After a very difficult pregnancy, our daughter Alexandra was born at 23 weeks gestation in the beginning of January of 2002. I remember praying every day to make it farther into the pregnancy. It was very difficult to accept, I seemed to be in a state of shock, and managing with my emotions was something I tried to hide. I had to be strong for her, and I managed to be strong for her.
I remember the first time I saw her. She was so small, frail, her arms no wider than my fingers, her legs the same. Her hands were no bigger than my thumbnail. She had a fine coat of hair on her face, shoulders and arms. One of her eyes was still fused shut. She was still beautiful. I suppose only a mother can see that.
She weighed 1 lb., 3 oz. at birth. Alex was jaundiced, as most preemies are, and was on a ventilator, which can be expected at her gestational age. She received all nutrients through IV for a fairly long period of time. We were told her chances of survival were around 20%, and the chances of her leading a normal life were very slim. Even though the fear was preparing me for the worst, an inkling of faith kept me believing she would be okay.
We nearly lost Alexandra on many occasions. She would get pneumonia, she would aspirate her milk into her lungs, and it would take a long time for her to recover from each episode. She was on so many medicines that when I look back I can hardly count. She needed medicine for reflux, getting the fluid off her lungs, and infections, plus iron and insulin. She had many blood transfusions since blood drawing would take so much out of her. It was a vicious cycle and it seemed as though we would get her better and the next day she would be two times worse than the day before. It took so long to get out of the “one step forward, two steps back” phase.
At around three-to-four weeks of age we got news we weren’t expecting to hear. Alexandra had a head ultrasound that showed a grade 3 and 4 IVH -- an intraventricular hemorrhage, or a brain bleed. Most of these severe cases of bleeding can leave a child wheelchair bound from severe cerebral palsy, not to mention the wide range of other possibilities that come with IVH. There were too many to list, too many to guess until she was old enough to evaluate for problems. At around two months she developed an infection from an IV that had been left in her arm beyond its time of expiration and she developed osteomyelitis, or inflammation due to an infection in the bone. We had surgeons from the Children’s Hospital come in and draw fluid from her shoulder, and the possibility if this problem getting out of hand was great, to the point of a possible amputation.
At four months we had another aspiration problem. Alex had milk in her lungs, and it caused pneumonia. This time, no matter what was done, she wasn’t doing very well. She was back on the highest ventilator settings, highest oxygen settings with saturation only in the low 50’s for over two weeks. I remember the hospital calling me in the late evening and telling me they needed me there and they didn’t expect her to make it through the night.
I just cried and screamed, “My baby! No, not my baby!” I couldn’t believe it. She had fought for four months. This wasn’t my baby. It couldn’t be her. Upon my arrival Alex looked horrible, you could see the machines pushing air into her lungs she was medicated for pain and was hardly awake.
There were at least five people around her bed, and seemingly no one expected her to make it through the night. I held her hand and rocked by her bedside and wept with my husband beside me just looking. I remember staring at the monitors and praying, “God please help her,” and not once did the monitors show a raise in her oxygen saturation. I prayed, “God, please, if she is to be with us, let her get better, but if she is to be with you, please do not let her suffer.” The next day brought fear. Not much had changed that morning. I managed to sleep from exhaustion and upon waking I called to check on her. This time was much different. Alex seemingly had made a turn for the better. She was being reduced on her ventilator settings and her oxygen was getting turned down. It was a miracle!
It wasn’t much more than a week after her recovery when a doctor approached us, telling us she would more than likely not be coming off the ventilator without surgery. She had conditions called BPD (bronchopulmonary dysplasia), chronic lung disease, tracheal malacia, and other conditions wrong with her airway that wouldn’t be able to stay open without the tracheostomy or the tube which intubated her. We were told that if she had another aspiration episode like she had the last time, she would probably not recover.
Her lungs were in horrible shape, and she needed to avoid another aspiration. They wanted to send her to Children’s Hospital for a tracheostomy. We were scared. We didn’t want her to have surgery, but what parent does? It was our only hope to get her better. We arranged everything, and said goodbye to the nurses who loved and cared for her in the NICU. We went to another hospital and had to get used to a group of nurses we had never seen taking care of our daughter. We were also faced with another problem -- retinopathy of prematurity, or ROP, a condition where the retina starts to detach from the eye. We were worried our daughter would need surgery or possibly go blind. The thing that was helping her so much, the oxygen and ventilator, were the things that were destroying her eyes.
The tracheostomy was a fairly simple operation. It was horrifying as parents to see your child go through a surgery leaving a hole in your baby’s neck. I remember seeing it thinking it was a huge hole. I was horrified and confused watching the nurses care for it. I thought I would never have the nerve to do it myself. Over time, and with recuperation in the hospital, it became second nature. Shortly after having the surgery, Alex finally came off of the ventilator and onto another machine, which is less intense called C-Pap. It was enough to administer pressure to her airways to keep them open. We were getting somewhere. Finally!
We came across another problem. Alex was still eating through a tube through her nose that went into her stomach into the jejunum (a section of the small intestine), called a NJ tube. She wasn’t eating orally. It was all tube feedings -- she hadn’t eaten anything orally period. We had another surgery we were faced with that didn’t seem right. Alexandra had suffered from reflux since birth, severe enough that they were worried about oral feedings and possibly aspirating again.
They wanted to do a surgery called a g-tube with fundo, a tube in her small intestine to feed her with and a tie around her stomach to prevent reflux. I was horrified looking at how big an incision it was in those children who already had them. I refused! I wanted Alex to have a chance at eating like a normal child! She was very cautiously watched, of course, Alexandra was on some medications for her reflux. It wasn’t that severe, but the most concern they had was that her reflux could damage her airways which is a huge concern for a baby as ill as she was. We contacted the lactation department and had some feeding specialists come up and help us attempt bottle feeding Alexandra. Not surprisingly, it was a ‘no go’ first couple of bottles. I did not give up hope! I kept trying. Alex started taking her bottles with some cheek and chin support and lots of hours in the hospital. She finally was bottle fed, and we got to pull the NJ tube out! She finally had her face free of tape; it was the first time for us.
Alex’s ROP was improving without surgery as we had expected would happen. The better her oxygen settings, the better her eyes became. She managed to avoid the surgery altogether.
At age six months we started talking about going home! It was the first time we were able to talk of it. Alexandra had become stable with her settings on CPAP and oxygen; she was staying well and doing wonderfully at eating orally. We had to take classes on how to care for her tracheostomy, to do changes, trach ties, suctioning, equipment settings and how to manage the equipment and care for it. We learned to do infant CPR and learned to use a bag just in case. We were mostly waiting this time period to gain nursing coverage to monitor Alexandra while my husband and I worked and slept.
We completed our training for caring for Alex. We never imagined we would take her home, and when we did we had no idea we would be taking so much stuff home with her! She came home on CPAP and oxygen, so she needed a suction machine, a portable suction machine, a battery to run the CPAP if we were to leave the house, oxygen the size of the a-bomb, portable oxygen tanks, suction catheters in multiples, trachs in multiples, tubing, pieces for attachment to her CPAP -- all of these little things and big things we had to make sure we had at all times. We were so nervous to take her home! She came home on a high-calorie formula, a recipe of mixed powders to make a very thick and concentrated formula. I lost my milk supply around four months, but at least the first few months she did get my milk, but even then it was more formula than my milk because of her need for calories.
Before we went home, Alex failed two hearing tests. I am not sure why she failed, but I do know that while she was sedated during the tests, she would turn and look at you when you spoke to her. The tests were later found to be false. She had another head ultrasound before leaving the hospital, and the doctors were so hesitant on revealing the results to us. Alexandra on this scan had absolutely no signs of blood in her brain, no damage, or anything abnormal -- period. The physicians were hesitant on telling us how or why. All we got was, “The first 10 must have been wrong.” I couldn’t have laughed harder. Maybe they never learned of miracles in medical school.
