Russell, Abby Elizabeth

[left:e6aa00c5af]http://www.cherubs-cdh.org/Album/new/russell-abby.jpg[/left:e6aa00c5af]In May 1997, I found out I was pregnant. My husband and I were, of course, thrilled. The pregnancy was somewhat unremarkable, expect for some light spotting at week 8 and polyhydramnios at the end. Looking back, it's frustrating to recall that my daughter's right sided CDH was not diagnosed until birth. I had 5 ultrasounds, the last ultrasound being a level 2 ultrasound to determine why I had so much extra fluid. All ultrasounds came back saying that our baby looked normal and healthy. It was because of this information that I decided to deliver our baby in Port Hope, an under facilitated hospital, 70 miles from the nearest pediatric hospital. We have a son as well who was two years old at the time and it was 4 days before Christmas when Abby was born.

Anyway, early in the morning on Sunday Dec. 21, 1997, my water broke. We went to the hospital and I was examined and monitored. Shortly into the labour, the fetal monitor began to show a drop in the baby's heart rate. The only OBGYN in the county was called in and after doing another ultrasound, he assured me the baby was fine. Afterward, there was more concern about her heart rate so, he decided to do a C-section. The spinal didn't go well and after half an hour, the doctor decided to opt for a general anesthetic. I woke two hours later to learn that our new baby girl, Abby, had a right sided CDH, that she was unable to breath on her own and that the transport team from Toronto's Hospital For Sick Children was on its way. It turned out that there was another emergency in a neighbouring town and the OBGYN had to leave early. The doctor who did my anesthetic was in charge. He had never seen a CDH baby before. He told us that Abby's chances were slim and if she did live, he felt certain that she would be brain damaged due to lack of oxygen at birth. Seconds after birth, Abby had turned blue and they bagged her manually while blowing oxygen in her face.

Three hours after she was born, the transport team arrived and she was finally intubated. It was another 2 hours before they got air clearance to leave. To this day I still become teary at the sound of helicopters. I guess I always will. Once at "Sick Kid's", she was switched to an oscillator. Before they took her, the transport team wheeled Abby into the recovery room so that I could see my baby. She had only a diaper on, her eyes were taped shut and there were tubes and wires everywhere but I thought she was the cutest baby I had ever seen, sorry Adam. They took a picture and left it with me. Because I'd had a C-section, I wasn't able to go with her and John was torn between staying with me, going with her and going home to be with our son, Adam, who was with a friend. Somehow, he managed to do all three. My sister Kris spent her evenings at Abby's bedside those first few days in ICU, doing my job for me while I healed. At 7:00pm the day after Abby was born, Sick Kid's hospital phoned to say that she was not doing well and asked if would we like to come. I was 24 hours post operative but I wanted to go and my doctor, who was feeling very eager to help, signed a temporary leave for me. The nurse gave me a shot of morphine and the doctor packed me a bag of meds to take in case of trouble. He told me that this was really a "no no" but he could see that we were going anyway and he was trying to help.

We headed off in the dark to drive to Toronto. Ten minutes into the drive it began to snow heavily and 30 minutes later it was freezing rain. It took three hours to drive 70 miles. We couldn't see the lines on the road and our car kept sliding and fishtailing. It was almost midnight by the time we got to see Abby. We must have been a pathetic sight. We were both freaked out and crying. We were sure that she was dying and I just wanted to hold her so she could die in my arms. I couldn't stand upright and I was heaped over top of Abby whispering in her ear that I loved her and that it was okay for her to go. I would never forget her. It was so late that there were no staff doctors there so a nervous fellow tried to answer our questions. She kept referring to Abby as a boy and after a while, that's all I heard. "Blah blah blah he". I couldn't think clearly and I became more and more upset and exhausted. The storm outside had gotten so bad that we couldn't drive back to Port Hope hospital. At 2:00am, we were shown to a parent room to spend the night.

At 9:00am, after a very deep sleep, thanks to the meds my doctor packed me, we met with the staff doctor. Abby had done a 180 and had stabilized. He said that they had done an ultrasound of her brain and that they couldn't see any damage. Her behaviour appeared to be normal and we would just have to wait and see. We returned to Port Hope hospital where I stayed until I went home on Christmas day. That was a really rough day.

Abby's nurse called me at home to ask me to begin pumping my breast milk. At first I was unsure of whether or not I wanted to begin pumping but I decided that Abby was fighting so hard just to breath, I needed to try my best too. It was something I could do that no one else could do. I pumped for four months. Abby never did breast feed but she did get the milk that I produced, however small the amount.

On Dec 26th the hospital called to say that Abby was ready for surgery. We packed up my son and mother and at 5:00 am drove into the city to see Abby before the surgery. We met with the surgeon and off she went. We were shown where to wait and told it would take about three hours. 30 minutes later, the surgeon came into the waiting room to tell us that he would not be doing the surgery because Abby had not tolerated the transport to OR well and was not stable enough to operate on. We were stunned, feeling both relief and fear at the same time.

Two days later, we were surprised to learn that Abby was scheduled for surgery again. The surgery went well and the surgeon said that her small right lung was actually a fair size. He noted that the hole was very large and he needed to use muscle tissue from her chest to make a natural patch. She was extubated a week later, after two attempts, and was off oxygen at 7 weeks of age. In the two weeks that followed, Abby moved out of ICU, contracted and survived influenza A, was fluid overloaded due to a pulmonary stenosis and began a long and continuous battle with feeding intolerance.

When Abby was 8 weeks old, she became very sick once again. She had contracted a blood infection, had dehydrated because of the over use of Lasix and was vomiting green bile due to a partial bowel obstruction. All feeds were stopped to give her bowel a chance to rest and because peripheral IVs can't run TPN when a baby has a blood infection, the TPN had to be stopped too. It would be 10 days before the overworked radiology department could do a pic or central line which is an IV that goes deeper into the patient's arteries. Abby was in starvation mode.

To make matters worse, my son had tonsillitis with a fever of 104 and I needed to be home with him. My sister Kris was my saviour once again, staying with Abby every free moment she had and lots that she didn't have. She stayed up all night with her the night before she finally got her central line as Abby was too hungry to sleep.

Finally, the next day, I was able to see Abby. When I arrived at the hospital, the fellow told me that I could try to breast feed her. I was excited but a little nervous incase she refluxed and aspirated. The nurse left us alone and I tried to get Abby to latch on. I tried on one side and then the other. At one point she began to cry and then finally settled down and began to drink. It was the most wonderful feeling but I stopped her after 2 minutes because I was worried that she would vomit. I put her back in bed and she went right to sleep. An hour later, the nurse came in to do her vital signs and discovered that Abby's central line had been pulled out. It had to have happened when I was breast-feeding her. Her doctor was, to say the least, disappointed and all I could do was cry. I didn't get another chance to breast-feed Abby until she was 3 months old and by that time she refused to latch on. The staff doctor was mad at the fellow for telling me to breast-feed at all, the fellow was mad at the nurse for leaving and the nurse was mad at the surgeon for not suturing the line well enough. All I knew was that Abby had only been nourished for 10 hours in the past 10 days and that she was starving again because of something I had done.

After several hours and phone calls from Abby's doctor, radiology agreed to schedule her for another line the next morning. Another child waiting for a line would be told to wait longer.

The next month was spent trying to get Abby to tolerate feeds. With an NG-tube she tolerated 6 ml(.4tsp)/hour, a GJ-tube took her to 12ml (.8tsp)/hour and finally when she was 2 months old, the surgeon decided to do a Nissen Fundoplication to prevent reflux. The surgery went fairly well but she was fluid overloaded afterward. The usual rise in vital signs, was masked because of morphine and what we saw was stressed behaviour that looked like she was in pain. The surgeon assured me that since it was a week since surgery, she was not in pain. In addition, her fontanelle was raised and her tongue was fluttering rapidly, a possible seizure related activity. At this point the issue of brain damage once again came up and another ultrasound of her brain was done. It showed nothing. One of the docs then suggested that they do a spinal tap to see if she had an infection in the fluid around her brain. He talked me into leaving the room while the spinal tap took place. He sat on a bench down the hall with me, trying to make conversation while the procedure was done. While we talked, over the loud speaker, we suddenly heard "Code Blue, 7C Charlie". It really didn't occur to me that it was Abby. Knowing that he was the 7C chest staff doctor, I asked him if he needed to go. He said maybe he better. Suddenly it hit me that it could be Abby. I started walking toward her room and as I approached the nurse's station, usually a hive of activity, I saw that everyone was standing still and starring at me. "Is it Abby?" I asked the secretary at the desk. She nodded yes. Right then the staff doctor came out of her room and told me she was okay. She had begun to cry really hard following the spinal tap, had choked on a mucus plug and had turned blue. They were able to suction her and get her breathing again. The spinal tap, of course, showed nothing. They decided that she was overloaded and that her tongue was fluttering because she was hungry.

I had made friends with a woman whose baby had been hospitalized for 10 months and she warned me not to get my hopes up when the doctors first started talking about Abby going home. So much can change at the last minute and all it takes is one doctor to put a stop to discharge plans. She said that she had begged and pleaded and cried and they would not let her daughter leave. I couldn't imagine how she could be so sure that she could take care of her baby's extremely complex medical needs when the doctors all thought that she couldn't. Never-the- less, 1 week after the Code Blue incident, I found myself doing the exact same thing. I was absolutely sure that I could handle Abby at home. I was, by that point, doing all of her nursing myself and I was totally fed up with doctors, their conflicting information and unnecessary procedures. They were doing nothing for her that I couldn't do at home even better. In addition, I could give her uninterrupted sleep, fresh air, and the psychosocial benefits of a loving family. Like an ungrateful child, I had forgotten the pathetic crying mess I had been when I first stepped foot into Toronto's Hospital For Sick Children. For the past four months I had been educated about this disease and given the skills and confidence to take over the responsibility for Abby's care. I am now, and always will be, grateful for Sick Kid's hospital.

Abby is 15 months old now. She remains 100% g-tube dependent. She retches about 25 times a day but because of the Nissen surgery she keeps her feeds down and is thriving. She gets Cisapride and Losec to aid digestion. Her language skills are extremely delayed and she has a lot of trouble managing her drool. We will be seeing an neurologist this summer in hopes of determining if there has been damage to the speech and eating center of her brain. She is far sighted and needs eye surgery to correct strabismus (both eyes turn in). She is making progress with her gross motor development and most importantly, she is doing very well from a chest perspective. To get her through the winter, we're giving her a maintenance dose of Asmavent and Pulmocort through a mask twice daily and when she gets a cold we increase it to every four hours around the clock. She had one cold that was bad enough that she needed oxygen and hospitalization for ten days.

Abby is a joy to love and care for. She has taught us about patience and the strength of the human spirit. Not an hour of the day passes by that I don't thank God for her. She is my strength and inspiration and I feel proud to be her mommy.


Written by Abby's mom, Karen Russell (Canada)
1999