Abby was born at 27 weeks on February 16, 2001. She weighed 910 g. (2lbs) and
was 25 cm long. She was born at 1:29 a.m. by c-section. Abby was breating on her own, but they intubated her anyway. Fortunately it was not busy in the high risk department at Mt. Sinai Hospital in Toronto, Ontario, Canada so they let me see Abby when she was approximately 2 hours old. She was so tiny, but she was very pink and trying to breathe above the ventilator and there were umbilical lines in her belly. She was beautiful and despite everything, I wasn't afraid for her. There was just something about her. I knew she was strong and would make it.
I went to see her the next morning and she was not doing as well and they had put her on the oscillator.
When Abby was 3 days old, while doing a routine head ultrasound, it was discovered that she had a brain bleed or Intraventricular Hemmorage (IVH) and it was one of the worst ever seen by the doctors in the NICU. I was told that if Abby survived, which was unlikely, that she would be severely impaired mentally, be blind, deaf, need a shunt to drain the fluid which would further impair her mental capabilities, never walk, never talk, never eat on her own, nor breathe on her own (I am probably forgetting some
of the other negative things that I was told). It was strongly encouraged that I place a do not resuscitate order (DNR) on Abby. (It was also suggested that the doctor could withhold feeding Abby and let her starve to death. This was just in human to me.) I did place the DNR order on Abby (and will never forgive myself for doing so).
Three days later, Abby was breathing room air with the aid of nasal prongs, and she was tolerating her feeds extremely well and I took the DNR off of Abby. I could not sleep at night and knew I had made the wrong decision. It was a good thing that I listened to my heart and not the doctors, because Abby needed to be intubated the very next day as she got an infection. It was like she was waiting for me to take it off.
Our stay in the NICU was not at all a smooth one. I had to learn to advocate for Abby. There were times when she was treated as a baby who was simply ill because of her bleed not because she was premature. Whenever she got sick, it was always blamed on the bleed first, and it wasn't until that I demanded that Abby be tested for infection or whatnot that they would run the test and discover she did indeed have an infection. In all of the circumstances, it took my yelling at and having heated discussions with the doctors before they tested Abby. There was even one doctor who would not speak to me again because I took the DNR off of Abby.
Abby was only vented 3 times and each time, it was for no longer than 12 days and in approximately 30% oxygen. Other than that, she was on CPAP for a while (but always in minimal oxygen) and nasal prongs. Her last day with nasal prongs or any breathing apparatus was April 19, 2001. She began nursing on April 3, 2001 and despite what the doctors said, had an excellent suck and would nurse often - in turn decreasing her gavage feed. It was wonderful.
Apnea and bradys were common for Abby. I saw her desat to 8 at one time and was terrified, but she pulled through it without having to be reintubated.
I believe a lot of what helped Abby survive, was her own will power; however I spent 12 hours a day every day with her and held her everyday (vented or not) and did a lot of kangaroo care (skin to skin care).
Abby left the NICU on April 24, 2001 and went to a Special Care Nursery or Level II Nursery closer to home. She came home on Mother's Day, May 13, 2001 - 5 days before her due date.
Today, Abby is a healthy and happy 22 lbs. baby girl. She does have cerebral palsy on her left side, however it is mild and she is days away from walking on her own which is right on target for her corrected age. She has physio and occupational therapies and her vision and eyesight are fine (her left eye does turn in a bit, but will be corrected with a patch). She also has a heart defect (an ADS) which is not symptomatic at this time.
The neurologist at the Hospital for Sick Kids in Toronto has told me that he is stunned with Abby's progress, that she is somewhat of a medical wonder because with a bleed the size of hers, she . . . well anyway . . .
Please listen to your hearts as much, if not more, than the doctors when making decisions about your child. They are all fighters, and will let you know what to do.