Jewels In His Crown

The Story of Jairus

2011-07-18T14:39:00.014-04:00

Pete and Repeat

Micro-what?

Larger than Life

The Bad Side of Good News

Little boy Arrives

PRS 101

Breathing Should not be this Hard

NICU Ropes

We made it to 3C

Day 43

Poor Little Deviated Septum

Going Home

It takes a Village

Jairus at 4.5 years old

Going Home

2010-04-26T21:57:00.002-04:00

After many meetings and opinions, calls to Sick Kids and consultations with 'the protocol', they finally decided to let us take Jairus home on May 29th, 2001.

Throughout his care, the specialists had often called Sick Kids and were actively following a protocol created by them. However, Mac also actively reinterpreted it too. The swallow study was one of those deviations--Sick Kids insisted that babies couldn't drink from a bottle with a breathing tube in, but Jairus did it. They also keep, or kept, their PRS babies in hospital for an average of 6 months, but Mac let us go at 2 months. I was always grateful we were close to Mac and not Sick Kids.

By the time the big day arrived, Jairus' ENT had hinted that she wasn't completely comfortable with him leaving, but by that time, it was too late. Everything was in place.

It was such a wonderful, yet scary day. I was so used to just sitting in his hospital room that suddenly, I didn't know what to do with him!

Leading up to the discharge, Jairus went at least 6 hours a day without his breathing tube. After he came home, the ENT would up that by an hour each week.

It was a very tiring first week as he was feeding by tube every 3 hours and while I was used to that during the day, I had been spoiled at night since the nurses did it. He wouldn't even wake up for his 3am feeding so after about a week, the pediatrician agreed to cut it out and add the volume to the other feeds. I continued to pump milk for him, determined that he wouldn't get anything but breast milk. I took him to my lactation specialist soon after he came home and she had me try a few techniques and some equipment, but it was inneffective. He just did not have the strength or coordination to nurse. We kept trying him with the Johnson Mead bottle before every feed to try and exercise his jaw.

Soon, Jairus was going all day without his breathing tube. It was awful to put it in at night--he hated it. By now, we knew how to change all his various tubes, but we weren't always confident to do it--especially at the beginning. I'll never forget the first time we need to replace the weighted ng-tube. Jairus had been in to see his ENT and she had changed his breathing tube out with a different type, and then they had put the ng-tube down. I watched the nurse check the placement and recognized the way the syringe popped back. It wasn't in right, but I wasn't confident enough to challenge her. I went home instead and, of course, his feed wouldn't go down. We ended up back at the emergency room for 6 hours, waiting for someone to pull the tube out, discover it was kinked, put it down again and then send Jairus for an x-ray (even though I insisted he'd never been x-rayed before the check placement). He missed 2.5 feeds and was not a happy camper. I vowed that the next time, I would do it myself.

I got my chance 2 days later when I woke up and he was lying in his bed, gleefully waving the tube around. It was just the beginning of 10 months of changing that tube.

Jairus went back into Mac about 2 months later for a sleep study to see if he was truly ready to go without his breathing tube full time. It took two days, but he passed with flying colours. Unfortunately, it ended with him coming down with pneumonia, a highly stressful turn of events that included projectile vomiting, chest x-rays and numerous attempts to draw blood, ending with a heel prick (why don't they listen to the mommies?).

We were finally starting to establish a 'normal' life though and it was so nice.

Poor little deviated septum...

2010-04-25T23:20:00.003-04:00

Late May, 2001 7 weeks in hospital

We had learned early on that Jairus' breathing tube seemed to fit better down his right nostril than his left. After a number of weeks with the NPT, I was starting to become concerned that always putting it down the right would make it irritated and perhaps even more enlarged.

We had his ENT come and take a closer look in Jairus' nose to see what the problem might be. She told us that his septum was deviated and his left nostril generally...weird. Probably not the word she used, but she said that it was just oddly formed. Still, she said it was worth trying the NPT in that side to give the other side a break. So we did.

It was pretty much a disaster from the start. Jairus was frantic from the moment they tried to place the tube and the RT found it extremely difficult. An hour later, he was still crying. I called the ENT and she said to give him some Tylenol and persevere. He seemed to calm and we left for the night. The next morning he was running a temperature and was still upset. I felt awful and immediately called for an RT to approve my taking the NPT out. It took an hour for one to come and I was severely tempted to pull it out myself. Finally he came and within minutes, Jairus was calm and settled. We left the NPT out for five hours that day and he did very well.

He still had his ups and downs however. A few days later, he only lasted an hour and a half and desatted twice. Tubes back in for that day.

Still Jairus' various specialists were starting to talk about sending him home for good....

2010-04-25T22:45:00.002-04:00

May 12, 2001 Day 43

Today Jairus was on the annual Mother's Day Telethon that Mac has been doing for years. I remember singing on it with my choir many years ago. They do features on all sorts of kids that are in the Children's Hospital, and this year they wanted to "interview" Jairus. I so wish I had a digital version so I could post it here! (I'll have to see if James can do something about that....)

We were nervous that he would get upset and I would have to try to calm him down on TV, but he was perfect: cute, wiggling, bubbling and a little cooing.

Another big event this week was a breathing trial. I had decided that I wanted to have my son at church with me on my first Mother's Day. At first the pediatric doctor was hesitant, but when she realized that it was Mother's Day, she set her mind to making it happen. She set the terms: Jairus had to go one hour without a breathing tube until she'd be comfortable letting him go out for the morning.

Rico the nurse came while Jairus was sleeping and slipped his tube out. A few minutes later when the doctor came, she was impressed at how well he was doing. I spent the next half an hour praying.

Then the doctor sent word that I should feed Jairus. Yikes! I had been scared to try while he was without a breathing tube. But all went well. Sometimes he would squirm about and then his sats would drop, but if I shifted his position, they'd usually pick back up. In total, Jairus went not just one hour, not two, but three hours without a tube that day!! I was thrilled. That Sunday, I was a mommy for all the world to see....

Not that it went off without a hitch.

We got to the hospital just past 9am that morning and not one minute later, Jairus started throwing up. I could see that he had thrown up earlier but no one had been in to clean it up. He threw up about 3 times and probably lost his whole feed. James was concerned, having not really seen Jairus throw up. I was concerned because now I had to clean him all up plus a number of other things and get to the church for an hour later.

We manage to get him ready to go and into his carseat and away we went with me in the back seat (something I swore I'd never do....but I told myself this was different :-)

Everyone was so excited when we got there--we were pretty much surrounded the entire morning. Jairus was really good during the service; I left him in his seat for stability for most of the time, although I was dying to hold him and show him off. We left the service part way through to do a tube feed--even then, we had a crowd around watching. Everything went fairly well though and we headed back to the hospital, happy to have had our first 'normal' morning at church.

Over the next 10 days, we took Jairus out 3 more times. I remember one visit realizing that the nurse had sent me home with the wrong feeding tube-it didn't fit the port on his ng-tube. Fortunately my mom had a 10ml syringe in the house so I painstakingly filled it over and over to get Jairus' feed down.

The visits were great for my confidence, but awful for my emotions. One evening after having Jairus home for most of the day, I walked back into the bedroom to see the empty little baby bed and his sleeper on my bed....sad times.

We were still trying to feed Jairus by mouth, but the most he could manage would be 15mls....and it took 1/2 an hour for him to get that down. It was progress though, and we were happy to see it.

We Made it to 3C

2007-03-02T22:04:00.000-05:00

Sorry, not the best photo....but here's the scrapbook page of the 'big move'. Between 5 and 6 weeks old, we got word that Jairus was ready to move to the children's ward, and a bed had come available. Good-bye isolette, hello big-boy crib.

He was still so tiny, and I was extremely nervous leaving him. I remember crying as we left the hospital that night. His cry was so tiny that I was sure the nurses wouldn't hear him, so far away at the nurses station. And what if he threw up? They wouldn't hear that either, and he could choke...

Of course, he was fine. A few days later, he went for a swallow study. Now that he was in the children's ward, he got a new occupational therapist, Anne. Aune (Ah-na) from the NICU was still around alot though and the two ladies accompanied us down to the x-ray department. The biggest concern was that between the NPT in one nostril to keep his airway open, and an ng-tube down the other side for feedings, Jairus was going to find sucking on a bottle quite overwhelming. I think I've mentioned before that our 'team' had been getting alot of suggestions from Sick Kids in Toronto, and their protocol insisted that babies with NPT's could not/should not bottle feed. But we were going to try it anyway....

He did awesome. He drank like a pro and didn't aspirate anything. Aune was so excited that she nearly went running back to her office to phone Sick Kids and report our success. It was so exciting! We could now try him on a bottle before his feeds. At first we used a very small bottle with a preemie nipple. Cleft babies almost always have troubles sucking well, so there's a few options out there---the Habermann feeder was one, but no one at Mac had really used it much and I couldn't figure it out....We ended up using the Johnson-Mead squeezie bottle. It was a sort-of flat bottle made of really soft plastic. We couldn't use it very long because the plastic would start to break down after washings, but we could squeeze it really easily to help Jairus eat.

Jairus had a roomate on 3C, a little Chinese boy named Victor. I don't know exactly what was wrong with Victor (of course, the privacy issues prevented many moms from chatting much) but actually, Victors mum was never there. It was really sad. He was about 4-6 months old I think, and he had had surgery in his tummy for some problem that I think was quite serious. Victors mom and grandma would show up once in a while, maybe once or twice a week (the grandma much more than the mom) and she would dance around his crib saying something in Chinese that sounded like 'ha-now'. I remember having to call for the nurse a number of times for Victor because otherwise, no one else would....

Finally, since Jairus was out of the NICU, family could come and see him. Many of my siblings weren't old enough at the time (although we snuck 14 year old Lauren in) to come into the NICU and they were bitterly disapointed to have to wait nearly 6 weeks to see their first nephew. I remember once taking him over to the glassed-in door of the NICU while they all waited on the other side for a glimpse--I think the nurses felt badly....
But now they could come to the room and hold him--Auntie Maya, Uncle Ben, Auntie Emma and Uncle Paul. (I'll have to scan some of those in later). Uncle Ryan came and read our childhood favourite "Fish is Fish".
We settled into a new routine and became familiar with the ward. We left Dr. Marrin behind in the NICU and met new pediatricians on 3C--they rotated through much quicker than in the NICU--I think every week. Trying to save on take-out, I searched the internet for microwavable caseroles, as the kitchenette we were allowed to use didn't have a stove. I learned how to roll up blankets all around Jairus to make that big crib more comfortable for him. The nurses continued to teach us how to tube feed him, change his NPT and adjust his O2 sat probe--which always seemed to be coming loose and scaring the bejeebers out of us!

Shortly after graduating to 3C, Jairus made his television debut.....

NICU Ropes

2006-11-06T15:13:00.000-05:00

I was discharged from the hospital when Jairus was 6 days old, a very hard day. To pack up my things--including the baby clothes that I thought Jairus would be wearing home when we left....to get in that elevator without the car seat we thought we'd be carrying....to arrive home and walk in the front door the same as we left--just the two of us. It was a very depressing thing.

But we turned right around and went back to the hospital. Over the next many weeks, and James had to go back to work, we fell into a schedule. As soon as I woke up, I'd call in to the NICU and get a report of how his night went. My mom would pick me up a little later and we'd go into Mac. We'd spend the morning and our lunch hour there with Jairus, then mom would have to leave around 1:30 or 2 to get home for my siblings return from school. I'd be on my own for the rest of the afternoon, until James got there around 7pm, as he was commuting to London at the time. We'd usually stay quite late, heading home around 10 or 11 pm. We'd often phone once more before we crawled into bed to see if Jairus was settled for the night. And then it would start all over.

In those first few weeks, we had a few meetings with the ENT specialist, Dr. Reid, and the neonatologist, Dr. Marrin. There was also a few other specialists that would be in on it, but I don't exactly remember now. Respiratory therapists, Occupational therapists, an endochrinologist, a geneticist. The biggest question in that first month was whether Jairus needed to have a tracheostomy. Since his graduation to the naso-pharyngeal tube, his breathing had improved some, but his sats still often dropped below 90%.
James and I despaired over the thought of Jairus needing surgery so soon, and so young. And the idea of this hole in his neck, with an instrument inserted into it to let him breath was intolerable. He would have it for at least a year, maybe two, and it would mean that we would never hear his voice. I couldn't stand the thought.

Meanwhile, he was tolerating breast milk feeds through his naso-gastric tube very well and gaining weight nicely. I was very proud and kept pumping!

In the end, we decided NOT to have the tracheostomy done. Fortunately, Jairus' case was considered moderate, which meant that our decision was not opposed by the medical team. That was a relief.

You can really see in this picture with my dad how small his chin was (actually, you can't really see it at all!)

During the six weeks that Jairus was in the NICU, the nurses patiently (most of them) taught us how to take care of Jairus' special needs. By the time we brought him home, we'd even learned how to remove and replace both his breathing and feeding tubes.

As he grew bigger and his breathing stabilized, the RT's started instituting 'tubeless' times. These were terrifying. At first it would only be for a minute or two--the RT would come to change out his tube and would just wait...and watch to see how he did without it. One time the RT 'forgot' something he needed to do the change and had to go back to get it. He left a tubeless Jairus--and a completely panicked mum. It was about a five-ten minute wait and I stewed the whole time. Inside, I knew it was good--he needed to learn how to breath without tubes, but it was one of the scariest things.

Then just before he was six weeks old, we got some great news...

Breathing Should not be this Hard

2006-09-16T14:37:00.000-04:00

I believe it was about four days after he was born that they had to intubate him. I remember we had left the NICU fairly late the night before, distraught to leave him because he had been quite upset. The next morning when we arrived, the nurses told us that he never calmed down, and his sats kept dropping lower and lower. Finally, they were forced to intubate him.

When I saw him, it was the first time without tape and tubes all over. He simply had one tube peeking out the corner of his mouth, like he was sucking on a straw. He was sleeping. And for a short, blessed time, not struggling to breath. I'll never forget the sound of his stridor--the sound he made when he fought to get air in. A terrible choking, rasping sound. But for now, he was calm and his chest/back raised and lowered peacefully. As upsetting as the intubation was to us, I was so glad for it.

Unfortunately, it was short lived. By that afternoon, he had coughed or pulled it out, so we were back to square one. I think it was around this time that the ENT suggested the 'trumpet' breathing tube. This was a nasal-pharyngeal tube that went in one nostril and a short ways down the back of his throat, just far enough to get past the offending tongue. This kept his airway 'patent' or open. The tube stuck out his nose about 2-3 inches and we were supposed to keep this little humidor on the end so that the inside of his nose and airway didn't get dried out.

As it was, he needed to be suctioned a fair bit. This was always an unpleasant affair, that we soon learned how to do ourselves. There was a bit of a protocol to get by--laying out all the parts to the suction tube, putting on a clear plastic glove just the right way--not touching it with your other hand, opening the pieces---of course they're all one use, disposed of immediately after, attaching it all together, and then shoving the thing down his nose. Unfortunately, it was necessary at least every 3 hours, sometimes more often, because his 'secretions' would build up and get in the way of the breathing tube. If his sats were low, or we could hear more raspiness then usual from his breathing tube, then suctioning him was the first consideration.

One of the most important pieces of advice we were given, was to learn to watch his colour. It didn't take long after he was born, to find us watching his O2 sat monitor more than him. We lived by those numbers. But it was a machine, and not always reliable. He would kick off the probe and send the numbers spiraling down. I'll never forget an early experience holding him and watching the oxygen numbers go down, and down. I started to panic and called out for a nurse. She came quickly, and, taking one look at his dusky face, took him from my arms and moved him about, spraying an oxygen tube across his nose. He picked up quickly, but I took much longer.

It was around this time though that emotionally, things were looking up. I had gotten used to pumping milk on a schedule, I was discharged from the hospital and feeling more human. We were learning how to take care of his various needs and not feeling so helpless. And we started to take a look around and realize how blessed we were.

Our son was 6 pounds, 7.5 ounces. In the NICU, that was considered huge, as most babies there were premature. Our son was beautiful, with lots of dark hair and ruddy skin tone. Many other babies were too tiny and early, with many more tubes, translucent skin, no hair and continually beeping machines.

One evening when we were feeling especially upbeat, a new baby came in. Jairus was in a covered isolette, with two little portholes that popped open on hinges. The whole front could come down to take him out, and his tubes and IV were threaded through holes at the end of the isolette. At this time, McMaster had one NICU made up of two large rooms, so you were only feet away from another baby, and sometimes another mom or couple keeping vigil. We rarely interacted however. The nurses strongly discouraged any interest in the other babies and would scold you for allowing your glance to hesitate on the other tiny patients. I found all that intensely unnatural. The families in the NICU were all going through crises and many of them had no other family to help. We needed the support each other could give, especially as some babies improved. But the nurses were only concerned with the privacy of each baby and their parents. (More on that later)

But this evening seemed different. Perhaps it was because this was early in Jairus' hospital stay and we simply hadn't learned to 'mind our own business'.

This new one came in on a different crib. It was open all around, with a lamp attached to one end, extending over the top like the light the dentist angles to see in your mouth. If he was wearing anything, it was only a diaper and I wondered how this newborn was staying warm. He had more tubes and wires than I could count and he wasn't moving. He lay on his back, arms and legs splayed out unnaturally. He didn't cry and it was hard to tell that he was breathing. I knew he must be though, because the machines would alarm if he stopped.

The rule in the NICU was that only two people were allowed in per baby. If James and I were there, and my mom came, one of us had to go out so she could come in. This must have been a special situation though, because as we watched the baby wheeled in to a pre-set location in the room, four distraught relatives followed: mom and dad, grandma and grandpa.

They were Italian. I grew up in Stoney Creek where there's a large Italian population, so I could tell right away. Mom was short and dark haired, still in hospital clothes. Dad was tall with dark hair slicked back and gold jewelery flashing. I don't remember the grandma, but it was grandpa that caught most of my attention. A older picture of his son, his shiny black shoes moved down the aisle soundlessly. His black pants and dark golf shirt were pressed and immaculate. His hair was also glistening combed back away from his face. His gold necklace and wide gold watch spoke of their wealth. It was a crass thought, but my first impression was that they looked like the typical movie style mafia family. You almost expected to see a handgun wedged in the back of his belt as he passed.
We watched this sad parade as it ended not far from Jairus' isolette. It was impossible to tear our eyes away from the palpable grief as they gathered around the baby. I was moved to tears to watch this hulking, self assured grandfather as he wiggled his finger into the baby's hand until the tiny fingers curled around his knuckle. And he wept.

Someday the Lord will tell me what became of that baby.

Little Boy Arrives

2006-06-13T14:53:00.000-04:00

Despite what I'd heard about induced labours being tough, after three babies now, I can say that Jairus' was the easiest.

They started the induction about 11:30 pm on March 29th. I didn't feel anything start until about an hour later. I was lying in bed, James and Mom were around, trying to nap in chairs and suddenly I felt and heard at the same time, this big 'POP'. I think it was my water, but nothing came gushing out. But then I felt it. The pain...

I was in labour for another 4 hours and really, for my first time, I think I handled it quite well. James was a huge support, breathing and holding my hand through each contraction until I started to feel like things were happening on their own. Only a few minutes of pushing--maybe 10, and Jairus was born.

They laid him on my tummy and he was fairly blue. I was so alarmed and wanted Tamara to take him immediately and get him breathing. She did so and a minute later, we heard him start to cry.

The neonatologist who was on call for his birth came in and started to examine him. I could hear him mentioning things to the nurse who was charting, but some of it I didn't understand. I did hear him say 'cleft palate', however.

Through all the ultrasounds, the cleft palate had not been spotted. It's understandable--the palate is harder to see than a cleft lip. Still, it was a little bit of a shock, as I just hadn't thought about it.

Soon they wrapped him up and Tamara brought him over for me to hold. He was pretty alert for all he'd just been through. At the time, his breathing seemed fine.

I only had him for a few minutes, and then they took him to the Level II nursery. James went with the baby, and mom stayed with me while the midwives finished up. Not long after, James came back very concerned. They had told him some of the other issues they were finding with Jairus and more importantly, he was really having difficulty breathing. They were going to transfer him to the Neonatal Intensive Care Unit.

It was a number of hours later until I saw Jairus again. A nurse who came to check on me asked all about the birth and Jairus and whether I'd seen him. I still hadn't slept from being up all night giving birth (this was now around 9-10am) but she insisted I go now, down to the NICU to see him. Important for 'bonding'.

I'll never forget that first visit. As James wheeled me in, I passed by many other sick babies in their isolettes. It suddenly occurred to me that I didn't know which one was my son. Of course I couldn't expect to recognize him at this stage, but I was still embarrassed to have to ask "Which one is he?".

At first he had what looked like a strange soother in his mouth, but it was actually a breathing tube. It went just to the back of his throat and he was quite uncomfortable with it. He was lying on his tummy to help keep his tongue forward and only wearing a diaper. I reached in and touched his soft little shoulder, all dark red like I was when I was born. He flinched and cried and I felt so badly that he'd already come to associate touch with pain. I felt a strange guilt that he had to be born--he was so much happier and safer inside me.

Those first few visits I just sat and cried, and prayed and sang to him. It was one of the lowest times of my life.

The Bad side of Good News

2006-05-15T14:46:00.000-04:00

The weekend we were doing our prenatal crash course, I started off the Friday morning feeling especially poor. Very crampy, achy, couldn't even get comfy on my pillowed couch. By evening I decided to go into Mac and get checked out.
15 hours later (ok, 5) I had the dubious prognosis of a bladder infection. I didn't believe it though.

Sure enough, the following weekend at an ultrasound, the tech started off by putting the probe quite low on my belly. She clicked on the monitor and what did we see? A big round head.

Bladder infection my eye.

I was SO relieved when she confirmed (at least she could tell me THAT much) that Jairus had finally turned to the proper position. My fears of c-section were significantly reduced.

I continued on however, in a few more weeks of intense discomfort until one night I hit upon a great idea: I started sleeping across the top of my bed with my back against the headboard. I was thrilled when I woke up the next morning and realized that...it was the first time I had woken up that night. Eureka!

However, it wasn't my brilliant idea that had finally brought relief. At the next ultrasound, I had a tech that I was now familiar with, a guy named Ron. I told him how I had been feeling much better--not nearly as much pain and cramping. He subversively told me that my fluid levels looked nearly normal and later the specialist confirmed it. Inexplicably, the excess amniotic fluid had just been absorbed!
The specialist also had another shocker to pass on: Jairus' profile now looked completely normal. There was no sign of the small jaw that they had been so painstakingly keeping track of.

I was strangely unexcited at this news. Everyone around me was ecstatic, but for some reason I was not released to feel the same jubilance. I still don't know why my last ultrasound was 'normal', but I know now why I didn't buy it.

Now that the pregnancy was 'normal' again, I dove into all the preparations that I hadn't been able to do before. My energy came back and I started making all sorts of meals to freeze--something I'd read would be really helpful after the baby came.

IF he would ever come... I went past my due date. One day, two days. A week. Eight, nine days. My midwife finally decided that we needed to consider inducing. The weekend leading into the 2 week overdue mark found us at Mac, 10pm at night, trying to decide if we should go for it.

And so we did.

My Little Star

2006-05-01T21:49:00.000-04:00

We interrupt this life story to bring you an important announcement...

Exciting news; Jairus, James and I have been asked to be on the Mother's Day Telethon this weekend for the McMaster Children's Hospital. I've been told we'll be seen on Sunday at 6:00pm, but I'll confirm that when I receive the letter.

This is the second time our little boy will grace the TV screens of Ontario. Having been born in March, he was still in hospital when the telethon rolled around in 2001. He was an adorable, cooing little bundle of tubes at 6 weeks old when we did an interview by his bedside.

So tune in and donate to our amazing Children's Hospital! Many doctors, nurses and therapists were used by God to save our son's life and bring him to where he is today. The McMaster Children's Hospital is a blessing that few are fully aware of!

Larger than Life

2006-04-18T14:33:00.000-04:00

It was Christmas day, 2000 when I first started getting the 'Are you going to make it to March?' comments. I really had exploded in size and this was a bit of a concern. I think I gained 10 or 12 pounds in 2 weeks. I still felt good though--I liked finally looking pregnant and pulling out all my brand new maternity clothes.

It wasn't until the new year that my midwife, Tamara, was concerned enough to refer me to the OB to have my fluid levels checked. I remember him to be an easy going, relaxed doctor with the unassuming name of John Smith. He was pretty much unconcerned, telling me that my fluid was 'a little' high, but not terribly out of the ordinary. He also allayed some of my fears about wee boy, saying that they had told him that his son had a small jaw too. He had been born just fine.

Things got worse, however. By the time I was 33 weeks pregnant, I was full term size and very uncomfortable. I think if the increase in size had happened on schedule, my body would have been able to adapt. However, my amniotic fluid levels were about three times higher then normal and the cramping throughout my back and lower abdomen left me basically immobile.

Surprisingly, another visit back to Dr. Smith yielded no results. As huge and uncomfortable as I was, apparently this was not the worst it could get. With the only solution being to syringe out the excess fluid via amniocentesis, he was willing to wait until things were intolerable.

In hindsight, I sometimes wish I had insisted that the fluid be withdrawn. Not for my own comfort—that pain is long forgotten, but I strongly believe that the stress Jairus was under during that time has resulted in long term effects. His growth was poor during that period, although the techs and doctors never admitted that. I only know that because although math is my weakest mental activity, I can deduce that less than a pound gained in two weeks is not normal. It was much less, as a matter of fact.

To add to the stress, Jairus was transverse (translation: sideways). With all that fluid, he wasn’t settling down with his head in ready position. After a while of this, my midwife started warning me that if my water should break unexpectedly early, I should get down on the ground with my bottom up, so as to discourage the umbilical cord from coming out before the baby.

Between my rising fluid and checks on Jairus’ progress or lack thereof, I was having ultrasounds every two weeks or so for the latter half of the pregnancy. It was a despairing time. I couldn’t sleep more than an hour and a half for the pain in my back. I spent a lot of time in the shower on my hands and knees trying to ease the cramping with hot water. I went to massages, tried a chiropractor for the first time—nothing helped. I spent my days propped up Cleopatra-style on the couch with numerous pillows, dreaming of all the nesting arrangements I was unable to do and watching bland daytime TV.

Meanwhile, many were praying. Family and friends all over the continent, even a few overseas. Probably more than I’ll ever know. To this day, I’ll still run across long-ago-communicated with friends who’ll ask about Jairus by name and might even mention how they prayed. It’s entirely heartwarming.

Micro-what?

2006-04-07T00:11:00.000-04:00

I was, of course, astounded. This woman hadn't mentioned anything about something being actually wrong up until this point. I was so rattled--and scared--that of course I agreed to run right over to the hospital, downing water bottles all the way, to make my appointment on time.

This would be the 2nd of seven ultrasounds during the pregnancy. Ultrasounds are so wonderful--and so horrible. Wonderful to see the baby, horrible to see something wrong. But of course, at this stage, I couldn't see anything wrong myself. They're also horrible though because of how the techs can't tell you a thing. And so intuitive females like myself spend the entire time assessing every grunt, sigh and grimace, wondering if everything is ok. It's worse when you know that something is not ok, but not exactly what yet.

Two weeks I waited after the second ultrasound, to hear the results. That was also horrible--and a blessing as well. Something was wrong around the baby's face, that much I knew. Well, my husband had been born with a cleft lip, so chances were, that's what was wrong. After two weeks of thinking about it, I came to the point that I could handle that. Cleft lips can be fixed. Babies with cleft lips can still nurse--a really important thing for me. This was ok.

But it wasn't a cleft lip.

Micrognathia was the word. Yes, gesunheit to you too. Quite simply, a small jaw. At first I was a little perplexed. So he'd have a small chin, what was the big deal?
By this point my husband and I were sitting in a meeting with a pediatrician, an OB and a geneticist. The small jaw, they said, could be an indicator for any number of conditions, but they were suspecting Pierre Robin Sequence. I'd never heard of this before. I went right home and got on the computer. Bad move. As well as finding a few sites about PRS, I found a number of the other conditions that a small jaw can indicate--and some of them were downright terrifying. Trisomy 13, for one, which is fatal within a few months of birth.

I was told that I might have a few complications with the pregnancy. Because the baby's jaw was small and not working properly, he wouldn't be swallowing as normal. I guess while little ones are in utero, they're 'practicing' their swallowing with the amniotic fluid. I could develop too much fluid as my baby wouldn't be helping the natural recycling by swallowing and digesting it.

At this point I was about 24 weeks pregnant and felt fine. It was hard to believe that anything could be wrong inside.

Things were about to change.

Pete and Repeat

2006-03-13T22:32:00.000-05:00

I'm starting over with this blog, so some things might not make a whole lot of sense for a while here. As I cover topics I've already done, I'll delete the old ones...

From just after the twinkle, here's the story of Jairus.

It took a painfully long time to get pregnant. For a while there, I was close to giving up. I know our two years is nothing compared to alot of couples out there, but it was painful none the less. We finally went for the drugs and thankfully, it took only a month.

Of course, I was horribly nervous for those first 12 weeks. That's the biggest problem with knowing you're pregnant practically as soon as conception has occurred--it's an awful long time to wait until the nerves settle down. Fortunately, it was an uneventful 12 weeks. Sometimes I even wondered if I really was pregnant! I didn't have to wear maternity clothes until I was well into my sixth month--and then it was quite a sudden thing. One day, I just couldn't see my feet.

Before this though, disturbing things began cropping up. It started with my ultrasound. How exciting, the first ultrasound of the first pregnancy. Until they call you and tell you it should be redone.
I went with a midwife, a wonderful young woman named Tamara from Hamilton. Unfortunately, it wasn't her that called with this news, but my secondary midwife whom I barely knew. From the moment I got off the phone, the questions assaulted and I was a wreck for the rest of the day. Finally, around 10pm that night, I called her back to ask some of the questions and settle my mind. She assured me that this was pretty common, nothing serious was wrong, and I didn't have to have this redone if I didn't want to.

I decided not too. The ultrasound hadn't been as easy as I thought it would, and really, I didn't want to go through it again. It was scheduled, but I wasn't going to be there.

The day of the rescheduled ultrasound, I had an appointment with the secondary midwife. She asked me if I had gone for it and I told her that it was that afternoon, but I wouldn't be going. She looked uncomfortable and pulled out a manilla file. She opened it and held it out to me.

"Perhaps you should look at what it says", she hedged.

I took a look. Out jumped a terrifying word:

Abnormality.

Fruits of my utter madness

2006-03-09T17:20:00.000-05:00

Well, I guess pulling my hair out at Walmart was worth it...

Happy New year, blah, blah, blah

2006-01-02T12:35:00.000-05:00

I'm just so wiped, I can't get into the new year's spirit. House is a wreck, tree needs to come down, deadlines looming. Sick kids, sick hubby. Ooo, dog's not sick, there's a bonus.

Why do we do this to ourselves?

But onto the ongoing topic; my boy. I've been hooked up with two other sets of parents of PRS kids in the last month. Very cool.

I really love talking with other parents. I've learned so much through my son and I wish I could spare all the other PRS parents out there some of the harder lessons. Not that we're over it all or did it all right, but I know I've also learned SO much from talking with other parents. And then there's just the support aspect. Parenting is hard enough without the added stresses of special needs. Knowing that there are others going through the same things has been really helpful to me. Just to be able to get answers to the, 'Is this normal?' question is a relief.

I guess that's just the way I'm wired--an extrovert. I gain energy and strength from interaction with people. Even more so when I'm going through something stressful. But I know there's others out there that would rather just keep to themselves. And then there's the chance that opening yourself up to others might bring on the suspicions about why your child is the way he is. (Was it something you did? Not enough vitamins during the pregnancy?) I was even thinking that just today as I watched my daughter sitting in on Jairus' speech therapy. She was answering all the questions right and I thought "See, it can't be anything I'm doing wrong, because she's ok". You'd think after nearly five years I would be over this issue.

So my point here for other parents is...connect! I think most parents are good with this, but others need to come out of themselves in order to find the answers for their kids. It might be embarassing to admit that your 5 years old isn't toilet trained yet, or really doesn't speak yet, but when you do, you just might discover that quite a few others are in the very same boat.

Happy New year! (It's actually March 9th, but I started this post in January!)

The Future looks clear--Possibly

2005-12-15T11:14:00.000-05:00

Since I've mentioned my other children a few times, I thought I should be clear about it. Jairus was my first, but we've now had two more babies. Two beautiful little girls.

As anyone who's had a child with a health issue can attest to, it can be a scary thought to consider having more. What if it happened again?

This too was a long, uncertain process. It took about 6 months of consideration before I was at peace with the idea of having a second child. Good thing too, because that's when I got pregnant again (!)

Not only did I (we) have to decide if we could handle a second child (always a daunting thought), we had to decide if we could go through it all again, should our second baby also have PRS. We had been told by genetics that the chances were no more than any other family, but that was before I started making connections between my mom's arthrogryposis and PRS. Since then genetics hasn't been too clear. They're not sure if this PRS is somehow running in the family (as my mom does have a cousin with PRS as well) . So it did seem a real possibility that future children could have it too. Jairus was about 20 months old when I discovered that Honour was on the way.

You might have noticed by now that I like unusual names. Not too unusual, and not made up. I like them to have meaning and preferably something...for lack of a better word, religious.

Jairus comes from the Bible. The New Testament to be more precise. People are often more familiar with the OT names--Joshua, Elijah, Noah. 'Course there are many common NT names too,--Matthew, Timothy, John. But I've yet to find Jairus in any baby book; even the Bible baby name book at the local christian book store. The reader's digest version I tell people is that Jairus' daughter died and Jesus came and healed her, bringing her back to life because of Jairus' faith. A noble namesake, I believe.
Honour is now 2.5 and one of the greatest blessings in my life. After ultrasound (extremely cool 3-D ultrasound--one of the few perks of having a previous baby with problems) cleared up any question of Jairus' birth defect repeating, I was able to birth her at home like I had hoped to for Jairus. She has been and is completely healthy with no signs of PRS.
I found her name in my family tree, quite a few generations back. It doesn't have the same kind of Bible story behind it as Jairus' name, but I think the name 'Honour' is sort of self explanatory.

So then came our 'holy cow we're pregnant again' baby. (Also known as the 'are we nuts to have three kids' baby). Really, it shouldn't freak me out that much--I have eight younger brothers and sisters. However, I'm not responsible for them 24/7.

With this pregnancy came the conundrum of where to find another beautiful and unique name and less concern about PRS. We were 1 for 1 now and I wasn't nearly as worried. I had wanted to name another daughter Alisha, but as much as I liked it, it was a more common name than Jairus and Honour, and I didn't want my third baby to have the only 'plain' name.

It was my brother, the doctoral student and family wordsmith that suggested Verity, meaning Truth. I rejected it at first because it sounded too much like Charity. I don't have a huge problem with Charity, except that a tape I used to listen to as a kid had a character named Charity Churchmouse (I'll never get that mouse voice out of my head!). As I searched for a name, I would often look up Honour and Jairus in the books I checked. I discovered that Honour actually comes from Puritan roots. Those pilgrims liked to name their kids after virtues (how about a son named "Livewell"?) . To my surprise, when I would check the name Verity, I'd find that it had the very same genesis. Over the pregnancy, I warmed to it and by the time Verity was born, I was taken with it. Again, the Lord blessed us with another big healthy girl, born at home with the whole family around. (Well, not around when she actually came out--only hubby, midwives, mom and two sisters).

So again, I offer this for any family wondering about their future after a child with health issues. Perhaps you're thinking you could never go through it again. Maybe you can't. But you know what?

I doubt it.

The Autism Question

2005-12-14T13:43:00.000-05:00

First I have to say that taking three kids under the age of four to Walmart to get their photos taken is COMPLETE AND UTTER MADNESS.

Never again.
Or not for a really freakin' long time.

On to the topic at hand. I know that there will be parents out there interested in this because, sadly, autism seems to be cropping up far more than we are all comfortable with. There's apparently a boom of autistic kids in the Silicon valley right now and specialists from all over are flocking to CA to study this and figure it out. Seems there's a connection between introverts marrying and having kids---and autism.

So glad I'm not an introvert.

And yet still, the suspicion about Jairus being autistic arose. It started when he was willy widdow and would line stuff up. He didn't play with cars and trucks: he would put them in traffic jams. Nice, long, perfectly straight traffic jams.
Over the years, a few people familiar with autism would ask us if he was and we would always say no. His pediatrician insisted he was not. Still, he showed characteristics very much like autism.
Back in the spring, I was emailing extensively with a mum from NJ. Her son has autism. She sent me a list of about 40 questions pertaining to autism that I was to consider in light of Jairus and answer honestly--if I could. Of those 40 questions, my answers indicated that at least 10 of them pointed Jairus towards autism. Some of those questions/answers talked about:
~lack of imaginative play
~lining up toys
~poor eye contact
~lack of response when called
~lack of imitation
~insistence on keeping everything the same
~inability to engage other children in play-poor social interaction
~hyper or hypo-sensitivity to pain
~reflux as an infant
~apraxia (non-verbal)

So I spoke to his therapists. They agreed that looking into this was prudent. There was another pediatrician in town who did testing for autism and so we went off to see him. He had me fill in a document called CARS:Childhood autism rating scale. A score of 30 or higher would indicate autism. Jairus scored about 28.

Unfortunately, even with a scale, diagnosing autism isn't so cut and dried. While he doesn't talk--a BIG marker for autism, he's always been very social--smiling and hamming it up since he was a wee babe. His lack of normal social interaction now is very likely due to the fact that he can't talk and 4-5 year old kids now notice that and keep their distance. He also does not 'stim' --engage in repetitive behaviors to stimulate himself, like spinning things or dropping toys on purpose just to watch them fall, over and over. But he doesn't play with toys properly or he plays with weird things--like the movie cases. He insists on having stacks of movies around him when he's watching a movie. Usually he has to have the case of the one currently playing securely in his grasp. Sometimes he'll line them up like his own personal yellow brick road.

So no real decision has been made. His pediatrician wanted to wait on it a few months and revisit. We saw him again just a couple weeks ago, and it does seem that he's investigating in other directions. That's good, I suppose. But something is up with Jairus. We may never know exactly, but for now, we keep on looking.

Anti-Establishment

2005-12-09T15:02:00.000-05:00

I guess it started when I was living in Chicago. I met this woman who was (I'll assume she still is) a midwife. A lay-midwife, that is. Like an apprentice, not formally educated and approved of by the medical powers that be. It was illegal for her to practice in Illinois, so she lived in Indiana.She opened my mind to the possibility that 'the doctors don't know everything'.

Be still my heart.

Jairus' birth waylaid the progress of such ideas in my head, but I'm slowly coming back. Maybe it was when all the DNA testing came back normal. (How can all his insides be normal, but not his outsides?)
Or when I was the one to point out to the geneticist that Jairus and my mother shared characteristics. (She has arthrogryposis).
If I listed all the things that have pointed me towards natural health, we'd be here a while. Let me just tell you about the 'other things' we've been trying.

We took Jairus to an herbalist who analyzed his blood. Lotsa crap in there. I wasn't surprised, the kid's been living on pudding cups and Heinz toddler meals for 2.5 years. The herbalist also want us to look into cranial sacral therapy.
Chiropractor: He's had one visit. I'd like to go back, when we find the money...
Mannatech: My inlaws joined up with this Texas based health supplement company. I wasn't convinced to start Jairus on them until...
The Psychologist: specializing in learning delays and such, recommended glyconutrients. That's the Mannatec stuff. Even though everyone told us PRS wouldn't affect his...brain...he's quite behind. At least a year at last assessment. So this past spring at a home schooling convention in Hamilton, we met a psychologist who during her question and answer period, described some of the exact issues Jairus deals with. We've had two sessions with her and she's prescribed a sensory repatterning therapy...I think I'll do a whole post on that later.
HBOT-Hyperbaric Oxygen Therapy. We've not done it, just looked into it. Turns out there's a private clinic in east Hamilton that does it. I figured, if there's a chance some of his delays are caused by his poor oxygen supply at birth (and ensuing weeks), perhaps this therapy could repair the damage. It's still a possibility...
Overall nutritional improvement: I now buy reverse-osmosis water at the local healthfood store. I'd like to get our own system, but of course, that's pricey. I started buying all our produce at the local farmers market. I'd love to go organic, but this is the best I can do. I'd also love to buy organic meat--there's a place in Ancaster that looks good, but again, cost is a factor. I now buy whole grain and grind it in my Vitamix (a recent ebay purchase) and make my bread with it in the breadmaker. (Yeah, no way I'm doing that by hand). A little more trouble, but a book from a nutritionist friend about healing naturally through vitamins and such really made an impact on how I view our food.

And this is just out of sheer frustration. All the developmental pediatricians, speech and occupational therapists, ENT's, endochrinologists, geneticists and scads of other specialists couldn't tell me why Jairus won't eat. Or why he won't speak. Why he moves like Jack from Return to OZ. So I took matters into my own hands. There was a certain level of freedom there--and greater responsibility. I kept wondering if there was some key bit of knowledge I was missing and somehow that would jeopardize his life. Or at least his quality of life.

And it was also a little overwhelming. How to make all these changes in our diet? One thing at a time. I know I should be checking with God a little more often, but at least, I try to keep my ear open for any still, small warning. Doors open, I go through. I know He's got the master plan.

I'm so glad no one says retarded anymore

2005-12-08T15:13:00.000-05:00

Because I'm afraid that's what my son would get called. No, now they say 'developmentally delayed'. I suppose that doesn't feel like a kick in the gut.

But I thought of this yesterday--how when I was a kid, the word used was retarded. I went to pick up Jairus from preschool and the cutest little girl kept saying 'bye' to him. Of course, Jairus didn't say anything back, didn't even really register any acknowledgement that anyone was speaking to him. Finally I asked the teacher what the little girls name was. I think it was Abby or something.

I said, "Jairus, Abby is saying bye to you".

He looked at Abby and went over and gave her a hug. Slightly embarrassed, I said, "Oh, look, he's saying good-bye too". The teacher said something about how nice that was. I don't think Abby concurred.
Then he spotted another little girl behind Abby and started towards her too. Now, you have to imagine this. My little boy tends to drool a little, has Harry Potter glasses that are always smudged, and wipes his nose all over his clothes. Not such a pretty picture. I think this other little girl concurred.

Oh, the look on her face. The teacher quickly said, 'Oh, Jairus, I don't think everyone wants a hug'. I pulled him away.

As we left, another little girl was leaving. Many kids were yelling out goodbyes as her and her mom walked out the door.

She waved.

Jairus at 4.5 years old

2005-12-08T14:57:00.002-05:00

That's my boy's name. Jairus Donovan. I love it. I've only heard of one other Jairus in the world--Jairus David in the US... um...Navy? Army? Air Force? Saw him in a magazine.

He's 4 and a half in this picture, with little sister Honour. People who I see once in a while will say, "And how's he doin?". I'm never quite sure how to answer. He can breathe now. That's good, right? He can eat now. That sounds good, but not when you delve. He'll be five in March and he weighs 30 pounds. Do you have any idea how stressful that is to a mom? He looks like...the animated Robin hood when he was competing in the archery contest. Many meals, he just refuses to eat. I guess 3 and a 1/2 years of eating through a tube will do that to you. It was so exciting to take his g-tube out a little over a year ago. Now somedays I wish we still had it, just to get some meat on his skinny little bones.

His cleft was repaired in one operation when he was 10 months old. They also put the g-tube in, took off the little ear tag (it was the cutest little teardrop shaped growth in front of his right ear. Still, I'm glad it's gone) and put ear tubes in. As usual with cleft kids, he had fluid built up behind his eardrum and so his hearing was impaired.

He doesn't talk. No, I don't know why. He makes noises, yes. Sometimes they even sound a little like certain words. But overall, he doesn't, or can't speak. He does some sign language, so I know there's some understanding there. This is probably the most heartwrenching of all his issues now.
Oh for the day when my little boy will say 'I love you, mom'. Sometimes I despair that it will ever happen.

PRS 101

2005-12-08T14:09:00.001-05:00

It's time now to explain a little more about what exactly was wrong with Jairus.

Pierre Robin Sequence is a little known genetic birth defect that caused a few problems for Jairus: his jaw didn't grow in utero (micrognathia), he had a cleft soft palate and a few other anomalies. I'll list them because you never know when someone else's baby might have been born the same way and then we might discover more about our wee boy.
~huge soft spot
~hypospadius (I'm not getting into that--if you know, then you know)
~sacral dimple (Thank God no spina bifida)
~ear tag (Again, Thank God no inner ear deformities)
~contractions of the hands (no way would they open up...)
~ulnar deviation (Oh the medical terms we learn...his fingers slant outwards)
~low set ears

Overall, he had what I've heard referred to as 'midline' issues. When the two halves of his little body were coming together during those early weeks of gestation, they...had difficulties, I guess.

When the doctors first told us what he had wrong, it didn't seem all that urgent. So he'd have a small chin. I had no idea what was coming...

"He'll have problems breathing" is vague doctor language for his tongue couldn't fit into his mouth because of the small jaw. This is what caused the cleft and then after birth his tongue was forced back into his throat, cutting off his airway. A tracheostomy was a possibility, but thank God that didn't have to happen. Sick Kids in Toronto sent a breathing tube that went down his nose, to the back of his throat and kept his airway 'patent'. However, when I was expecting him to need a little oxygen at birth to kick-start his life, breathing tubes for the next four months of his life were entirely unexpected.

"He might not be able to nurse" is also doctor code for he couldn't even suck on a bottle. Don't get me wrong, the doctors (McMaster University Hospital in Hamilton, Ontario) were amazing. They just couldn't say for sure how little boy would do until after he was born. The small jaw they saw on ultrasound could have been anything from PRS to Trisomy 13--a fatal birth defect.
But back to feeding--he couldn't. IV for a few days, and then a nasal-gastric tube. Ever the hopeful new mom, I pumped milk and he was tube fed. At 6 weeks they tried a special bottle and while he sucked, he couldn't get nearly enough to keep himself alive. 10 months of an ng-tube and months of reflux later...we had them put in a g-tube (right through the wall of his stomach). Any mom dealing with anything like this LISTEN UP: Don't wait. The g-tube is way easy and would have prevented years of feeding issues I believe. DO IT NOW.

5 weeks in the NICU. 2 months total in hospital--and that was 4 months less than what Sick Kids said it would be. We came home to our tiny Stoney Creek house with baby in my arms...and every conceivable piece of equipment in daddy's arms. Feeding pump, suction pump, breast pump...

Can I just stop here and say how awesome Canada's medical system is? It's been a rare thing over the past 4 and a half years to have been in need for anything our son required. I am completely grateful. Grateful to the cardiac specialist who came to my tiny boy at 10 o'clock at night (all was well). Grateful to my mom who was there every day with me and her firstborn grandson. Grateful that through all this, I learned what it meant to rely on God's strength. I was not strong enough put tubes down my baby's nose, or suction out his airway or watch him struggle to breath. Only He who is in me could do that.

Take a deep breath and start at the beginning...

2005-12-08T12:37:00.000-05:00

Well Hello now,

This is quite a daunting task--my first post, on my first blog. Let me outline a few things.

I do this for my son. So that I might be educated to be a better parent to him. And so for the new mom who is googling the topic that is now tearing at her heart, let me insert some key words:

PRS, Pierre Robin Sequence, Pierre Robin Syndrome, G-tubes, nasal pharyngeal tubes, NPT's, breathing difficulties, cleft palate, micrognathia, learning delays, developmental delays, non-verbal, apraxia, autism, reflux, mic-key button, neo-natal intensive care...

My sweet baby boy.

More to come, my friends.

PRSmama