CHAPTER 3 : The First 16 Days

Life at home with a newborn was pretty much what I expected - exhausting. During the first two weeks at home I did nothing except take care of Josh's every need. He was feeding every two hours around the clock and was doing everything you'd expect a newborn to do.

His face was still yellow from the jaundice and seeing him everyday made it difficult to determine if the jaundice was getting worse. His first appointment with his pediatrician wasn't until Friday August 31 and I was a little nervous waiting that long to find out if his jaundice needed treatment. I figured a fresh pair of experienced eyes wasn't a bad idea so I had a public health nurse come in on the Thursday to check him out. She felt that the jaundice didn't look that bad and that there was no need to take him in to the hospital to get his bilirubin level checked. The nurse had also brought along a scale so we were able to weigh him for the first time since being discharged from the hospital. At the time of discharge Josh weighed 6 lbs 13 oz and now three days later he was just under 7 1/2 lbs. That was really comforting to know - it meant that he was breastfeeding well and that he was getting enough to eat. I think that's something that all breastfeeding mothers struggle with in the beginning - the concern that their baby isn't eating enough.

The following afternoon, when Josh was 6 days old, we took him to see his pediatrician. The check up went well. He was 7 1/2 lbs and everything looked good. Our pediatrician told us not to worry about the jaundice. It wasn't a severe case and the yellow hue should disappear within the next few weeks. There was no reason to suspect that there was anything wrong. Actually, when the pediatrician finished his assessment, he turned to Robb and I and said that Josh was a "very healthy boy". And so we went home taking solace in the fact that we had been doing everything right and that our boy was doing well.

And so it went for the next 10 days.

On Monday September 10, when Josh was 16 days old, everything changed. The day started out like any other but around 0730 Josh started to make a funny noise - a grunty noise I guess is the best way to describe it. I remember learning some time ago that when an infant grunts it often indicates difficulty breathing, however Josh seemed to be breathing fine and was still alert and interacting appropriately with me and his environment. I decided not to worry too much about it but would keep a close eye for any other changes. Around 0830 I noticed that Josh's face was cool to the touch. I took his temperature (under his armpit so I wouldn't have to undress him) and it was low. I bundled him up in a bunch of blankets and re-took his temp 15 minutes later. There was no change. By this point Josh was becoming more and more drowsy and was beginning to not look well. I quickly dialed his pediatrician's office to find out what I should do. No answer, just an answering machine - nuts. I began to leave a message but as I was listening to myself describe Josh's symptoms I realized that his condition was worse than I was willing to acknowledge. Just as I was hanging up the phone Robb called from work to see how Josh was doing. I told him that he wasn't doing well and that we should take him over to CHEO (Children's Hospital of Eastern Ontario). Robb rushed home from work and we immediately took him over to CHEO. Thankfully the hospital is right in our neighbourhood and was only a short drive away.

I don't remember exactly what time we got to the hospital - sometime shortly after 0900 I guess. There was a line up of 3 or 4 people at the emergency triage desk and I took my place behind them. I truly didn't believe that we had a life threatening situation on my hands. I knew Josh wasn't well, but I certainly didn't realize that he was slowly dying as I held him in his car seat. And so I waited patiently. Robb had since joined us in emerge after parking the car. He was not so patient. He was incredibly frustrated with having to wait through the initial assessments of the 6 year old who closed her hand in the door 5 days ago, and the 17 year old who got hit in the head with a basketball and had a headache, while our little guy was left waiting. He kept his cool though and continued to wait for our turn which is a true testament to how unaware we were of the gravity of the situation. Robb would be the first to speak up if he felt his son's life was at risk.

After about 15 minutes it was finally our turn. I recounted the morning's events for the triage nurse and provided information regarding his birth and how the last two weeks at home had gone. She took a look at Josh sitting in his car seat and she initially thought that his problem was jaundice related. His face was still a bit yellow but I didn't feel that he was any more yellow than he was 10 days ago at his doctor's office. Could I have been wrong? Was his jaundice getting worse?

Due to his size, the nurse thought it would be best if we brought him in to the resus room to check his vitals and do an assessment. I followed her into the resus room and took Josh out of his car seat. I began to undress him as instructed in order to get an accurate weight. As I removed his clothes the seriousness of the situation was all to obvious. His little body was as white as could be. He had absolutely no colour - except his face, his face was yellow. The jaundice had hid the paleness caused by poor blood perfusion and for some reason his lips never turned blue. If only I had reacted sooner when he started making the grunty noise; if only I had done a rectal temp at home and discovered the paleness; if only I had unbundled him from the blankets and felt his limp body in my arms; if only...if only...if only... Sometimes the guilt of not noticing a problem sooner is overwhelming.

I placed Josh's limp body on the scale - he weighed just over 7 lbs. He had lost weight. I have no idea when he started losing weight. He had been breastfeeding every two hours often for 30 minutes or more. I thought I just had a really hungry baby. It turns out that he wasn't breastfeeding effectively and that's why he was feeding for so long at each session. I had no idea. Josh was my first baby, I didn't realize that it wasn't normal for them to breastfeed for so long.
As an interesting side note, I had planned on bringing Josh to a well baby drop in centre that same day he got sick. It was quite painful every time he latched on and I wanted to be sure that I was doing it correctly. They weigh the babies at this drop in centre so if his heart had hung in there one more day his weight loss would have been identified and then likely investigated.
As soon as I had undressed Josh and the lack of colour had been revealed, the triage nurse had rushed out to get immediate help for Josh. She returned just as I was placing Josh back on the examination table after getting his weight. Within a minute there was maybe 20 people surrounding Josh trying to get him stabilized while at the same time trying to figure out what was wrong. The ER doc's first suspicion was that Josh had contracted some sort of infection at birth and it was just now taking a hold. However, as soon as Josh was intubated and placed on 100% oxygen the doctor had a new suspicion: that Josh had a heart problem. He said that Josh's O2 sats were low and that they had put him on 100% oxygen but his sats were not coming up, suggesting that he had a heart defect - specifically TGA. It was then that I first looked at the monitor Josh was hooked up to. His O2 sats were only in the 30 - 40 % range. I was in shock. I couldn't believe what was going on. I remember sitting in the middle of the room watching everyone scurry around Josh, working hard to stabilize him and feeling completely helpless. I remember looking over at Josh's empty car seat resting in the corner and realizing that we had to take it home without Josh in it. On the outside I stayed calm and collected - I wanted to be strong for Josh, but on the inside I was devastated. A million things were racing through my mind and I found it difficult to focus on a single train of thought.

Josh was started on prostaglandins to reopen the ductus arteriosis and a stat echocardiogram was ordered which did of course confirm the diagnosis. Around 1030, once Josh was somewhat stabilized, he was transferred up to the pediatric ICU where they performed an atrial septostomy. This is a procedure usually performed in the cath lab, but the lab was unavailable and Josh needed the procedure as soon as possible.

Robb and I were led to the PICU parent room where we were able to wait until they were done the procedure and things were settled enough for us to be reunited with Josh. It was a longer wait than I had anticipated - we weren't able to go and see him until around 1500. Doctors had been in to see us during that time; the first being one of the cardiologists Dr. Gow (who incidently is now Josh's cardiologist for follow-ups). We were given more detail on the nature of Josh's heart defect and the purpose of the atrial septostomy. It was a lot of information to digest in a short period of time especially considering that we were still in a state of shock. But at least we had a somewhat clearer picture of what was going on and what would likely happen in the days to come.

Sometime later (I think it was in the afternoon) one of the PICU doctors (Dr. Foster) came in to talk to us about how Josh was doing and what they had done so far. I honestly don't remember what all she told us but I remember she was trying to give us an idea of Josh's state and I suppose to prepare us for what we would see when reunited with him. The one thing that I do remember from that conversation was regarding Josh's blood pH level. First of all I should explain that under normal circumstances our cells use oxygen to create energy to perform vital processes. When there isn't enough oxygen the cells are forced to create energy anaerobically (without oxygen) which creates acid as a by-product. If the lack of oxygen (hypoxia) persists the acid begins to accumulate in the blood causing metabolic acidosis.

Josh endured an extended period of hypoxia which did ultimately lead to metabolic acidosis. Dr. Foster informed us that normal blood pH is 7.4. When Josh was first brought into the ER his blood pH was 6.6. I didn't really grasp the significance of this number until Dr. Foster told us that this was the lowest blood pH she had ever seen in a baby that was still alive. This really put into perspective how sick Josh really was. I've since learned that Josh's blood was 8 times more acidic than normal.

Metabolic acidosis can cause a whole cascade of problems but specifically it affects circulation and coagulation. It causes sluggish circulation and it makes the blood more likely to clot - a bad combination. After the atrial septostomy was performed a central line was inserted in Josh's right femoral vein - in the same hole used by the catheter to create the ASD. Unfortunately because of the effects of the acidosis a large clot formed around the central line making it unusable.

After what seemed like an eternity we were able to go see Josh. It was extremely difficult to see him in that state. He was in a drug-induced coma, was on a ventilator (a machine was breathing for him) and he had so many lines and wires attached to him. It was hard to believe that this was the same boy who less than 24 hours ago seemed healthy and vibrant and had been flashing smiles at me. The sadness was overwhelming. Robb, who I should mention hates hospitals, came into the ICU to see Josh but found the situation to much to bear. He gave Josh a kiss on the head but had to leave shortly after.

I was able to spend a few minutes with Josh before being ushered off by one of the nurses to go and pump my breast milk. I was a little put of by this initially - understandably I wanted to spend time with Josh - but I am grateful for her firm and steady statements as they started the process that ultimately allowed me to retain my breast milk. Given my state of mind at the time I am almost certain that the idea of pumping my breast milk would not have even occurred to me until it was too late.

After pumping some breast milk and spending some more time with Josh, I reluctantly left the ICU to rejoin Robb and head home to grab a bite to eat. Neither of us had eaten all day. Truthfully we weren't even hungry - the stress and the emotion of the day weighed heavy on our bodies - but we knew we had to eat something. After having a light meal and making a few difficult phone calls to family we headed back to the hospital. Robb couldn't handle going back in the ICU so I went in alone and spent another 4 or 5 hours with him. He was pretty unstable - his blood pressure kept dropping and his heart rate was sky high, but I knew he was a fighter and he would pull through.

It was really hard to leave him that night but I knew I needed to get some sleep; I knew I needed my energy for the days ahead. Somehow I did manage to get about 4 hours sleep, but when the hospital called around 0400 asking for my consent to give Josh a blood transfusion - that was the end of sleep for me. I tried to sleep through the tears but the emotional burden was too much to overcome.