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When Tom was first born he had his share of medical problems.
I am willing to share Tom's medical information, but I would also like to share what it was like on a day by day basis - because this is the information that I really needed at the time.

A few hours after Tom was born my nurses cut me loose, and allowed me to travel in a wheelchair to Tommy's bedside in the Neonatal Intensive Care Unit (NICU). Tom had been intubated (had a tube down his throat to allow him to breath), had an IV going into his belly button providing medications and food, and was covered with wires. The baby was not in an incubator - but was on a four-sided plexi-glass tray with a warming light above. Tom was surrounded with monitoring equipment - which sounded an alarm several times during my two hour visit.
The equipment was quite scary and intimidating. I wanted very much to touch Tom, and the nurses were very encouraging. The nurse caring for my son showed me what kind of touch he would find reassuring. I had always stroked my babies before - but this special guy needed gentle pressure.

I hadn't really realized that there was a serious problem until then. I thought Tom was just immature, just had a complicated birth. I had no idea for what we were in for.

I asked what was wrong with my son, and got a lot of technical jargon. After repeatedly questioning the physician I discovered that my son had low muscle tone and was unable to breath on his own. This was his general condition , true - but the Physicians seemed to give as little information as possible.

*If you find yourself in this position make sure you insist on information from your child's Physician. Be persistent and get all of the answers you can. If you have a child with an undiagnosed disorder, you will be repeating your child's entire medical history frequently, so learn all you can. The NICU was large and there were many infants there - so we assumed that the Doc's had seen it all before. We thought that whatever was wrong with Tom was common. Later we discovered that almost every child there had been born prematurely, so they were there for very different medical reasons.

I did notice a few things that worried me - but as I was no expert in the field I thought my son's differences were because of his current problems - not an underlying condition. When I would hold him he would stare at the privacy screens surrounding us (a frame with fabric stretched on it to provide privacy during nursing). He seemed interested in the patterns of the fabric, but never took any interest in looking at me. My last two sons; and a daughter from an earlier relationship had all sought eye contact in the first days. Tom had no such interest. The baby also had very low muscle tone. If I moved suddenly - he did not respond with the normal infant reflex of tensing. I did not allow myself to be worried about these differences. I assumed the Doctors would tell me if anything was wrong.

The medical staff did have some serious concerns about our son right from the start - but we didn't find out until we ordered a copy of the medical records. Then we discovered all kinds of documentations we had never heard anything about. The Neonatal Resuscitation Team was there for our son's birth - and we just assumed they were a regular nursing team.

*Physicians are honest in my opinion - but most of the people I have met on my journey with Tom do not like disclosing information until a diagnosis is made. If your child has not been diagnosed with a specific problem - the Docs do not seem to feel comfortable discussing probable problems or complications a child may later face. In short, Physicians are not willing to make a guess. If your child has an undiagnosed disability keep demanding information until you get something. There are services provided by state and federal agencies in the US that are really wonderful - and if you don't know your child really needs the help you will never apply!

* Request to see your child's records from time to time. We found a crucial error in our son's treatment that could have cost him months of treatment (they thought they had tested his chromosomes, but were reading someone elses results). His Chromosomes were not tested until he was 11 months old - after I pointed out the error.


I returned to visit my son several times his first night - just to watch him sleep. In just under 24 hours my Tom was completely off oxygen and was breathing room air. The medical staff seemed much more optimistic about Tom's health with the speed of his improvement. Tom wore only half of the wires I had seen the day before, and he looked just beautiful.

Unfortunately, Tom stopped breathing one time a day every day for a week. The NICU would not release Tom until he had gone for three days without an apneic episode (if he didn't stop breathing once for three days).
Finally - he made it! I was so eager to take him home by then - I was eager to go home. I really had a rough time myself - click here pre-moms - so you can see just what not to do when your baby is in the NICU.

A nurse trained me in Infant CPR (luckily enough, I had already taken this very CPR course a few years earlier, so I already knew all about it. I would have been terrified if it was my first time doing this training - right before my son was to come home.
We were also trained in the use of an apnea monitor, and we were sent home with one.

* if you ever need a home monitor - you will find out just how loud they can be. I recommend putting one sock inside another and placing this over the speaker - and then holding in place with a few rubber bands. The unit we got was just so loud it terrified the baby and woke up every person in the house. The first few times everyone was trying to get to a fire exit! We were able to hear the monitor anyplace in our home with the sock muffler. Try your's out and you'll see.

Our son came home for the first time on 10/?/2000. I will include this information here - as he was only home for one week before returning to the hospital.

We were so pleased to have our baby home at last. Our two older sons were thrilled to be able to spend time and touch "their baby" at last. Children were not allowed in the PICU, so our boys had never seen Tom up close before - and he was all the more fascinating for the wait.
We went out and bought really small baby clothes. Blake and Zack were so large at birth that they went into 3-6 month size almost immediately so we didn't have anything that would fit the poor boy! Friends bought us a lovely pre-mie sized outfit - and it was really the only thing we had that fit right. I had attempted to use a breast-pump and had always tried to breast feed in the hospital - but Tom wasn't able to get enough food this way. He had difficulty sucking and the Physicians felt he would get more food through a bottle. His food intake was a concern so the Docs wanted to know how much the baby was eating.

We religiously used the baby monitor. The unit we were given measured both apnea (not breathing)and bradicardia (dangerously low heartbeat). The monitor showed the results of any alarm with a flashing light so you would know why the monitor had gone off. The alarm sounded many times - but it was never the apnia monitor that went off - it was always the bradicardia alarm that sounded off. I told my son's pediatrician about this - but as my son had never had a spell of bradicardia during his stay in the NICU he didn't think much of it. I was to discover later that nearly all "alarms" were caused by parent error and not an actual problem - so this was not an unreasonable assumption by our family pediatrician. After a few days Tom began to get diahrea while eating the same formula the Physicians had been requiring during my son's stay in the PICU. I called my son's pediatrician, and he suggested that the diarrhea might be caused by something in my breast milk, suggesting it might have something to do with my diet (as I am a big curry fan, I thought that my addiction to hot chili peppers was the cause. I cut off all breast feedings and gave up on trying to pump milk as I was having little success with that method anyway.
I believe this was a big mistake on my part - I may have been able to have produced more milk eventually. Breast milk is so good for a baby - especially a baby with special needs (they can use all of the advantages they can get). Although I had successfully fed my first two boys by breast, I was having a terrible time using a pump. I was doing it correctly and frequently but the milk production just kept going down. I felt I was completely failing and decided to just quit the whole thing.

Cutting out breast milk did nothing to change my son's health. Each day his dihariiah became worse. I was quite concerned and I called my physician every day. There are so many nervous new mothers - I don't think they took me seriously until after a week of calls I stated that the baby was also running a fever. Then I was asked to bring him into the office.

After a short office visit Tom's pediatrician found him to be under his birth weight and ordered him into the Pediatric Ward of the hospital. I was horribly distressed - and quickly drove my son back to the hospital. The reason for this hospitalization was for dehydration and I was hopeful that he would become well soon and be able to return home.
After my son had been admitted, I explained to the nurse that my son was on a monitor at home - so they decided to put him on the hospital monitor just to be safe.

I stayed in the room at my son's side. The nurse woke me up in the middle of the night. He told me that my son was exhibiting severe bradicardia (exactly what the home monitor had been reading). After watching the hospital monitor for a few hours I discovered that Tom's heart rate was dropping into the 30's from time to time. I asked for the normal heart rates and fund that 120 - 180 beats per minute were the accepted average. My son was in serious danger. Had my son not become sick we would not have returned to the hospital and I could have easily lost my Tom. After experiencing this scare - I have to wonder how many SIDS kids have had the same problem?

Early the next morning my boy was transferred to the PICU. Click here for the next part of the story.