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November 9, 2002
Friday was Victor’s annual cardiology appointment. After much fanfare and protest, they actually managed to do an ECG and ultrasound on poor ol’ Vic and out he came once again with a clean bill of health.
Needless to say, those appointments always bring back some wicked memories…
Flashback to May 1999...
- Ring! Ring!
- Allo?
- Is this Ms. D? (It’s not, it’s Ms. M. because here in Quebec we keep our maiden name but why fuss.)
- Yes?
- Hi! This is Dr. C’s office; we’re calling to tell you that we’ve got a spot for Victor next week. We strongly recommend that you acquiesce.
- But we already have him scheduled for July, don’t we?
- Yes, but we tend to keep July for schoolchildren and if he’s not considered an emergency in July he could be bumped and rescheduled for August or September.
Here I was, phone in hand and baby in the other with a grand total of an instant to decide whether or not I wanted to forgo another two months with my little one so he could go under the knife in a week. When the surgeon had explained to us what the surgery entailed, he had put a lot of emphasis on the success rate of well over 97%. I had bluntly told him that my chance of having a child with DS were 1/1,500 so by this measure, he was 43 times more likely of dying from this surgery than having DS. That had caught him off guard. What else could he say? I could tell he was looking for more comforting words but just couldn’t find any. This is what happens when something like this happens to you; statistics take on a life of their own.
I knew Victor had stopped thriving. He was falling asleep at the bottle, his reflux was getting worse by the day and, at 8 ½ lbs, was already doing his nights. It was clear that he had reached the maximum size his heart could support. I also sensed that if he was bumped in July he would become an emergency case in August or September. Due to his heart defect, his lungs were working in overdrive and suffering from hypertension. As long as his surgery was done within 6 months of his first breath, the condition was reversible, if not it would become chronic. He was born on February 5th so August would put him at 7 months and September 8 months. That would be playing with fire. In that split second of pondering, I quickly determined that, for Victor’s sake, I didn’t have much choice.
- Sure, we’ll take the spot.
So there it was, set for May 27th. On that set date, we took him in for the prep work. They had to do blood work and a series of tests: ECG, ultrasound, etc. There and then I found out yet another difference between him and us. We have large veins, he has small blood vessels. They could not find a vein that was big enough, hence had to express all the blood they needed from a little prick in the big toe. It just seemed to be vial after vial, non-stop. That night, it broke my heart to leave him there all alone with strangers but I knew that it would be better for us to get a good night’s sleep. Victor slept through the night anyway so he wouldn’t notice our absence. The next day was going to be nerve wrecking and we knew. The odd thing is that I never felt so peaceful in my entire life. Today, as I look back I think I was totally numb. It was probably my survival instinct kicking in.
We went in early the very next morning. We knew that this could be our last few hours with our precious little one and wanted to hold him as much as possible. The most heart wrenching moment came when they called out his name in the waiting room. That was it. We had to rest him on a gurney and there he was, all smiles and peaceful, not one worry in the world. What were we doing?!?
We were shown to a small solemn room. We sat there, restless, for a grand total of 5 minutes until Eric looked at me and asked me if I wanted to go out and see a movie. I couldn’t just sit there twirling my thumbs for the next 4 hours or more so I agreed. We went to see Star Wars. I was in a daze and the proof is that I had to ask Eric which movie we went to see to write this piece. By the time we got back to the hospital, they should have been close to finishing but that was not the case. We ended up waiting a while longer and our level of anxiety was growing by the minute.
Finally the surgeon called us into his office. We held our breath. He told us that the surgery was a success. It had taken longer than anticipated because the defect was much more complex than first assessed. He added that it was successful only because they approached it the same way they would have, had they known the true nature of the defect. Despite all the technology, they never really know what they are going to encounter. This has to be rocket science. He was a mere 8 ½ lbs, his heart must have not been much bigger than that of a turkey’s and they managed to patch the holes! Man was I happy the assessment was wrong! Ignorance can be bliss.
We were shown to the ICU and I finally caught a glimpse of my little tid bit. What a sight! He was so minuscule in what seemed like giant’s bed. His arms and legs we strapped down and there were monitors and cables attached to every part of his body. His face was swollen beyond recognition. All we could do was wait, wait and wait some more. What were we waiting for exactly? First, we had to wait for his kidneys to start working again. For hours, we fixated on the catheter waiting to see a trickle of urine. Once that happened, he had to go through the normal healing process and then extubation. As long as the child is on the respirator (intubated), he is in danger. We asked all kinds of questions but quickly found out that they were very stingy with the answers that revolved around the “next step”. All we were told is that it can take anywhere from 2-7 days to come off the respirator. While I was hoping for the 2 day stint, Victor had something else in store for me.
Right after surgery, the body is in shock so the pressure drops and drops and drops. To maintain the blood pressure at an adequate level, they inject a liquid in the blood stream. This goes on for hours! The kidneys only work with good blood pressure and if the pressure drops too much for too long they fail. In the process, the babies get completed bloated from this liquid leaking out of the vessels into the surrounding tissues. To our relief, the urine came quickly.
After such surgery, most babies don’t move until they’re feeling much better. Not Victor. To our chagrin, we found out that his threshold for pain is probably quite high; as soon as he came to he tried to wiggle out of his restraints and to pull off all his IVs. They had to sedate him. That is not a good thing because, as long as he is sedated, they can’t take him off the respirator. With each passing day it was more of the same. By day 5, I was growing impatient and asked them why they weren’t trying to extubate him. They told me that he was ready to be extubated but since he had had the tube in so long, they would now have to give him a few doses of steroids before pulling it out. Without the latter, his larynx would close up and he’d suffocate. Great… that meant another day! I just wanted to get him out of danger. On day 6, the girl right next to him passed away as I stood next to a mother on the verge of freaking out. THAT was twilight zone. I knew just how close I was to living her worst nightmare. I WANTED that tube OUT NOW!!! They assured me that the tube would be coming out that very night. I left in good spirits, I was pretty well convinced that I would get to see an extubated Victor when I walked in the next morning.
Imagine my surprise, my anger and my frustration when I walked into the ICU the very next morning only to find the tube still in. I stood there, in a trance, speechless, for a good 60 seconds. All eyes were on me. To this day, I still don’t know if my expectations were simply too high of if they were taking their own sweet time so I couldn’t tell whether they were feeling sorry for me or feeling guilty. I just felt like screaming my lungs out but I said nothing and everyone there was just plain uncomfortable. I turned around and walked out. I walked along Ste-Catherine’s Blvd. from the Children’s to I don’t know where. All I know is that I walked non-stop for well over 4 hours. I was so frustrated and furious that I needed to calm down. I walked back into the ICU around lunchtime and everyone had apparently been looking for me. Victor had been extubated and they knew it would make my day. It did indeed. I quickly sat down next to my son. Despite all the wires and monitors I finally held him close to me. My heart skipped a beat. Something was strange. His tongue was sticking out and his eyes wouldn’t focus. He seemed excited or distraught. I made a sign for the doctor to come over and told him that this was not Victor. His tongue never hung out like that. The doctor told me that this was normal with DS. I repeated firmly and slowly that his tongue did not stick out like that. By my tone, the doctor understood I meant business so he swiftly went to get a questionnaire. After having me answer 4 or 5 questions out of I don’t know how many, he was convinced enough to turn around and blurt out to his team: “DETOX!” With all the sedation, Victor had become dependant on opiates.
Soon after detox, they started him on his milk. One ounce per feed, gavaged. After a few feeds, they ex-rayed his chest area. That’s when we found out he wouldn’t coming out any time soon. Once again, I was livid and discouraged. I couldn’t believe they had not warned us. It turns out that during surgery, they had severed a small vessel from the lymphatic system. Apparently, this happens frequently; the babies are so small that you can't avoid everything when you're cutting. Now, with every feed, the lipids that were going trough this vessel were filling his chest cavity. All we could do was wait for this vessel to close up. This meant that they had to feed him a special formula that would be digested differently; no lipids would be going through this broken vessel. They would not tell us how long it would take to heal. I realized why when I looked it up on the internet. All the cases we could find took months to heal. They did tell us that if Victor took well to the special formula, they would let us take him home. Victor being Victor took very well to this disgusting formula. I could have sworn it was a concoction of vinegar chips dipped in water passed through the blender. A few days later, they fed him milk again, ex-rayed and, to everyone’s surprise, found no trace of leakage!
In mid-June, when we finally walked out of the hospital with Victor in our arms, we were in the middle of a heat wave and I noticed the sun for the first time. After all this, summer of ’99 ended up being one of the best summers of my life.
Danielle
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