Sunday, 31 October 2010

• Thom

  All in all this young man continues to astound me. You see, he has more issues than just his Asperger's Syndrome. I don't talk much about those issues because it is still quite painful and my eyes are already tearing up and I haven't even mentioned the events yet!
  
  The night before I gave birth to Thom, he had had a stroke. We didn't know until the labor had started that anything was wrong. They weren't able to get his fetal heart tracings, not even with an internal monitor. They broke my water to go in and see if they could get a heartbeat to register and there was none. They then rushed me into a C-section.
  
  I was awake for it and it felt rather strange--I had detached myself because it was just too painful to consider that I might have lost my son. You see, I knew he had stopped moving the night before. I had thought the old wive's tale of a baby moving less was a sign of impending labor and so went to sleep while I still could when I had noted that he hadn't moved for about an hour. I blame myself to this day although the doctors tell me that it didn't matter. That the damage had already been done.
  
  We (Thom and I) went back to my patient room after he was delivered and did some of his newborn testing. Later that afternoon, I noticed his arms were shaking as if he was shivering. So were his legs. He was wrapped as tight as he would let me and he was dressed warmly. It was August! I had a troubling sensation come over me and I pressed the button for the nurse. She came in and saw what I saw. The shaking didn't stop when you held his arm (like it would if he was shivering from cold). She said something to me which I do not recall now. She told me she was going to take him to the NICU quickly and get some testing done but that she'd be back. 
  
  Hours later and I still didn't have my son back. I called my husband who was at our home celebrating with his friends. I demanded (yes, I had to actually demand this) that he come up to the hospital to be with me and find out what they did with our son. I was sure they had stolen him from me because I wouldn't make a good mom. Silly, irrational? Yep, but scared nonetheless. I mean, it seemed like it had been DAYS since I had my baby.
  
  I don't know why I didn't just call the nurse in again and demand my baby myself. I don't know what stops me from speaking up at times. But I wanted my baby back.
  
  Hubby finally came up with a few of his friends and he went in search of the nurse to get some answers, as well as why no one had bothered to come and tell me what was going on. They assumed I was sleeping (I did have major surgery after all) and they didn't want to disturb me!! ARGH.
  
  The nurse came back with hubby and told me not to be afraid to push the button to call her next time I get worried. She gave me a tranquilizer and a pain med or two. She then told me that my son's blood sugar levels were too low (around 10 and 15) and that it was causing seizures. They weren't sure why but they were trying to get him to feed to raise his blood sugar with special formula and IV fluids. He had also developed jaundice.
  
  I'm not sure how much longer it was when I finally was unhooked from my catheter (I had tried to pull it out myself). I had been asking for that since I got to my room. I couldn't go below floor until that was removed and I proved the nurses/doctors I could walk unassisted. Later, much later, I had gotten a copy of my medical records from that time and saw the nurse wrote in the chart that I was up and walking around (with catheter and IV in my arm) a 1/2 hour after surgery was done. They all referred to me as SuperMom. I didn't feel much like a SuperMom at all!
  
  I finally was allowed to go downstairs to the NICU and saw my son in a bassinet. He was too big for their incubators and not to be mean, but he looked like a giant compared to his neighbors. He weighed 8 lbs 10 oz. and was 23 inches long. His nearest neighbor, the poor thing, was 1.5 lbs. and 14 inches long. I couldn't shake the feeling that this was all just a nightmare.
  
  Either later that night or early the next morning, the doctor showed us the brain images. He showed us the dead areas of Thom's brain. It was HUGE. He said it was a blood clot that had formed in his heart and traveled to his brain--where it cut off oxygen. The "epicenter" of the stroke was in the area that controlled language. Almost the entire left side of his brain was "dead."
  [back from break]
  
  The doctors didn't have any answers for us. Later on we did blood work and our blood held no showing for "extra clotting ability" for me, my then-husband, or our son; nor did we have it when our genes were combined. At the time of this meeting with the doctor, he did tell me that they did not know how this would effect him. He gave us hope and said he could heal the brain damage and Thom being an infant, there was lots of hope. But he added that he may not walk; he may not talk; he may not do a lot of things. I didn't care because I was a Mom. That was something I had been waiting for since I was 7 years old!
  
  Sometimes later a friend of my husband, we'll refer to her as D, called my room. She said that hubby's friends were concerned because I was not concerned. (Never mind I was doped up on tranqs and pain meds). They felt I was too blase about it all. I told her "Well, ya know what? If ALL that results from this is epilepsy? I can deal with that compared to what MIGHT also be wrong with him in the future. I'll worry about that in the future when it happens. I'm not going to mourn the loss of a child I didn't lose!" and she replied "Well, you will be if he has a seizure when you're sleeping and he dies." I hung up. I didn't get much sleep for the first five years of Thom's life because I was so scared he'd have a seizure and die on me when I was sleeping. Do you see why I hate phone calls? LOL
  
  My father and mother (although divorced) were both around. My sister was around. My husband was around. His grandparents and aunt were around. I had lots of emotional support during that time. And I am thankful for that.
  
  A social worker at the hospital contacted the health insurance who was paying for all of this: Blue Cross Blue Shield Federal plan. My father worked for the post office and I was still on his plan (I was 21). The social worker asked for and received an extra night in the hospital for me so that I didn't have to go home without my baby. I was originally given five days post surgery and although I didn't use my room much (always "off floor" on the medical chart when they tried to give me pain meds/take vitals) they knew I didn't want to go home without my baby. Thom's seizures stopped within 3 days and it was likely he would go home on the sixth day. The claim person at Blue Cross told the social worker she'd had a premie and knew what that was like to go home without her baby and she had the power to prevent me from knowing what it was like and she'd give that to me. God bless those women, whomever they may be.
  
  Sadly, he didn't go home until the seventh day and I did have to go home for one day without my baby. I thank God it wasn't longer than that though! I got to know the mom whose baby was next to Thom's and she had been coming to the hospital for four months while he son healed and grew strong enough to go home. Our babies went home the same day *grins* but I'm glad I didn't have to go through that. Call me selfish, I can take it!
  
  I dropped off my things and returned to the hospital. I stayed there. They did some more testing (MRIs and such) that afternoon/evening and the doctor said if the test results come back the right way, we'd be able to take him home the next day (which would have been day 8). As much as I prefer even numbers, I'd rather have him home sooner! So, my husband and I stayed in a "family" room on the floor, inside the NICU and got the video watching out of the way. You have to watch a video on how to hook up a car seat, bring in your car seat to show them that you bought the right kind for newborns, watch a video on breastfeeding/bottle feeding (I did breast feed Thomas), and watch a video about parental stress and who to call for help. We were given gift bags of formula (he had to have his medicine mixed with formula since it broke down the breast milk), diapers, and so forth. We were given extra blankets. We were piled down with stuff. But we signed all the forms needing singing and so that when the doctor gave the okay the next day, we'd be all set.
  
  At about 11:30 p.m. the doctor came over and asked if we wanted to take our baby home now! I was so excited! I said yes. I think I just pestered them too much they couldn't stand it. LOL He said the test results were all in and looking good and Thom's seizures were under control as he hadn't had one since day three. That really it was only time of day that they would not release him traditionally but if we'd sing the discharge papers, he'd be okay with T coming home! Oh, I signed fast... lol He was okay to come home.. and I wanted my baby home with me!
  
  This is the end of the story of his birth but by no means the end of his story! Leading up to November 1st and beyond, I decided to share T's story with y'all as part of the Autistics Speaking Day event. I will also be on Twitter on Nov. 1 starting at 10 a.m. (@Heather_Sedlock) as part of The Coffee Klatch's 24 hour chat event to help further autism awareness, understanding, and acceptance through their Communicate to Educate event as a guest moderator. I look forward to seeing you there! Please click here for more information about TCK's event.
  
  

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