Welcome to the sister site of Premature Baby and Child.From the creator of http://www.prematurebaby.org
Our Miracle
After a very difficult pregnancy our daughter, Alexandra was born at 23 weeks gestation in the beginning of January. I remember praying everyday to make it farther in 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, 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 no bigger than my thumb nail. She was with 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 1lb 3oz at birth. Alex, upon birth was jaundiced as most preemies are, on a ventilator, which can be expected at her gestational age and received all nutrients through IV for a fairly long period of time. We were told of 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 ok.
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 when I look back I can hardly count, for reflux, for getting the fluid off her lungs, for infections, 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 3-4 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, or a head bleed, most of these severe cases of bleeding can leave a child wheelchair bound from severe CP, not to mention the other wide range of possibilities that come with IVH, too many to list, too many to guess until she was old enough to evaluate for problems. At around 2 months she developed an IV 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 4 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 and had sat’s in the low 50’s for over 2 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 4 months this wasn’t my baby it couldn’t be her. Upon arrival Alex looked horrible, you could see the machines pushing air into her lungs she was medicated for pain and was hardly awake. There was at least 5 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 praying “God please help her” and not once did the monitors raise in her sat’s. I prayed with her “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 a doctor approached us telling us she would more than likely not be coming off the ventilator without surgery, she had conditions called BPD, 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 another episode like she had the last time, her aspirating, 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, what parent does? It was our only hope to get her better. We arranged everything, we said good bye 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, 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 mortifying 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 mortified and confused watching the nurses care for it I thought I would never have the nerve to do it myself. Over time, and re-cooperation 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 or 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 feeding’s 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 mortified looking at how big of an incision these children who already had them had. I refused! I wanted Alex to have a chance at eating like a normal child! It was very cautiously watched of course, Alexandra was on some medications for her reflux it wasn’t that severe, 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.. 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 for us.
Alex w/o her feeding tube
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 all together.
At age 6 months we start talking about going home! It was the first time we were able to talk of it. Alexandra had become stable with her settings on c-pap and oxygen, she was remaining 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, equiptment settings and how to manage the equiptment 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 I, and my husband 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 C-Pap and oxygen, with her trach she needed a suction machine, a portable suction machine, a battery to run the c-pap 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 c-pap, 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 we had to mix of neosure and similac powder mixed to make a very thick concentrated formula. My attempts to pump for so long I lost my milk supply around 4 months 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 of calories.
Before we went home we failed two hearing tests, I am not sure why she failed, I do know she was sedated during the tests but also that she would turn and look at you when you spoke to her, this later was found to be false. She had another head ultrasound before leaving the hospital, doctors were so hesitant on revealing the results to us. Alexandra on this scan had absolutely no signs of blood in her brain, any 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. I praised God, he never let me down, but God will question you.
It wasn’t the end of our battle. Shortly after coming home we received a call from an federally funded organization called First Steps to have Alexandra evaluated for physical therapy, occupational therapy, speech therapy, and intervention. Due to Alex’s premature birth she, at 7 months was technically only 3 ½ months old developmentally. Even being 3 ½ months old developmentally she was even more delayed due to her being in the hospital so long, and laying on one side and the lack of interaction she would have had if she were at home. Alex qualified for all of the therapies I had mentioned. She had 2 years of therapy her physical therapist thought from the beginning Alex would have Cerebral Palsy but we managed to overcome her delays. She was delayed in crawling, walking, sitting, talking, and her motor skills. She started sitting around 13-14 months of age. She started crawling at 15-16 months of age. She didn’t start walking until her 2nd birthday. She has over come all obstacles and now graduated from PT and OT.
I weaned Alexandra off her oxygen and her C-pap and at age 2 ½ we were able to have reconstruction of her airways and become trach free! We spent 5 weeks in the hospital during this procedure and 3 weeks on the ventilator again, it, in the long run was worth it.
They took a piece of rib to make a graft to keep her airways open, this is one of her first pictures without a trach.
We still have a couple of preemie issues, weight has always been a concern. We see an endocrinologist about growth, she is now age 3 and still weighs in around 19 ½ lbs and only stands 34 inches tall, she has not been on the charts ever in her life. Another concern is the growth on her lip, its called a hemangioma and it is very common in preemie girls, it is usually supposed to start going down in size and disappear without a trace but for whatever reason it has not, we see a hemangioma and vascular malformality clinic for this and look for removal in the future. We also have been dealing with her teeth, due to her prematurity she has lack of enamel on her teeth, we had several fillings and one crown placed recently and we hope that her adult teeth will be ok when they come in. She also requires speech therapy, though she has graduated from her New Perceptions classes she will continue with speech therapy in preschool. She has something called glottal fry, or where her voice sounds like a duck, this is due to her having a tracheostomy she had created a way of talking with these false vocal cords and we are dealing with teaching her to talk in a normal voice still.
Alex is now a happy 4 year old! She is our miracle! Though we still have some issues to deal with we count our blessings, it could have been worse. Her eyes are completely fine, her osteomyelitis is completely gone, her IVH was completely resolved with no damage, her lungs are still preemie lungs as doctors say but she requires no medications for them, she isn’t on any medications for reflux. We thank God for Alexandra. Everything in life seems so insignificant when you see what she has gone through and overcome.
I now run an online support group for the past year and 1/2 we have been developing, myself and other preemie mom friends, we bought a domain http://www.preemieparents.org and have a forum located from that location with nearly 400 members of preemie parents. Its nice to come together as a group to support each other during difficult times. Andrea Workman
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