Aimee Leilani

Aimee was born on October 23 at 5:15 in the morning at Trippler Army Medical Center in Honolulu, Hawaii. She was a whopping 8 pounds 15.7 ounces and 20 inches long. She is beautiful and looked healthy, we thought. Within 24 hours after she was born the doctors came into the room and wanted to get permission to do a spinal as Aimee was having difficulty breathing and they wanted to rule out meningitis. At 7:30 AM the NICU Dr. Lovlee came in and told me they thought Aimee had a heart defect. She had started turning blue from her waist down. The doctor explained to me that they thought that her aorta may be blocked and they were sending her down to the local Women's and Children's Hospital because the pediatric cardiologist for this hospital was out of town. She returned from downtown with confirmation of a heart defect—actually, several and they were much worse than expected. Within 48 hours after birth, Aimee was on a C-141 (military cargo plane) and we were headed for San Diego Children's Hospital.

In the meantime, my mother flew in from Indiana to stay with my other two children who had just turned 2 and 3. My husband was on deployment off the coast of Korea. He was able to call me when received the Red Cross message that mother and baby girl were doing fine. It was then that I told him about the heart defect and that we were going to San Diego. He started working on his end to get there.

Aimee and I arrived that Friday morning and they whisked her off for examinations and confirmation of her defects. Dr. Lamberti was the surgeon who would be doing Aimee's surgery and, although he spoke with me briefly, he said he would wait to explain the surgical procedure to both me and my husband. My husband arrived that next afternoon, and on Sunday, Dr Lamberti explained in detail what he was planning to do during the surgery.

Aimee went into surgery on the 28th of October (her actual due date). After what seemed like millions of hours they came out and told us all went well. They repaired her ASD, VSD and took out her right subclavian artery as it was not where it was suppose to be, and was in the way of the repair needed for the aortic arch. Now Aimee was on the road to recovery. Well it was not that easy!! Aimee started having seizures about two hours post-surgery and they continued for two weeks. Even on three anti-seizure meds, she was still having breakthrough seizures.

Due to the seizures they could not close her chest, then she swelled up with fluid and they still could not close her chest. Finally after a week they were able to close her chest. We started seeing the tubes go away slowly. Then the only thing left was an IV, external pacer and the ventilator. After several unsuccessful attempts at extubating Aimee, they decided they would wait until after they did her pacemaker surgery. Yes, they came in every day and turned the external pacemaker off and every day they would turn it back on as her heart would just not beat on its own. She was in what they called complete heart block, caused by the surgery to repair her very large VSD. On November 21st she had her pacemaker placed and by the 23rd she was extubated and Dad finally got to hold her and see her beautiful little face.

At this time Dad thought it was safe to go home as his 30 days leave had been used up and he needed to return to the boys, it appeared we were out of immediate danger and we would be right behind him. Well this was not the case as now we had to get Aimee eating and Aimee's lungs were not doing good as they seemed to be very weak and kept collapsing. However one day the doctor came in to make a routine daily check and miss Aimee was laying in the bed with her nasal cannula probes blowing in her eyes and her O2 sats at 99. He decided that she really no longer needed the O2. Now we just had feeding issues. After a swallow study (where she devoured the barium) to see if she had reflux and lots of mom's attention on feeding I thought we were ready to go. It was the middle of December and I had been away almost 2 months from the boys. I went to the Navy to schedule a MEDIVAC flight back to Hawaii and was told if I did not get released by the 18th there would not be another one until after the new year. I went back to the hospital and basically told them this and that if they did not have Aimee ready to go by then we would be checking out ourselves. Well they decided that the remaining feeding issues could be handled by the doctors in Hawaii and agreed to let us go.

We were released and taken by ambulance to the Miramar Naval Air Station. We sat in the ambulance and the flight never came, due to the Santa Anna Winds. Back to the hospital we went and I was devastated, taking my baby back into the hospital when I should have been going home. There would not be another flight now until after the first of the year, I would miss Christmas with the boys, I was a total wreck. Then Dr. Lamberti said that if the Navy could not get me on a flight the next day that the doctor's association would pay for a commercial flight home for Aimee and me. That is what happened. We were home on the 19th of December and released from the hospital on the 20th after showing the doctors that I could pass a NG tube. We were home for Christmas!

Aimee is now a strong-willed, soon to be 11 year-old that is stuck in her terrible twos. She is very delayed and still does not talk. Her communication with us is very challenging as it is like a two year-old's, only she does not point at what she wants. She goes to school in a special needs self-contained class. Aimee takes no meds and is followed by her PC for her heart and by Shriners Hospital for her scoliosis. Aimee also was diagnosed with DiGeorge Syndrome at 2 weeks old.