Millie
 On December 2, 1997, I gave birth to my first child. My pregnancy was normal with no complications, but Millie did take her time coming into this world ! She was born two weeks past her due date. Labor was long and painful, but when it was all over, I had a beautiful baby girl who weighed 8 pounds 13 ounces.
We left the hospital the next day, and spent Christmas at home. Millie was jaundiced, and home health care nurses provided by our HMO kept a close eye on her. The jaundice went away on it's own.
Then one Friday night, Millie began to nurse poorly. She would cry to be fed but would hardly eat. The poor feeding continued all weekend. By Sunday night I was very concerned about her. She woke up every hour all night long demanding food, but when I offered her my breast she would nurse for 2 or 3 seconds and then pull away and cry. We decided that we would call our pediatrician first thing in the morning.
On Monday morning we found the check-off sheet the hospital had given us that listed reasons to call the doctor. The list said if the baby was taking more than 70 breaths per minute we should bring her to the doctor. We counted Millie's breaths and she was taking up to 90 breaths per minute. We also realized that Millie went the entire night without a dirty diaper..
So we called and made an appointment with Millie's pediatrician for 1:30 that afternoon. I figured Millie had a cold or an ear infection or something along that line that was stuffing her up and making it hard for her to eat and breath.
The pediatrician looked at Millie and told us she did not like the way she was breathing and sent us to the lab to get a chest X-ray and an EKG. We did not know why the doctor wanted these tests and we were a little nervous but not as much as we should have been…
After her pediatrician viewed the chest X-ray she told us that Millie had an enlarged heart. But she was so calm about it that we were not too worried by it. Then we were hit by the bombshell! The doctor said that an ambulance would come to take her to the hospital and she would be admitted to the I.C.U.
I started to cry. I kept thinking to myself that they are going to take my sweet little baby away. Her doctor tried to reassure me that there may be nothing wrong but she did not want to take any chances.
The hospital sent over their special neonatal critical care transport team. They tried three times to get an I.V. and failed they also tried three times to get a blood sugar reading and failed. For each failed procedure Millie had to get poked with a needle. It bothered me to see Millie getting poked so many times. They also could not get a blood pressure reading from her legs and they could not feel a femoral pulse.
They put our baby in an isolette and wheeled her out of the pediatrician’s office and down to hallway to the main entrance , past all of the people in the waiting room. I looked down at Millie while she was being wheeled out…she looked so small and helpless.
I rode in the ambulance (it was a 30 mile trip and during rush hour) and followed Millie and the ambulance crew upstairs to the I.C.U. I was then told that I had to wait outside while they got Millie situated. My husband had gone home to get some supplies and I was alone in the waiting room. After a while a doctor came out and told me that Millie had heart disease and she was in heart failure. He suspected she had a coarctation and would know for sure after an echo test was completed. I did not know what to think ! I had never heard of anything like this happening - it certainly had never happened in my family.
When my husband arrived I told him that Millie had heart disease. I will never forget the look of shock on his face. We both cried a lot that night.
The echo test confirmed that she had coarctation of the aorta. She also had a VSD and a bicuspid aortic valve. We were told that she needed surgery and the surgery was to be performed within the next two days.
Millie had to be transported to another hospital for the surgery. I was told that Children's hospital operated on the sickest and the youngest patients first and right now Millie was both. In the meantime Millie was put on medicine to reopen her ductus and lasix to flush the extra fluid out of her body. She had a lot of tubes and wires coming out of her but we were told that after hersurgery she would have many more. She stayed in the I.C.U for three days. On the third day, she was transported to Seattle.
I drove up to Seattle in my car . By the time I got to the hospital I had lost sight of the ambulance. The hospital was so big! I got so lost and walked for what seemed like miles before I found the pediatric I.C.U.. I was on the verge of tears by the time I found the right floor and wing, it only upset me more to be told that I could not go in and see her yet.
Millie had her surgery the next day. The surgery went well. But we were told she would need another sugery to repair her VSD sometime within her first year. When her surgery was over, we were allowed to go in and visit her but I was almost too afraid. They only allowed two visitors at once, so I let my sister and my husband go in first. My sister came out and told me that Millie did not look too bad, so I went in and looked at her. She looked so peaceful. She was still asleep, and a ventilator was breathing for her. The worst part was the drainage tube they put in her chest. She looked like a Borg from Star Trek!
Millie recovered quickly. They took her off the ventilator the same night and two days later she was transferred out of the I.C.U. and downstairs to the surgical unit. There were three other babies in her room and all of them had parents with them. I hated that room. It was so noisyand there was no privacy. I could not sleep in there at all and the hospital was 70 miles away from my home. But my cousin manages a near-by hotel and she gave me a free room for the entire week . Millie stayed in that noisy crowded room for four days, and then we got to take her home.
Two weeks later we were back in the hospital. Millie had contracted RSV. She was in thehospital for a week. By the time she was 6 weeks old she had spent 19 days in three different hospitals.
Now we are waiting for her next surgery to repair her VSD. The next surgery will be open heart surgery and I worry a lot about it. I will be glad when it is over. Through all of this I have managed to breast feed her ( I have spent hours in the breast pump rooms!) and I like to think that it has given her an extra boost and helped her to get through all of this as well as she has.
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