungs stop working. At 6:05 PM on Friday, December 9th, 2011, Blake was gone.
Jim and I sat there holding Blake for several hours. We couldn’t believe that he was gone. A child we had wanted and longed for before he was even conceived. There were so many hopes and dreams that we had for him and now they were no more. Why? Why? Why? Why, did this have to happen to us?
After several hours of holding Blake, we were able to do a few more things with him before we had to let him go. It is the hospital’s policy that they allow the parents of a deceased child in the NICU to care for the child after his passing. I was able to give Blake a bath and dress him in a tiny outfit made for this occasion. We took more pictures and held him some more. Eventually, we knew we had to let him go. Of course, neither Jim nor I wanted to let Blake go because we knew we would never see him again, but we knew it was going to have to happen. We handed Blake over to the nurse. She told us that she would make a plaster mold of his hand and foot and put that, along with the clothing and other keepsakes, in a memory box that the hospital provides to all parents after a child passes in the NICU. The way in which everything was handled that day, especially by Blake’s nurse, will forever stick with me. They were able to provide us some joy, however small, on such a devastatingly sad occasion.
After Blake passed, Jim and I looked for answers about how Blake’s condition went from bad to worse so quickly. Through research, we discovered that Blake’s pnemothoraces, holes in his lungs, were what more than likely caused his IVH’s, brain bleeds. When the air escaped through the holes in his lungs, it caused his blood pressure to spike and thus caused the brain bleeds. We also learned that all three of his medical conditions, pneumothoraces, PDA (heart) and IVH’s, were feeding off of one another, so to speak. He wouldn’t have been able to recover because each one of these conditions was impacting the others.
The following few days after Blake’s passing were spent making arrangements. We had Blake cremated. His ashes sit next to his picture in our living room. We make a conscious effort to keep his memory alive. Evan will know that he had a twin brother that fought a good fight before going home. He will forever be a part of our family.
I want to let everyone know about what a brave and strong little boy Blake was. He is no less of a person because he did not make it and Evan did. He fought as long as his little body could. His spirit and determination were extraordinary; it was his body that failed him.
You are forever in our hearts sweet boy, Blake. We will love you until we meet again.
“How very softly you tiptoed into our world. Almost silently, only a moment you stayed. But what an imprint your footprints have left on our hearts.”
Read more from Lara on her blog Raising Our Warrior.