I am sitting here in the Pediatric Intensive Care Unit at Randall Children's with Andrew and Zoe... waiting. What was supposed to be a simple procedure and overnight hospital stay has turned in to so much more. I don't even know where to begin...
On Thursday, June 21st - Andrew and I woke up to our alarms at 5am. We packed up Zoe and checked in for her surgery at 6:15am. The procedure started at 8:30am and she was finished by 9:15am. We were amazed at how short it took to complete. They took us back to be with her in the recovery room and she was wide awake, making cute faces and breathing all on her own.
Zoe was so happy to see her Daddy and hear his voice. Her eyes lit up when she saw his familiar face.
We were then taken up to room 624, where we settled in for what was supposed to be only one night. Our nurse Amy and CNA Jane were super sweet and accommodating.
Nana Armitage & Grandma Milne came up with Lulu to see Miss Zoe. Andrew and I are so lucky to have mom's that love each other. Those two are trouble together.
PEG (Percutaneous Endoscopic Gastrostomy) Tube
Feedings through her new tube have been running without any problems
All day after her procedure, Zoe was constantly crying and fussy. She seemed more uncomfortable than expected, especially because the nurses tried Tylenol, Morphine and Oxycodone. At about 3:45pm, our nurse Amy took her temperature and she had a fever of 101.4. This is when we realized that something wasn't right. They ran a CBC, blood culture and urine culture to look for infection. Zoe was then given Tylenol and Oxycodone every 4-6 hours and the highest her fever reached was 102.
From about 6:45 to 7:15am on Friday morning, Zoe had three seizures. They gave her Ativan to quickly stop the seizures, which also made her very sleepy.
The pediatric team talked with the Neurologist and decided that it would be very rare for her seizures to be related to the fever and they wanted to do an MRI, MRA, Spinal Tap and EEG.
At about noon, Zoe had another seizure in the middle of her EEG getting set up. This time, the seizure lasted 6 minutes long.
Taking Zoe down to MRI
We then met with Dr. Leon, the Anesthesiologist who would be doing the sedation for her MRI. Following the MRI, the plan was to do the spinal tap while she was still sedated.
After only capturing the first 2 series of images, Zoe's O2 sats kept dropping and her heart was out of rhythm, also known as heart block. They had to intubate her and stop the MRI. She was then transported up to the PICU, where she had many small seizures all throughout the night.
After arriving in the PICU
This morning, Zoe made it through the entire MRI and was able to have the spinal tap done as well. The spinal tap fluid came back negative of any infection, but the MRI showed three noticeable spots. Two larger spots on the right side of her brain and one smaller spot on the left side.
The larger picture on the left shows three spots on her brain which are shown in white.
Our team, consisting of an Intensivist, Neurologist, Hematologist, Infectious Disease Specialist and Cardiologist all met together and came to the conclusion that from the findings on her MRI, Zoe had a stroke very recently, which is the cause of her seizures. The stroke was most likely the result of a blood clot, as she is considerably susceptible with her congenital heart disease. They're plan is to monitor a 24-hour EEG tonight and hopefully be able to extubate her tomorrow morning. They have also started her on anti-seizure medication called Phenobarbital and an anticoagulant to help reduce the chance of any further blood clotting.
This was taken right before we left this evening. Her head is wrapped to secure all of the electrodes on her scalp.
These last few days have been exhausting, emotionally and physically. Being back in the PICU is almost more difficult than the first time we were there after her heart surgery. Her condition is hardly comparable, but our love for her is so much more deep and life altering. When she was in the PICU after her heart surgery, we had barely held her and everything was so new. We loved her dearly then, but now... after caring for her 24/7, feeding her, seeing her smile, hearing her coos and cries... watching her grow, we are head over heels in love with this tiny little human. Andrew and I have bonded with Zoe and the feeling is so much more different as we stand at her bedside, because we want so badly to see her eyes light up and her little tongue stick out. We miss her grunts and the way she sucks on her fingers and pulls at her ears. We miss our Zoe.
When Zoe had her first seizure, I was simply rocking her in my arms. She was fussy and I was singing to her. All of a sudden I noticed her left fingers and arm thrusting back and forth, along with the left side of her head. In that moment, I was terrified. That is something no mother ever wants to see their child have to go through. That seizure was the first of many and I have felt more and more helpless with each one. Knowing that my 2 month old daughter, who has undergone open heart surgery, infection, five times of general anesthesia, countless needle pokes, seizures and a stroke... I am beyond amazed at her strength. Not only is her body tough, but so is her spirit. My dad said something today that really changed my perspective. He said that Zoe was sent from God to teach all of us. I believe that is true and that I have already learned more about life and myself in these past two months than I have in all my 25 years. Zoe is special that way. She has taught me everything from faith and unconditional love to sacrifice and the gift of Christ's atonement.
I had a moment today of weakness. I was feeling the why's and why me's... why us... why Zoe? I realized that it is that very weakness that Zoe was brought here to strengthen. I'm nowhere near perfect and none of us are, but when I look into those beautiful brown eyes and hold her warm little body close to mine, I know without a doubt that she is the closest to perfection I will ever know on this earth and in this life.
Bishop Jaussi, Andrew and my Dad gave me a blessing last night. Two things that I distinctly remember Bishop Jaussi mentioning in the blessing were that I would have strength and that Zoe was surrounded by angels watching over her. Those were things I really needed to hear because at times, I question my ability to be everything that Zoe needs. The reality is that I can't do it alone. I'm not meant to do it alone. My Heavenly Father knows this. He has surrounded Zoe with countless angels... her sister Londyn, extended family members, friends, church members, doctors, nurses and more along the way on this journey of hers.
Yesterday, as Andrew was referring to Zoe, he said "Half a heart, full of love." I cannot think of a more perfect description for little Miss Zoe. She may have a heart defect, but that doesn't stop her from being one of the greatest blessings in our lives.
Thank you for all of your comments, emails and especially all of the prayers. We have felt your love and support..
Reading these words brings back so much fear and heartache. My heart breaks for that mother. I remember vividly the hope and excitement that I felt when we went in for that procedure... and then the terror that was felt when I held my baby as she endured those first seizures. What breaks my heart more is to know the rest of that baby's story... and how it ended. This particular event showed us just how much of a fighter Zoe was in this life. She had survived open heart surgery at 2 days old, a sternal wound infection AND a stroke. We were able to take her home just a week after that traumatic event. More meds were added to her regimen, including the heparin shots that Andrew and I dreaded giving her every morning and night. We were also sent home with twice as many doctors and appointments, but we did it. She did it. She fought hard for as long as she possibly could. The hardest part about the many first anniversaries we will experience this year is that an entire year is passing by without her and our life with her here is getting further and further away. Every day, I take tiny moments to consciously remember her smell, the sounds she would make, how perfect her tiny nose was, the way I used to hold and kiss her hands, how soft her feet felt when I rubbed them. I know that if I don't make the effort, I will lose those memories. The thought of losing those raw moments in my memory of how she felt in my arms or how her eyes looked at me with so much hope and wisdom... is my biggest fear. I pray that we will always remember what it felt like when she was here with us, touching our lives and others.
I miss you so much sweet girl.