Wednesday, March 24, 2010

Through my mothers eyes! (my story)

It was  late July back in 1999, spending a usual afternoon with my sister Lisa.
 I had mentioned  to her that I was craving “Top Ramen” then  Lisa said to me “I bet your pregnant!” “Pregnant! “ I said “no way!” The next thing I knew I was taking a pregnancy test, and to my surprise, I was.
 I went to the doctor within a couple of days to confirm it, and she said I was well into my second month already. I thought to myself “not bad, now I just have seven more months left”. I had been pregnant once before with my first child Christopher, who was now 3 1/2 years old. That pregnancy was perfect, I felt great, matter of fact I had never felt better, I even looked good. I just loved being pregnant, so I was excited to experience that all over again.
 As the months went on I just felt yucky, I had a couple of people tell me I was going to have a girl, because it felt so different from the first time. So that helped a little since I loved the thought of having a girl.  However, as time went on I still felt blah!
Then one early morning my son Christopher came into my room as I was lying in bed, he said he had stubbed his toe and was crying, I turned over to kiss his toe and the room suddenly started to spin out of control, I had never experienced that before in my life.
I got up to walk down the hall to find my husband (Jerry) but I could barely walk, I kept banging into the walls like a drunk! I even tried to sit on the toilet seat; Jerry had to hold me there so I would not fall off. I called the doctor but they were not concerned, they said I probably had an inner ear infection, and suggested I take Dramamine for the symptoms. Soon after that, I thought I had some sort of an infection,  I explained it to the nurse practitioner, but she did not even ask me to come in. Therefore, I assumed everything was fine. The following week was Thanksgiving and we were expecting a lot of family for dinner.
That morning when I woke up, I felt like I had the flu ,my right leg hurt very badly when I stood for more than a minute or two,  right before the first guest came in I was throwing up in the kitchen sink. (don’t tell them that) However, with the help of everyone I made it through. After everyone left I did not have it in me to clean up, and decided to wait until morning.
That morning when I got out of bed, I noticed the sheets were wet!  That was weird, I thought. Therefore, I got up out of bed, it seemed every time I moved I felt I was getting even more wet. I told Jerry, he called the doctor and they asked me to go to the hospital and be checked out.
 By this time, I was 24 weeks along and I figured that they would check me out and I would be backing home where I needed to clean up the aftermath of Thanksgiving.
 As I was lying in the hospital bed a nurse checked me and left, then another nurse came and said, “So I hear you’re going to have a baby today!” I said “WHAT! No I don’t think so I’m only 24 weeks” She said, “Oh I’m sorry I must have misunderstood” “uh, yeah!” I said.  Later she said it looked like I had a bad infection. She said it looked as if I was going into premature labor and they would do all they could to stop it. She also said there was a chance they would lean me back with my feet elevated for the next 16 weeks to help stop it. That totally freaked me out, the thought of staying in one place for any amount of time would drive me crazy and I remember thinking, I haven‘t even gotten a crib, let alone anything else, But then another nurse interrupted her to say she wanted to do a ultrasound on me.
She said we were not to see the screen and we could not say a word. As soon as she was done it all became very confusing to me, from that point on everything was going way too fast! Their were a number of doctors and nurses swarming me with questions and papers for me to sign. The nurse that was closest to me said the “baby’s foot is coming out!” In addition, they needed to do an emergency C-section, I was so confused.  I asked about how much would the baby weigh she said 1-2lbs. I personally had never heard of a baby being born that small. The next thing I knew I was in the emergency room with all these nurses and doctors all around me ,with their hospital masks on all I could see were their eyes, and the look they had in them made me think that I was going to die . Everything was going so fast. Then this Nun came into the room and started to pray over me (this was a Catholic Hospital) then that was it! I really got scared…They had to give me a very quick epidural and they leaned me back, my feet were elevated.  This was the weird part, I could not feel pain but I felt them inside of me. It felt  as if  they were tugging on my lungs for some reason, I remember telling them I was having a hard time breathing, but no one seemed to hear me, It was the strangest feeling ….  The next thing I remember I was in the recovery room. Jerry was with me, the doctor came into the room and told us it was a boy and he weighed only 1lb 6oz. I did not know a baby could live being that small. She wanted to know what we were going to name him. Well that set me back a bit since I had thought for sure I was having a girl, but Jerry and I looked at each other and almost in unison we both said “Joseph” like we had it all planned the whole time. I had asked her when she would bring the baby to me and she looked at me strangely and said “that would be impossible, he is too sick” It didn’t register to me till later that he was hooked up to too many machines. Then for what seemed like an hour, our doctor sat down to tell us all the problems we might be faced with. It all sounded Chinese to me. The things that stood out to me most were “Cerebral Palsy” and “Death!”  I had a strange calmness come over me but I felt as if we were in for a long haul.
 Soon after, I called my Relief Society president to tell her of the event and she said, “Did it live! “ I remember thinking “how rude!” but this was not a normal situation and I had to be prepared of how people would handle this. The next morning this very large Doctor came into my room to tell me he had to do a procedure on Joseph’s heart valve, the procedure was called PDA legation, this is where they have to close this valve on the heart to keep it from opening and keep blood from flowing into the lungs.  He also needed to insert a Broviac into his neck for all his blood transfusions. He said Joseph’s valve is the size of a piece of hair because he was so small. Before the surgery Jerry had suggested that he give Joseph a blessing, then a little while later my sister Lisa and her husband Mike, my best friends husband Jeff, our bishop and Jerry went to see Joseph and gave him a blessing. I asked my sister to go in so she could tell me all that was said.  When they got back to my room, I had asked how he looked and they just said fine and everyone seemed to act weird to me.  Except that, Jerry said that he would be fine and that he had an overwhelming feeling that the Savior himself would be in the room watching over Joseph. About fifteen minutes before the surgery had ended, I asked Jerry to see if he could find out how things were going. Jerry said that as he was walking down the hall he had the spirit testify to him that everything would be just fine. Lisa told me later that after she went home, she laid in bed in a fetal position for a very long time and could not move. “Maybe there is something wrong with me,” I thought because I felt fine. After the surgery, the doctor said that all went well. And that I would be able to see him soon. Jerry had seen him the first day but I could not, because I had just had a c-section. However, they took a picture of him; I thought he looked fine, just a little small.  Except you could not really see his face because it was covered with a large piece of white hospital tape. Later that day our Bishop came into the room and suggested that we give a child’s blessing while in the hospital in case he did not live. However, I said, “NO he will be just fine and I want it to be done at church like all the other babies“.
That night I was finally able to see him for the first time, Jerry went with me, I just recall him being so small and him laying in his open bed , with the bed completely covered in “saran wrap” . The first thing that came to my mind was about 10 yrs prior,  when I found a little red robin that had fallen out of a tree, he was newly born and he had no feathers he was very fragile you could see through his skin to his veins. That was what Joey looked like to me. His eyelids were very under developed they didn’t separate, it was like just a thin skin covering his eyes. There were more tubes than I could count coming out of this little body. The nurses were unbelievably sweet and tender to Jerry and I. It felt as if we were in heaven and they were the “angels“. This NICU was one the most peaceful place I had ever been in on earth, they kept it quite dark and everyone whispered. I felt safe having Joseph here.
I remember Joseph’s first nurse Colleen, she said she had been calling him “little Joe”. He already had a nickname! that somehow was comforting to me. It all was becoming more and more real to me.  On the Third day, I had to go home and was not looking forward to this, especially coming home empty handed.
However, I did have my sweet little Christopher at home needing his mommy.
Once I got back home, the nurses and doctors suggested I come back to the hospital often so I could try to bond with Joseph. In addition, Jerry and I did, at least twice a day and then when Joey started to nurse, it was three times a day for me. Friends and family stepped in and helped care for Chris when we were at the hospital.  Every morning was the same; we would awake from a phone call from the doctors giving us a daily prognosis of Joey. I remember on one occasion his nurse “Joan” (one of our favorites) had called us and said that Joey had some kind of blood infection and he needed to be isolated, she also said he was not doing well and we should get down there ASAP! As Jerry and I hurried out the door, we stopped by our room and knelt in prayer right before we left, and then made our way to the hospital. As soon an s we got to NICU we were met by his nurse and she asked us “did you just have a prayer about 10mins ago?” we said “yes”! She said “Oh! I just knew it! Because about 10 mins ago he made a huge change for the good!” That was one of the many miracles that we experienced.  Another time is when The eye doctor told us his retinas were detaching and he needed surgery the following day. The night before surgery Jerry and my brother Jim went into the NICU and gave him a very special blessing. The following morning at 6:00am we went in to be with Joey before the surgery,  the doctor said he needed to do one more exam before going into surgery , when the doctor completed the exam he turned to us and said “this is a miracle, we do not have to do surgery”. Joey stayed in the hospital a total of 41/2 months before coming home. Really it went by so fast because I was constantly on the go! A few days before they released him from the hospital I had mentioned that I never heard him cry, the nurses said “oh yes he cries” but I  insisted that I personally never heard him. They said the following day the doctor would check him out. The next day the doctor told me that I was right he didn’t make a sound! They then wanted to send him to Sutter Memorial hospital before releasing him. April 2 he was sent  to Sutter Memorial ,  they checked him out they found that during the surgery he had right after birth (PDA ligation)  the doctor must have paralyzed his vocal chords by accidentally touching it, and that they assured me in time it would be just fine. So not only was I taking my little preemie home for the first time but he also could not make a sound, and I wouldn’t know if he was crying unless I was looking at him. Lets just say the first couple of nights we got no sleep at all. But the spirit in our home was one that I’ll never forget! Christopher was only four at the time, and I remember one early morning  about a week after Joey came home I was in the bathroom and Christopher followed me in ,he sat down on the floor he looked barely awake, we just were doing a little small talked when he said “mom? Did you see that?” I said “what?” he said “the angles that went down the hall,  “they are here to check on Joey”.  I asked him what they looked like he said “they had church clothes on ,but they were all white”……..
Joseph had a lot of visitors the first three years of his life, we were granted a nurse they came into my home 20 hours a week, and at that point I was able to leave and do any of my errands, he also had physical therapy , occupational and speech therapy weekly. Life was very busy for us at that time. That all ended when he was three years old and all was great, he had progressed quite well and was doing fabulous. When he was around 4 I put him into preschool and there we thought he had hearing problems, His preschool teachers were amazing, they kindly told to me  learn about “AUTISM” they were both teachers for many years for special needs children and this was there first time teaching mainstream children. I believe they were sent there just for Joey. I will never forget them. Soon after that we moved to Utah and that is were Joseph was diagnosed with high functioning Autism. Although we have our trials with Joey I don’t think it’s nothing we can’t handle.  Joey has been a huge blessing in our lives and can’t imagine life without him, he has taught us all many things and amazes us to this day.  We  just had a  parent teacher conference and was in formed that next year Joey will be 90 percent mainstreamed! Yahoo!

Friday, March 19, 2010

St. Patrick's Day made me happier than ever. I got a ton of candy, everything was green!

Sunday, March 7, 2010