The first 6 months with Michael was a time for me to become acqainted with him. When he came home it was like a "courtship," learning everything there is to know about Michael and his prematurity. Then came the "honeymoon" phase of growing closer to him and learning that he loved us too! He smiled and returned "coos" when I spoke to him. He became very attentive to our faces and voices, something he didn't do when he was younger.He was now 6 months old but in terms of where he stood, Michael was really a 3 month old by corrected age learning to lift his head for up to 2-3 minutes.
Holding his head up while on his tummy happen gradually since his therapists and I had been working with him on it since April when he was 4 months old. Back then, he need support/assistance to help him lift his head. Now, Michael has finally reached his first milestone, holding his head up onn his own!
For me, it was both relief and overwhelming happiness that Michael could accomplish that. Timelines had no importance here, what was important was Michael did it, even if it was at his own pace!
Michael was doing great. Duirng the day at playtime and during therapy he did not wear his apnea monitor. He seemed to move more and enjoy the freedom.
He was still taking his meds for his reflux, Raglan and Zantac which made him very sleepy that on some days he didn't play at all. This was disheartening that the medicines he needed Reglan and Zantac made him so tired and when he took caffeine drops to stimulate his heart, it made him jittery.
He was still stiff when it came to his muscles, one of the many characteristics of preemies. Their muscles are very tight after birth and for months after that with clench fists, legs and arms very stiff and tight restricting movement. Michael received daily infant massage by Tim and me as taught to us by his physical therapist. We played soothing music to calm him throughout the day.
At age 7 months, Michael's corrected age (real age) was 4 months 9 days. He was now learning to turn around while on his tummy, but he needed prompting. He started rice cereal by spoon. Michael said his first sound "DA" which Tim hoped was for "DADA!"
He was now feeding every 3 hours and starting rolling side to side. In August at age 8 months, Michael now weighed 14 pounds and 8 ounces.
He was developing his own personality right before our eyes.Now, after a wonderful "honeymoon" with our beautiful son Michael, we had to take 2 steps back!
In July Michael was diagnosed withn neonatal hepatitus. Further tests would be done because his liver profile test came back with levels in excess of 300, normal is in the 50's. A liver profile test is a blood test that measures teh performance of the liver.
On top of the issues with Michael's liver, Michael was having more cat scans of his brain ventricles. Some good news...his brain ventricles are still stable.
On August 10, 2000, we received bad news. Michael's liver levels were still high. They finally ruled out the neonatal hepatitus but now wanted to schedule a liver biopsy for August 18th. Tim was angry and didn't believe there was anything wrong. This placed stress on our relationship. He felt that Michael was fine and that the doctors were wrong. Before committing to anything, I thorughly researched the procedure on the internet. I learned that it wasn't as invasive as I previously thought. It would be a needle biopsy, a sonogram would locate the liver and a needle would be inserted to draw a small amount of the liver for analysis. Michael would have to put under anesthesia. The seriousness was putting Michael to sleep, there are dangers in placing infants/babies under anesthesia. We weighed the pros and cons. Tim was against it, but gave in reluctantly.
On August 18th, Michael was admitted to Christus Santa Rosa Children's Hospital. We kissed our precious baby before they put him to sleep. the last time he was here was when he was in the NICU after birth. I hated been there again, I hated putting my baby through this and Tim hated me. He was angry, rude and upset with me. He didn't hold my hand and wouldn't sit with me and my parents in the waiting room. I felt alone. When we saw Michael in recovery, he looked so peaceful yet helpless... Wires everywhere, just like when he was a tiny preemie. I stayed by his side all day and night. I prayed a lot at that time. Tim was still mad at me and even cussed me out in front of the hospital staff. He hurted me not with his words, but because he didn't offer me support and love through this. My mom said that everyone handles a crisis differently. I guess I thought that Tim would be the way he was when Michael was a preemie in the hospital. I came to realize that the difference was there was nothing he could do to help Michael like he did when he was small preemie. Back then, Tim could keep him warm, hold him, and feed him but now all we could do was wait until he recovered and then find out the results. I think that fustrated Tim and I was the target for his anger.By the end of August, we knew what were the results of the liver biopsy. Michael had moderate scarring and mild inflammation of the liver.
The doctors believed the scarring was due to the prolonged use of his umbilical cord for lab work and blood tranfusions. A preemie's veins are so small that blood is drawn from either the veins in the umbilical cord or head. Michael was fortunate they never touched his head but now he had scarring. Michael lost some skills he had learned due to hospital stay. This is normal with children as well as special needs children. So we had to start from scratch, what was important was Michael's health and well-being.On the morning of October 16, 2000 I went to change Michael in his crib. He had just woke up. He had a seizure. His whole body shook and his eyes were fixed on me. I quickly moved everything away from him so that he wouldn't hurt himself. It lasted for less than 5 minutes. I remembered from CPR training that when an infant has a seizure you do not pick them up unless the place they are lying on is a danger to them, you do not feed them after the seizure goes away. Michael was very tired and sweating after it occurred. I held him while I called his pediatrician and neurologist. They wanted to see him that week and said he would be fine as long as the seizure lasted less than 5 minutes. "Fine?", I said. I wasn't reassured by that and took Michael to the emergency room at the hospital for his dake and mine. He weighed 16 pounds 5 ounces. They never could determine what caused the seizure and to this day Michael has never had another one.
Michael seemed better the following months. he still had trouble with head control. Many days his head tilted to one side, we worked on stretching and massaging Michael's neck and shoulders. Michael now began to rock back and forth on his hand and knees showing he was getting ready to learn to crawl. Michael's therapists loaned us a special chair called a "corner chair" with velcro straps to help Michael sit supported.
Michael was beginning to do more as he neared his first birthday.
He finally said "MAMA" in November at age 11 months. That was a wonderful experience for me! He could sit propped with pillows in a laundry basket, something my mother suggested that she did with us when we were babies. It worked better that than darn "corner chair."On December 1, 2000 Michael reached his first birthday!
It was big milestone for him and us. The last 6 months, we had gone through a "roller coaster" of emotions and stress dealing with Michael's health and it was beginning to affect our relationship as a couple but we vowed to make it together as a family. Tim worked on trying to relieve stress and I devoted my time on learning everything I could about Michael's medical condition(s).
We made it though...a whole year watching Michael grow from a 2 pound 6 ounce premature infant to a 1 year old baby weighing almost 18 pounds. What was in store for us from then on we didn't know but we knew we would face it together. ~~Sandra~~
A preemie's pooh to Michael 12-01-99 and wife to Timothy Lee
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