ECHO was good

   G had his first sedation appointment at the clinic today. He had to fast beforehand, so he missed his usual 6:30 am nurse and the hours of sleep that come afterward. He was tired, hungry, and very grumpy by the time we got to the clinic.

   The sedation itself was actually pretty funny. Little G was laughing and happy, and clearly a little high. This is the only time I will be happy to see my kid on mind altering drugs. His medical anxiety is very real, and as the ECHO technician said today, this isn't his last rodeo. The sedation is essential to get the difficult pictures they need this time, and saves us the memory of a bad experience for next time.

    He is now peacefully snoozing the last of the drug off, and I am finally getting a bite to eat and a cup of coffee after being awake for 6 hours.

   The ECHO looked good. He is right where we expect him to be. That pulmonary valve is still very leaky, but the "doorway" and arteries downstream are wide. This means that the right side of his heart has to work hard to compensate for the back flow, but it doesn't have to work hard to squeeze blood through teeny tiny arteries. If there was significant narrowing of the arteries (which could happen over time), the overload on his heart would be too much, and we would need to do something about it. As it stands now, his heart should last until his teens or early adult years, at which point he will need a valve replacement. Anything could happen between now and then to change the plan, but we are happy to keep on living life as normal in the meantime.

    His regular weight checks can stop for now as well. We will continue to see his pediatrician every few months, especially to check in on his overall development and see about getting in to see the geneticist. We have been given the go ahead to travel if we wish, taking "normal toddler precautions." He is not to have activity restrictions at this time. TOF can lead to arrhythmias, so he may have restrictions later on. I asked if we just get to live as "normal parents," and the cardiologist said, "Yes. Exactly. "

   It's quite strange to think of myself as a "normal" mom. About a year ago, I became a "heart mom," and even though times are peaceful, I think I will continue to wear that badge. Some people have told me that I am not a heart mom, but instead the mother of a child with heart disease. None of these well meaning folks had chronically ill children. All of my heart mom friends also identify as heart moms. We have earned the name with all of the work we put in, medical terminology we learn, and nights we spent listening to the beeps of our children's monitors. Perhaps I will just save the label and use it with my other heart mom friends. They will understand.

Regardless of how I identify, it looks like the next six to nine months will be filled with life outside of the hospital. Beaches. Parks. The yard. And best of all, home. Bring it on!

Seven months of peace

It's been a while. I don't know if anyone checks this blog anymore, but I thought an update was due anyway.

We had a wonderful winter and spring. The baby grew as expected, and is now the busiest little boy I have ever met. He doesn't seem to have a fifth gear, but he spends almost all of his time in fourth. He spends most of his time exploring outdoors. Summer hiking season is coming,  and G is ready.

Today marks two months outside of all medical settings. This is huge. We had been averaging four or five appointments and ER trips per month over the winter, including monthly shots to boost immunity against the nasty cold, RSV. The time away from doctors and nurses has been wonderful for G. His anxiety has decreased. He is happy to be babysat by his grandparents, whereas he wouldn't even let them hold him in the past. He waves at the neighbours and plays with other children. We will see how he does in a few days, after his next ECHO and immunizations.

I am healing emotionally as well. I feel much more at peace with our lives now. It's easy to do, because this is a peaceful time. G has no scheduled procedures, he is growing and developing well, and he isn't currently on medication. We are enjoying this period of normalcy, because we know that this won't last forever. Eventually, his heart won't be able to keep up and something will need to be done. While these easy moments last, we are cherishing them.

There are a few questions we hope to answer at the ECHO on Thursday. Are the small, underdeveloped pulmonary arteries catching up on their growth, or will an intervention be necessary? How is the heart coping with the leaky valves? Is the pulmonary valve narrowing again, or growing like we hoped? Can we go back to ignoring this heart defect for a few more months, or do we need to be ever vigilant?

G is doing well. My husband and I discuss and rationalize and agree that everything will look good on the ECHO. Yet we live with the real fear that we will be blindsided with bad news again. In 36 hours it will be done, but until then we wait with baited breath.

G doesn't know our fear, and for that I am thankful. His biggest issue tomorrow will probably be convincing me that we need to go back to the park for a fifth time and that he should be able to eat chicken soup for all of his meals and snacks.

I will try to update after our consult on Thursday. If I am slow to get around to it, we probably got good news. I usually write when my heart hurts, and play when times are good.

Healing hearts

Life, it would seem, is moving forward.

I haven't posted in about a month, mostly because there hasn't been much to report. Little G is a typical seven monther. He loves snuggles, doesn't trust solid foods, and gives grand speeches a few times a day. In those speeches, he sounds like a political leader rallying the support of an oppressed minority. I imagine him saying "We, the babies, deserve more playtime. Stand with me, friends, and we will banish naps forever!" His repertoire of sounds is growing, and his range of expression has exploded.

You can probably already tell that, compared with previous posts, this entry will be a little boring. The insult has passed and now we are simply recovering. The process doesn't make for interesting writing, but it has honestly been exhausting.

Little G is just beginning to trust new people. It is quite obvious that he does not feel secure with antone other than his parents. He cries in his sleep and awakens in terror. Sometimes it is difficult to tell where the scars of trauma end and where his own temperament begins. He has always been wary and very dependent on his parents, but his needs have definitely intensified since his surgery. When we took him to get his vaccines, he was quite content until we entered the nurses office. He immediately began shaking in my arms. I believe that, although he will not have clear memories of his hospital stay for long, it will leave indelible marks on his mind and soul.

My husband and I are also recovering. I have been reading blogs written by other heart families often. It makes our experience feel more real. I look forward to the day when I don't feel compelled to learn about these sick babies. It's emotionally exhausting.

I learned through Facebook that one little girl, who was a few beds down from us in the ICU, lost her battle on the same day we were discharged. I saw her sitting outside of surgical daycare as we came back from X ray on the day before G 's surgery. I could tell that she was a heart baby by the blue tinge to her face. I checked on her every time I passed her bed in the ICU and hoped that she would recover. I still think of her often, and of her family who I never met.

I always thought of G as relatively healthy, but he wasn't. He was in a room with the sickest kids in the province. Two months later, I am still not quite ready to accept this reality.

We made it to the cardiologist this week. G is OK, right where we expect him to be. His pulmonic valve is very leaky due to the aggressive patch that was used in his repair. We will wait and see what this means for his heart function and his energy levels as he gets older. He might need a procedure or two completed through a catheter in the next five years or so. The first would repair a small hole leftover from the surgery if it doesn't fill in on its own. The second would use an inflatable balloon to widen his pulmonary arteries, reducing the stress on his leaky valve.

We also learned that he will almost certainly need to have his leaky valve replaced eventually. Luckily, the time frame is not months or years, but decades. The cardiologist couldn't say how long until the valve needs replacement  - it's still far to early to know - but his best guess was about 20 years.

Pulmonic valves have typically been replaced via open heart surgery. However, we are just entering the age where they can be replaced through a catheter. Only certain patients qualify, but we probably have 20 years or so for the science to evolve. I am optimistic that this technique will be well established by the time G needs a replacement, and that he can avoid another open heart operation.

For now, we live and we heal. We took our first family vacation. It was only half an hour from home, but it was just what we needed. We spend three nights in a condo at the beach, and took G to the Italian restaurant where we were married. We celebrated Halloween. G wore a monkey costume hand made by my mom and inspired by one of the intensivists at Children's Hospital. She frequently called G a "chunky little monkey." And now we are looking forward to Christmas - our first as a family of three.

Our cardiologist told us to break out of the metaphorical bubble as G is now strong enough to handle colds. He suggested that we go out for coffee, shopping, and even go to the pool. Honestly, the pool and its germs are still a little scary for me. But G and I have been taking trips out in public, and he even plays with the community toys in the malls. And I don't even wipe them off first. Baby steps, right?

I will try to update this blog periodically, but it will likely be a monthly thing. Until next time...

Normal

Sorry for not posting sooner. We have been very busy enjoying life with an energetic six monther.

G has settled back into a normal routine. At first, he needed extra snuggles and attention to calm his frazzled nerves. Placing him on his back would result in a fit of hysterics. It seems that the poor kid was a little traumatized by his stay in the hospital. Recently, he is back to his old ways, but with a few improvements.

He laughs ALL the time. Everything is hilarious to this silly nut. Before his surgery, getting a giggle was hard work. Now, sometimes I can just smile at him and he will burst into laughter.

He gives a zillion kisses. He loved to give smooches out before, but has intensified his desire to plant sticky wet ones on unsuspecting victims... I mean lucky recipients.

He "blisses out." Now that breathing is not such hard work, he can actually relax. Watching him experience this sensation for the first time was strange and wonderful. He just lay in my arms, smiling up at me. He wasn't busy or especially interactive, but simply content.

We now have appointments with the nurse clinician every few weeks, and the GP as needed. The pediatrician popped in for a visit at our last appointment, too. We feel like VIP up in Peds. We saw the cardiologist a couple of weeks ago, and will see him again at the beginning of November. All of these appointments help us make sure that G is healing as he is supposed to.

So far he is gaining weight at the quickest rate in his life. His oxygen saturation is always in the high 90's,  sometimes even 100%. He has some leaking in his pulmonary valve,  which was expected given the aggressive patch that was used. His tricuspid valve, located between the right atrium and ventricle, is also a little leaky. It was well formed, and its decreased function is a casualty of the surgery. The cardiologist explained that it was "shoved out of the way" when the patch was placed over the hole between the ventricles, and now the leafs don't align perfectly.

We will be watching to make sure that the pulmonary arteries grow with G, and that the PFO (a hole between the atria, left by the surgeon to relieve right heart pressure ) closes on its own. If it doesn't, a surgeon will close it in five years or so by using a tool on a catheter threaded up a vein.

In the long term, we will be watching the pulmonary valve function. Over time, the leaf of the valve from the donor patch will deteriorate, decreasing valve competence. There is a decent chance that he will need the valve replaced in adulthood.

Less time is spent thinking about hearts these days. Most of our time is spent playing and napping. We have been ordered to live in a bit of a bubble for the next while to prevent illness while the baby recovers. Home is our sanctuary. We play (often ), clean (sometimes ), sing (poorly but proudly ) , and carry on with life as usual.

The baby is hugged often. We are so grateful for him. But as wonderful as gratitude is, I hope that this constant feeling of being thankful that he is breathing fades away. It's exhausting living this way. His death still fills my dreams almost every night. I long for the days when most of my thanks are given for trivial things: a meal from a friend, a favour from a neighbour, or a gift from my spouse. Some day, the line between life and death will not seem so immediately important, and we can get wrapped up in living.

As far as milestones go, G is doing very well at sitting on his own, and is trying to cut that first tooth. His gum has had a swollen lump for about 5 days now, but that pearly white is just waiting for the right time to show.

It seems that I will be ending this post here. It's late and my bed is calling. I will try to keep up this blog, but my son seems to keep me pretty busy. Posts will likely be intermittent.

Love.

A quick update

We are all home now, safe and sound. I will write more when I have some time. We are happy, healthy, and ready for sleep! Good night.

An apology to a few doctors

Within a few days of G's diagnosis, I posted about my frustration with the delay to see a specialist. I was coming to terms with reality. My baby had a life threatening disease. Specifically, I wondered how so many professionals had missed the signs. I should cut them a little slack.

When the surgeon first met G, he said that the baby was too healthy to have Tet. We now know that two additional defects, PDA and PFO, rerouted more blood to the lungs. He did not appear sick. If the surgeon - one of two people who see all Tet babies in the province - says he seemed too healthy, I guess the signs weren't so obvious. 

The blueness around his lips did not go away, even when his oxygen saturation was 100%. I guess that is just his colouring. When the docs "missed" his cyanosis, there was no cyanosis to miss.

I will be letting the doctors know about G's special circumstances. For now, I am just so happy that his heart was successfully repaired. Life is good! 

Discharged

G was discharged yesterday afternoon! Yahoo!

We are staying in Vancouver until his follow up appointment on Friday. Then , pending some test results, we will be coming home to the Island!

As soon as we strapped the baby into the stroller yesterday, he was smiling ear to ear. He usually isn't a huge fan of it, but I think he understood that we were leaving the hospital.

We are so thankful for the excellent care he received during our stay. While he was in the ICU, a team of intensivists and the cardiology department saw him for rounds twice per day. They made all decisions together. We didn't need to ask about a second opinion; there were always a dozen opinions! We had daily consults from general surgery from the day he had bowel problems until the day we left the hospital. We had an ICU nurse taking care of G one-on-one. On the ward, he was checked every hour. The staff understands that medicine and tests can be important, but so is comfort and sleep and nutrition. They always weighed decisions and used their better judgement. I am so impressed by the competence and compassion of the hospital staff.

Now we have a couple of free days here in Vancouver. We are going to focus on relaxing and having fun !