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The Pre-Tom Time (pregnancy)
This story starts before our boy made his appearance.

This is not a list of medical tests and detailed data. This is the experience of one mom carrying one special boy. The more detailed data will come later.

Tom was a surprise baby - unplanned but lovingly anticipated. Tom's ultrasound image at approximately 6 months Our family already had two boys, Blake and Zackariah. Both boys were healthy and came with no "factory defects" (our term for birth defects/genetic disorders).

Tom at 6 months gestation

Blake and Zack were almost exactly 2.5 years apart in age. After we discovered that I was pregnant we quickly did the math and found that this next child would fall right in line - 2.5 years younger than our last boy. We were pleased.

I had several miscarriages between Blake and Zack, and an etopic pregnancy a few months before Tom's conception. I also had problems with pre-term labor with both Blake and Zack. Blake was 9.5 lbs at birth, and was too large for me to deliver vaginally (believe me, I tried - ouch!) so he was a cesarian birth. After reading the consent forms for a V-BAC (a vaginal birth after having had a cesarian) we decided to play it safe and have repeat cesarian for our following children. I had a really bad time with post-partum depression after my first son was born so my physician felt I should take an anti-depressant during my pregnancy with Tom. I am also a moderately severe athsmatic and am required to take a whole regimen of medications. I could not cut these medications. Doing so would have endangered the fetus - depriving the baby of oxygen.
As you can see, I had a complicated medical history going into this pregnancy. We had two healthy children despite all of my complications and it really never occurred to us that this one would be any different than his brothers (though we hoped this child - our last might have one less appendage; might be a girl in other words).

I was never a dainty waif, but before my sons came along I was relatively slender. By the time I became pregnant with Tom I was downright hefty. I decided to ride my excersize bike religiously to keep off any extra poundage. At around six weeks of pregnancy I began spotting (just a bit of vaginal bleeding). This is a major sign of a misscariage in action - so I called my obstatrician immediately. He ordered me off of the bike and into bed. I rested as much as I could, though with a 2.5 year old and a five year old I really didn't get much down time. My OB explained to me that bleeding a bit is fairly common in early pregnancy. He also said that it was quite common for the body (mine) to misscarry if there was a problem with the baby. I was told that if this was the case, no amount of bed rest would be able to save the pregnancy.
I am a glutton for total honesty - so I really appriciated this OB right from the start.

My husband and I had discussed the possability of having a child with disabilities ealy in our relationship. We had both decided that we could deal with pretty much any physical handicap, but that neither of us would welcome a deficit in mental faculties (in otherwords - as long as the kid is bright we are ok with it). Ater our first son was born, we decided that it would be unfair to him to have a child with a disability - that it would take time and attention away from him.

I can only laugh about what we thought - what we decided. We didn't know how incredible a "Tom" can be. Neither of us had much experience with people with handicaps, and it's so easy to write off what you don't know about. Also, I feel very strongly about racism, about bias - but it never even occured to me that the idea of not carrying a child to term because they might have a handicap seemed ok to me. Isn't that the worst bias of all? "We, your parents, find you less than perfect and condemn you to death." Well, we were stupid - but we all are from time to time.
Anyway - it seemed to make sense at the time.

The most silly thing about this was that we thought if we were to have a child with a disability, it would be one that all those pre-natal tests would pick up. Our boy Tom is still undiagnosed - and we thought those pre-natal tests would keep us safe from surprises. LOL (lots of laughs, for those of you unenlightened by internet jargon.) The silly thing is, I am so grateful that there were no tests that could show us that something was different (not wrong - nothing about Tom is wrong). If we had known that we would have a baby with so many problems - we would never have had him at all. That is a sad thought - because I could not live without him now that I know him. This is the first time in my life that I have been sad about technological progress. 20 years from now people will abort babies like my Tom - never knowing what they have given up.

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Anyway - I did not loose the baby. I quickly discovered that I was much more nauseous in this pregnancy than I was during my others. I thought nothing of it and everything else seemed to progress normally. My weight gain was normal for my size and all prenatal tests came back with normal results. I had several ultrasounds during early pregnancy just to confirm the age of the fetus (my due date). All of the ultrasounds were completely normal - and we soon knew we were expecting a boy.

I have always been big as a tank during pregnancy - and this time was no exception. As my pregnancy progressed into my seventh month my OB felt I was a little larger than I should be (belly-wise).
He requested another ultrasound. The physicians discovered that I was carrying extra amniotic fluid - but that the baby was a bit small. This was quite unusual for my pregnancies, but the Doc's didn't really seem alarmed at all. I was to find out later that major differences in pregnancies (like fetus size, weight, health problems, etc.) can be a clear indicator that there is a problem. I had previously had two healthy children who were quite large for dates. This must have caught the Ultrasound Technician's attention, so he asked to monitor fetal activity twice a week.

Now don't laugh too hard - but this never really concerned me much. I figured that if my child had a medical problem, science would fix it. You see amazing surgeries on the Discovery Channel every day, right? My child couldn't have a birth defect; I had taken the prenatal tests. If there was a problem, it would be something science could fix. It had to be.
My first test seemed to go fine - but I was later told that I was having very mild contractions and that there had been a slight drop in the babies' heartbeat during my contraction. They did many other tests but never found a problem again.

By my mid seventh month I was having regular contractions. I found myself in the hospital regularly to monitor contractions and administer pitocin to suppress them. I spent many afternoons there, as well as making several overnight stays. I did have a history of pre term labor - so this did not surprise me. My family life (my ex hubby and I) had become very stressful; and I believe I spent more time in the hospital not because of pregnancy problems but because I was afraid to go home. There was never any physical violence - but the emotional stress was unbearable. I hesitate to share this information, but I still must wonder if we somehow inadvertently caused our son's problems. Also, if I am able to relieve just one parent's stress over blame I believe I must be as honest as I can bear to be.

My first two boys both came two weeks early. This is perfectly normal - apparently I take 38 weeks to create a full term baby rather than the average 40. Some ladies require 42 weeks (and they have my complete sympathy!). When my son reached 38 weeks of gestation my OB pulled me off of the anti-contraction medication and told me to get ready to have a baby! Needless to say, I was thrilled.

A few days later I started to have strong contractions. We called our OB's office and set off to the hospital. My regular OB was not on that day - and after several hours waiting for the scheduled cesarian section the physician ordered an anti-contraction medication for me and sent me home. The next day, the contractions began again - and we returned to the hospital - hoping to have a baby this time.

My OB was on the clock this time, and our boy was delivered right at the stroke of midnight. We got to choose our son's birthday, as either September 28th or 29th was valid - so we chose the 28th.

In my previous cesarian sections the nurses would clear the airway (nose and mouth) and check the baby out briefly before bringing the baby to my side. This time - the nurses seemed conserned and asked the physicians in the room for assistance. I quickly realised that there was a problem of some kind. One of the doctors said he would call the NICU (neonatal intensive care unit) and tell them the nurses were on the way. The nurse holding Tom stopped and showed him to me for only an instant. I saw a child much smaller than any I had ever given birth to before. The baby was blue and was not crying or moving. Then the nurse and Tom were gone - on their way to the intensive care unit.

On television, you see babies with problems loaded into a special cart for pre-term infants. As the physicians had no indication that there was a problem there was no cart standing by. My son was carried off at a run by two very worried nurses, wrapped in a few blankets.

My husband and I had decided that this was to be our last child, and I had chosen to have a tubal ligation (get me tubes snipped in otherwords). It really did not occur to me how much consern there was over Tom's health until my OB asked me if I was sure I wanted my "tubes tied". I felt strongly that Tom would be just fine and told them to "do the deed".

Tom's journey continues here.