Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Saturday, February 2, 2013


Today, I am super excited for you to get to know Kate...super cute super hero!!!


Having your unborn child be diagnosed with a congenital heart defect is devastating. Handing your newborn over for complex open heart surgery and watching their every struggle is beyond devastating. Most of the general population is unaware of what a CHD is or the unimaginable pain it brings to a family. I'm sharing my daughter's story to help raise more awareness for the CHD community.
Kate was born on June 26, 2012 with Hypoplastic Left Heart Syndrome and an Intact Atrial Septum. She was born at 39 weeks via c-section and had no other known medical issues. She spent the first 6 days of her life in the NICU awaiting her first open heart surgery. She had a cardiac catheterization to look at her heart right after birth and stayed intubated afterwards. She also had a meconium plug, which required an upper GI. She finally was able to feel her mommy and daddy's arms around her after 5 days. She didn't feel them again for 20 days.
On July 2, Kate had her first open heart surgery, the Norwood. It was the longest day of our lives. She left my arms at 8am and we did not see her again until 7pm. Nothing can describe the sight of your baby after surgery. The tree of drugs, the monitors, the wires, the ventilator, your 6 day old baby lying there open chest. Nothing anyone tells you can prepare you for the sight. And you are completely helpless.
Kate's heart did not respond well to the surgery. She went into JET (heart rate over 210 in abnormal rhythm) with very low blood pressure. Her kidneys were not getting the blood flow they needed so she was retaining too much fluid. At 1am, her surgeon came to us and said he wanted to put her on ECMO before a possible code would happen.
ECMO involves using 2 large, hose-like, cannulas to attach to either a heart (if open chest) or neck to use gravity to drain unoxygenated blood from the body, send it through this machine that acts as your lungs to oxygenate the blood, then acts as your heart to pump it back into your body. It gives your lungs and heart a break from doing all the work to give them time to heal.
Kate was on ECMO for 5 days, but successfully weaned off, and was on the slow road to recovery. She had many complications along the way with ng feeds, weaning off the ventilator, and weaning off the iv heartmeds, but she was finally extubated on July 20th. We finally could hold our baby girl and she was even sucking a pacifier. There was even talk of moving to the step down unit very soon.
On July 25th, I had just dropped my 2 year old off for the day and was heading to the hospital when I received a call that they needed to reintubate Kate. She had gotten extremely agitated, dropped her heart rate into the 80s and was satting in the 30s. When I arrived, things were even worse...Kate had coded. After 62 minutes of compressions, she was back on ECMO. She was clinging to life, but she was still alive. They suspected that her tricuspid valve leakage was worse, which caused her cardiac output to decrease. After cardiac arrest, your child looks puffy and pale. The doctors told us we had to wait and see what damage had been done to her other organ systems.
On July 26th, Kate began having seizures. An ultrasound of her brain showed a large brain bleed on her left frontal lobe. This was caused by the lack of oxygen during CPR. She needed to get off the ECMO because it uses blood thinners, which was making her bleed worse. They were continuously monitoring her brain with EEG and weaning the ECMO. We were praying that she continued to have brain function and that her heart could handle coming off of ECMO.
Kate did manage to come off ECMO successfully again 48 hours after her code. She continued having seizures so they were concerned about brain swelling. They inserted a probe (called a Codman) into her brain to monitor her pressure. It came out a few days later and with the right mix of meds, her seizures were under control.
We spent the next few days trying to wean her down on the ventilator again, but on August 3rd, Kate coded again. Luckily she only required a few minutes of compressions. After this code, the doctors were convinced that Kate needed her Tricuspid valve repaired before she could come off the ventilator and iv heart meds.
The doctors decided the best choice was to wait until Kate reached 12 weeks of age and 5 kg weight to do her Glenn and valve repair at the same time. So we spent the rest of August on the ventilator, waiting. It was a tough balancing act of the right level of sedation, keeping her picc line infection free and working on her developmental progress.
On September 8th, Kate coded again. She went into respiratory arrest, but not cardiac arrest. She again required a few minutes of compressions. We discovered that her breathing tube had gotten clogged with her secretions. She was only getting about 10% of her pressure support. She also had some arrhythmias and episodes of dropping her heart rate and saturations during the next 48 hours. But with time, she had no more heart issues, and was cleared to have her next surgery.
On September 18th, Kate went in for her Glenn and valve repair. She was gone all day again, and had many complications that night. She went into JET again and oxygen saturations stayed in the 50-60s even on 100% oxygen and nitric. Luckily this time her blood pressure stayed up, so they gave her medicine to lower her heart rate and waited it out. Over the next few days, her heart went back into regular rhythm and required no more pacing. But her saturations would not go any higher than the 60s. On September 22nd, Kate went back into cath lab to figure out what was going on. They ended up ballooning one of her pulmonary arteries and saw her saturations jump into the 70s. We were relieved, and prayed that was the only problem and that we were on our way to recovery.
Later that night, Kate's saturations kept dipping into the 50s again and over the next 18 hours they drifted down to the 30-40s. Her surgeon came to us and told us that she needed to be put back on ECMO because she could not survive much longer with saturations this low. Her valve repair had been successful but the Glenn shunt was not working. Her pulmonary arteries were not handling the change in circulation and Kate's best chance would be to take the Glenn down and put a BT shunt back in. Her pulmonary arteries needed more time to grow before the Glenn shunt could be successful.
Kate went on ECMO for the third time on September 23rd. She stayed on for four days with a wean attempt in there. It was not successful, so Kate went into her third OHS on September 27th. They took her Glenn shunt down and replaced with a BT shunt. Back to the Norwood physiology and interstage for Kate.
Prayers were answered that Kate had little complications after this surgery. She had a minor wound infection and chylothorax, but was able to come off the ventilator on October 6 (she had been on since July 25th). Over the next few weeks, she successfully came off all iv heart meds, her sedatives and was on minimal oxygen. She progressed to full feeds via NG and was finally released from the PICU on October 26th. She spent 10 days in transitional care and was finally released from the hospital on November 6th, exactly 19 weeks after her birth!
Since Kate has been home, she has been doing great. She came off all oxygen within the first week of being home and is loving being at home with her mommy, daddy and big brother. She sleeps well at night, is gaining steady weight, is doing very well at her physical therapy, and is slowly working on her oral motor skills. She is still exclusively ng tube fed, but will be going in for a g-tube in the next month or so. She will also be going in for her pre-Glenn cath in February and her Glenn surgery in the spring. Still a long road but Kate is truly a heart warrior. For everything she has been through, she is the happiest baby and her smile will warm your heart. She is truly our miracle and we cherish every moment with her!

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