On September 10, 2011, I gave birth to a beautiful 5 lb 12 oz baby girl. I chose the name Katie for her, meaning ‘pure’.
When Katie was six weeks old I took her to the local hospital for a little trouble breathing. She stayed the night there for observation. After a quiet night, the doctor came in and said he thought she was fine but was going to send her to a hospital with more facilities “just in case”. I was quite confused by this but agreed. Katie slept through the 1½ hour ambulance ride.
Once we arrived, we were taken to the children’s floor but the monitors showed a high heart rate so we were moved to the Pediatric Intensive Care Unit (ICU) step down unit ‘just in case’. Gary (my husband, Katie’s dad) arrived about this time. They said Katie was in supra-ventricular tachycardia (SVT). The nurses couldn’t get an IV started in a vein. We start hearing a drilling sound and questioned it. The horrible sound was them drilling a hole in the bone of my baby’s leg trying to gain access. They were finally able to administer the needed medicine to get her heart back into rhythm and things settled down.
Priscilla (Katie’s grandma) and Aunt Pam showed up. While Katie drank her bottle, I went downstairs to visit with my cousin who came to visit. That’s when Gary called and demanded that I get back upstairs. Life as I knew it changed at that moment.
“But now thus saith the Lord that created thee… Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the Lord thy God, the Holy One of Israel, thy Saviour…” ~ Isaiah 43:1-3b
Sunday, October 23, 2011, 9:00 pm.
When the double doors to the ICU open, I saw Gary standing there, wide eyed. “She’s not breathing”. I rushed into her room and there lie my baby, Katie. The nurse was doing chest compressions on her pale lifeless little body. I felt like I was kicked in the chest and the air from my lungs was squeezed out. The only sound that would come out was a shrieking ‘oh my God’.
Grandma kept telling me to sit down. I called my Aunt Dana to tell her that I needed her; I didn’t know what else to do.
By this time, nurses and doctors were piled into the room. I heard the drilling sounds again. I heard Katie’s sea horse toy singing every time they accidentally bumped it. While the staff desperately tried to revive my baby, Dad and I sat on the floor. He had my head cradled in his arms and he kept saying, “It’s not fair, it’s just not fair”; there were many tears and prayers flowing.
The doctors kept coming over to us, asking questions and trying to explain things to us. With a room packed with people; doctors yelling orders; commotion and panic filling the room; and the absolute shock and terror of what was happening, I couldn’t even begin to process what they were telling me. I just said “do what you have to do to save her”. One doctor came and asked if there anything she could do for us. I begged her not to let my baby die.
The ECMO (extra corporeal membrane oxygenation) team was called in. I was told that this was a heart/lung machine and it was a temporary last resort.
Once the surgeon arrived, the staff escorted us outside the door of Katie’s room to some awaiting chairs. They brought us ice water and a chaplain. I screamed that I didn’t want a chaplain. To me, this meant death. He didn’t say anything. He just stood there so I said ‘are you going to pray or something’. I figured he should make himself useful if he was just going to stand there. My thought process was not working at the time.
My Aunt Dana finally showed up and another cousin slipped in; so I finally had some of my own family by my side. I couldn’t see Katie in the room because there were so many people surrounding the bed. As they were preparing to hook her up to the ECMO machine, her heart started to beat ON ITS OWN.
This is after 1 hour and 45 minutes of constant vigorous CPR. HER HEART WAS BEATING! Everyone was shocked at this point, doctors included. It was 10:45pm
We were sent to the waiting room. Katie was unable to breathe on her own so she was put on a ventilator. She was moved to the real Pediatric ICU and got her 1st blood transfusion.
The doctor came and told us that Katie has Wolff Parkinson White Syndrome and Long QT Syndrome. In other words, her heart has 2 electrical defects. He said “it’s like hitting the lottery twice”. It was the lottery that nobody wanted.
I remember seeing her for the 1st time again. There were IV pumps everywhere. The whole bed was covered in IV pumps and in the middle of all of them was a tiny pale baby. She was on an ice blanket to help prevent brain swelling. (CPR is hard on the body). Her skin was cold and felt and looked like plastic. She was so full of fluid and didn’t even look like my baby anymore.
That night was touch and go. Gary and I were lost and scared. We were in and out until 4:00 am. We didn’t know what we were supposed to do. At 4:00 AM, we laid down on the cold floor of the waiting room and tried to rest.
Katie’s kidneys shut down. She had critical blood pressure issues. Brain scans and heart strength were uncertain. They found a hole in her heart. We were given a 70% chance that Katie would have severe brain damage. We were just numb by this time.
BUT things began to change. Her kidneys began to function, they found no damage to her eyes, her liver was functioning—damage free—and her brain scans showed good brain waves and no swelling. After all of the trauma, Katie was beating all of the odds.
I’d slip in at night and would read Katie nursery rhyme stories. Gary and I would rub our hands together and put them on her legs to try and warm her up when the nurses weren’t looking.
“And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.” ~ Matthew 17:20
Friday, October 28, 2011
She was taken back to the operating room to place her pacemaker. It was such a hard moment to let her go. I rubbed the skin on her chest, knowing it would never look the same. Then she had blood transfusion number two.
Katie’s heart got out of rhythm again after surgery so the wait was even longer. I was so glad to finally see her again. The ice blanket was gone and her skin felt so warm. Her whole chest was bandaged and a drain was coming out of it. The nurse lifted the bandage and there was a long incision down the whole length of her breastbone.
She was going to have a scar but she was here and that’s all that mattered.
“…I will never leave thee, nor forsake thee.” ~ Hebrews 13:5b
Monday, October 31, 2011
Halloween Day, all the IVs, tubes, dressings, wires, and ventilator were removed. We got to hold our baby again for the first time. It was the most amazing feeling imaginable.
Katie spent a total of 1 hour 45 min of CPR, 8 days on a ventilator, heart surgery, 2 blood transfusions, horrible shaking, screaming medication-withdrawals and thirteen days in ICU. Today she is a happy healthy 13 month old baby. She has her pacemaker, takes heart medicine every 6 hours, and has the most beautiful badge of courage running down her chest.
I don’t know what the future has in store but I DO know that God has provided us a wonderful miracle, ‘just in case’ you didn’t already know.
We have so many friends and family that have walked this journey with us. At times they even carried us.
“Call unto me, and I will answer thee, and show thee great and mighty things, which thou knowest not.” ~ Jeremiah 33:3