Thnaks everyone for such great advice. I have been pondering and praying for an answer. I knew deep down that this was my problem that stemmed from me not anyone else. I have been feeling better about the situation but again..... I need to keep faith and hope alive.
Hikchick,
I am always amazed when I hear miracle stories of babies. I have such a hard time talking to people about my daughter because it really hit me hard. I have a 10 yr. old son and he was absolutely normal for the word go. Then, I have this little girl who beat the odds by living. I agree that I need to be more humble and not demand understanding, especially if they have never gone through this before. Do you still cry about what happened to your son? My daughter will be 3 yrs. old soon and I still cry about the whole situation. I remember it as if it was yesterday.
For those who are interested...let me share..
Katelyn was born 14 weeks early. I went into pre-term labor at 5.5 months due to extensive number of fibroids on my uterus. She was born weighing one pound, fifteen ounces and fourteen inches long. She was placed in the Neonatal Intensive Care Unit (NICU) on a mechanical respirator (ventilator), heart monitor and nasogastric tube. We were told that the survival rate was good but she would have a 90% chance of having Cerebral Palsy later in life.
The night of her birth, we were told that she wasn't going to make it because she had suffered a severe Cardiopulmonary Hemorrhage and a Bilateral Intraventricular Hemorrhage (stage 2), thus becoming Hypoxic (loss of oxygen to the brain and tissues). A Cardiopulmonary Hemorrhage is where your lungs fill with blood (thus interfering with gas exchange) and a Bilateral Intraventricular Hemorrhage is bleeding in the brain (in her case it was in both hemispheres). Michael and I immediately called our home teachers to give Katelyn a blessing. Both Brother Dowdy and Brother Stimpson came and stayed with Katelyn almost the entire night. By the next morning, she had miraculously recovered. She had four Neonatologists who were baffled by her recovery. Brother Dowdy became a regular at the NICU. They would let him back there to see her even when we weren't there, normally a no no but somehow the doctors knew he was a blessing to her.
As the weeks passed on Katelyn developed several conditions, Bronchopulmonary Dysplasia (BPD), Respiratory Distress Syndrome (RDS), and Retinopathy of Preaturity (ROP - stage 2). Bronchopulmonary Dysplasia (BPD) is barotrauma (chronic lung disease) from pressure ventilation. It involves abnormal development of lung tissue causing inflammation and scarring of the lungs. She will always have lung issues and BPD will eventually lead to Asthma and possibly Emphysema. Respiratory Distress Syndrome (RDS) is tissue damage to the lungs. Retinopathy of Maturity (ROP) is an abnormal growth of blood vessels within the retina (eyes). It results from high oxygen tension thus causing blood vessels to rupture. If not treated, usually by surgery, blindness occurs. RDS, ROP and BPD are from being on a mechanical ventilator/respirator for four months. Adding more frustration, On Aug 4, 2004 (3 weeks after her birth), Katelyn received someone else's breast milk while in the NICU. Since then she has had HIV and Hep testing every six months up until she was 2 years old. Now, the ROP resolved on it's own over the span of 6 months. She remains to have BPD, RDS and possible gray matter damage in the brain from the Bilateral Intraventricular Hemorrhage.
During her first two years of life, she was home bound. She couldn't have any contact with other children. Our son, Taylor, had to change his clothes and take a shower before he could hold or play with her. This is when I had to quit my job to be with her continuously. Michael had to take up 3 jobs. She was assigned an Early Intervention Therapist, Physical Therapist, Occupational Therapist and a Speech Therapist. She came home on oxygen and a heart monitor. She received Synagis injections each month to prevent Respiratory Syncytical Virus (RSV). Respiratory Syncytical Virus (RSV) is an infection that causes infection of the lungs and breathing passages. Premature babies are at risk in contracting this virus and unfortunately fatality soon follows. Her doctor and hospital appointments were made around office hours to avoid contact with others.
Each therapist focused on a certain part of Katelyn. When she came home, she had very high tone muscles (tight, frigid) in her cheeks, arms, hands and legs. At that moment, CP was quite evident but she was too young to be diagnosed. Each therapist worked with her every week. Today, 2.5 years later, she continues to see each one every week and has added a Swim Coach in conjunction with her Physical Therapy.. CP is not a progressive disease. It will never get worse but can get better. There is no cure for it. Today, Katelyn has surpassed everyone's expectations, even though she remains delayed. We were told that when she hit 3 years old, she would be on the same scale as every three year old child out there. In growth, she has done pretty good. She is at 60% in height but is 15% in weight for her age. She is considered underweight for her age but we know she eats as much as she can.
Here is where she has problems, gait (walking) and speech (language). Her gait is ok when she is walking slow. Her knees and ankles are bending and she can balance herself pretty good. When you walk or run, your hips are rotating in the opposite direction of the trunk of your body, meaning your left leg and right arm goes forward in sync and so forth. Your head remains still and you are balanced. When Katelyn walks fast or runs, her hips and trunk are stiff. She wobbles a little from side to side making her loose her balance. She falls down quite a bit. Also, she is walking on her tiptoes a lot. Most kids do this around 18 months of age....pretty much a phase. Katelyn, however, already went through this phase and now has reverted back. This all makes sense since she had severe high tone muscles when she was younger.
Speech has always been an issue because of the high tone muscles in her cheeks and arms. We had to massage her cheeks, shape her tongue and provide oral stimulation with a toy daily for several months. This has affected her ability to use utensils, which she continues to struggle with. She loves to eat but get frustrated that she can't feed herself with a fork or spoon. She uses her fingers quite a bit. This also has affected her speech. She can speak with perfect articulation, however she lacks the language and understanding directions. At 3 years old, she should have a vocabulary of 250 - 500 words, speaking 4-5 word sentences and understanding two to three step directions. Katelyn has a vocabulary of aprox. 50 words and speaks 2 word sentences (not consistently) and understands a few one step directions. She speaks a lot of jargon. She likes to talk but doesn't utilize words often. Her speech is that of an 18 - 24 month old. She has had several speech pathologist consults and they all say this is a clear sign of CP.
