Monday, July 25, 2011

Talking about surgery

I have been told by other parents, that I should blog about our struggles with Noah's health issues because other people with chronically ill children may benefit. With that in mind I thought I would blog about a big issue: how to tell your child that he has to have surgery - for Noah, one that he can't live without. At Sick Kids we are blessed with Child Life Specialists who talk to kids about surgeries and are absolutely amazing. However, until our pre-op clinic, we have to handle it ourselves.

When we went to cardiac clinic two weeks ago, we told Noah we had to do some tests on his heart. He thought they were fixing his heart, and told us so. We didn't agree or disagree but he seemed ok with it.

On our own, Keith and I both started talking to Noah about the surgery. We aren't trying to dwell on it too much or he will be more afraid of it arriving, but we do want him to be aware of it. A few nights ago, when Noah was telling me how he took a train, subway and bus to the hospital two weeks ago, I told him we would be going back soon for the doctors to fix his heart. He was ok with this and sort of brushed the thought aside and kept telling me about his train trip.

Last night, while Keith was putting Noah to bed, he also brought it up by telling him he would have to go to the hospital soon to get his heart fixed. In a completely gut wrenching moment, Noah told Keith he was scared. Keith answered him in the best way possible by agreeing that it was scary, and that mommy or daddy would be there with him at all times. It is absolutely important that we don't lie to Noah by telling him it isn't scary or that it won't hurt. We both refuse to do this - it will just serve to make Noah loose trust in us. As a nurse you are taught to be honest, but that doesn't mean you can't add a bit of hope in there: "Yes, this will hurt, but I will hold your hand and when it is done we can pick out a toy out of the treasure chest" (A box of trinket toys for kids around Noah's age who are afraid of procedures that will hurt).

So at dinner last night Keith was telling me, for Noah's sake, that they had spoke of going to the hospital soon. Noah instantly got a scared look on his face. I just reiterated that we will always be there for him - either Daddy or Mommy. But that we also have to look after Layla, so we will take turns staying with him.

I am trying to not dwell on it too much - so as not to make him fear the event. But I also don't want him walking into the hospital in a month's time, thinking we are just going for normal tests again. I am not too keen on telling him they will be cutting him open to get to his heart - so I am leaving that for the Child Life Specialist, who uses a muppet-type of doll to explain this. Anyone who has had a child go through surgery at this age knows how tricky it can be. I do, however, thank the heaven's that we were able to hold off until he was 3 years old because at 2 years old he would have been hard to reason with and speak to so this makes it somewhat easier.

He is doing ok otherwise though. We went for a long bike ride and he pedaled most of the way - he got tired near the end but after a short break he was excited to go again. He isn't eating much lately, which I suppose is to be expected - with heart conditions, when the heart doesn't work optimally, one of the first places to take notice of heart failure is the stomach (think of the fight or flight response - same deal). He is still laying around a fair bit but he doesn't look ill to me. I am thankful we are going to repair his heart, because having a surgery hanging over our heads for the past two years has been very hard and we have hope that he will feel and act much better after the surgery, even though his heart still won't be 100%.

So that is our current struggle surrounding the heart condition. It consumes a lot of our brain power and emotions but we still carry on our day-to-day living, which at times can seem odd given what we face in a month's time.

Monday, July 18, 2011

The end of breastfeeding

All good things have to come to an end, I suppose. As my La Leche League book tells me, "Everybody weans". I have loved breastfeeding from the moment I figured it out with Noah. Before babies I knew that I wanted it to work out for me and through many tough moments, both my children nursed until approximately the same age. We made it through Noah's surgery, tongue ties, too much milk, fast flow, lazy nursing, fast nursing, returning to work and name it. 

On September 1, 2009 Noah weaned abruptly. He was 16 months old I made a post on a parenting forum, entitled "Crushed": 
UGH I just went to put my son to sleep and he refused to nurse. He just wanted me to put him into his crib. As soon as I did he fell asleep. He has never, ever refused his bedtime nursing session! 
I kept offering and he kept biting me. I thought he just didn't have a good latch so I kept trying. He bit me hard and I said "NO" out of pain and his face crumpled and he sobbed. UGH that is just a lovely nursing memory isn't it?

I hope this isn't in response to the pregnancy. I can't imagine he gets much b/c he only nurses the one time and never for long before he is asleep. I am terrified to try again b/c all I can think is that our last nursing session will have been yesterday where I just spent my whole time reading perezhilton. Lovely....

I left his room and sobbed. I am fairly certain my husband thinks I am crazy!

I was, without a doubt - devastated. I got over it though because I was pregnant with Layla at the time (so I would be breastfeeding again in only 7 more months!)

I have one photo of me nursing Noah, laying in bed together when he was a toddler. 

I have suspected Layla was close to weaning for a while. She hasn't relied on it for a long time but I push it because I didn't want to stop. Today, on July 18th, 2011 I think I have to throw in the towel. Layla is now 15 months old, exactly. It has been three days in a row where she has refused. Personally, I think it is due to her teething, as she has refused to eat at school today too. However, since this is day three perhaps I should take this window of opportunity and wean her. I share similar thoughts to my last weaning session - as I didn't really "appreciate" the last time I nursed. In fact, the last few times were comical. She would lay down, nurse for a bit, then sit up and pop between both sides while trying to nurse and rest her cheek on my chest. Then she would giggle and pop back on. I have known for a few months now that she was close to being done and I would watch her nurse and think, "this could be the last time". I tried to cherish it, but I am left with the last few days as a memory - her arching out of my arms trying to get to her crib. Oddly enough, the same way Noah weaned. They are just a month apart in age from when they stopped. Similar to Noah, I have one photo - a self portrait - of our time nursing. She wasn't a cuddly nurser - she was all business with breastfeeding. It isn't a great photo but it is all I have. 

I am not sure if we will have another baby, so this is very sad for me. I am sure most people will think I am crazy but at least I'm not sobbing this time!

Thursday, July 14, 2011

Noah's heart

...and so, Noah needs more surgery...and soon.
That is all we know up to this point.

As I tell people this, I do so in a detached manner that seems to alarm the person on the receiving end. I was telling Noah's teacher yesterday who said, "Um...this is a small surgery?". I respond, " is open heart surgery". She looks at me and says cautiously, " are handling this....well....". It sort of makes me feel like a horrible parent. Keith is a bit detached too. To him, we knew this was coming so it is just what we expected. To me, I seem to be spitting out the information but  not absorbing it. I talk about it in that detached manner nurses do: "I have a repaired VSD, ASD, Co-arct patient in room 6 here for pre-op workup for a muscle bundle resection and valve repair....". It is slightly demented how I am treating it, to be honest. I am walking around acting as though I didn't receive devastating news yesterday. I think every minute though, my layer of ice is melting and some poor sap will ask how the appointment went and I will finally dissolve into tears of grief.

Don't get me wrong, I did tear up as I BBM'd my brother to tell him what was going on as I stood booking his next appointment in the cardiac clinic. He was (and always is) the first person I tell these things to and he always says just the right thing to make me tear up. He is always very supportive. I didn't want to cry in front of Noah though - he doesn't know what is happening. He knows his heart needs to be fixed by a doctor, and that is it so far.

So the day was ok. I always have minor panic attacks walking into Sick Kids these days. After working there for four years in total, I find that those memories and experiences are completely obliterated and replaced by the memory of the hospital stay with Noah. Truthfully, the incident traumatized me, and likely Keith. But I can't really get past it. So I was a bit anxious all day. We took Noah on the train and subway so that distracted us. He was such a good boy.

When we got there, our appointment was supposed to be at 9am and they told us it actually was at 11am. Noone called to tell us so I got quite upset. They saw us at 9:10. They were great and explained to Noah what would happen and he lay on the table, quietly watching Treehouse tv for nearly an hour and a half. He fell asleep at times and was quite warm (Turns out he also had a fever of 103 degrees - not sure why yet). After the echo he had an ECG where he just lay quietly on the table again, prompting the RN to ask him if he "is always this serious".
We had to eat lunch and pass some time while we waited for our 12:30 appointment with the cardiologist. This wait was the longest because we knew the news would be bad but we just wanted to hear it. We had to see a fellow first, and that was even more torture because she couldn't tell us what was wrong yet. Finally we see our cardiologist and basically all he could tell us was that the muscle that is building up under his aortic valve has gotten so crowded that we can't wait any longer to do the surgery. He couldn't tell us if the valve needs replacing or anything more. We have to wait until his case is presented to the surgeon and cardiologists on Monday. Keith asked some great questions and I felt like I just sat there with a goofy look on my face. Somewhere between a grin and a grimace.

Noah fell asleep on the bus ride home - and then we were settled on the couch (him, slightly febrile still) relaxing and watching tv.

I carried on (as did Keith) normally. Making jokes, playing and having a good time with the kids. After Noah had some Tylenol he was a bundle of energy and we had a great time playing. For yesterday, at least, I refused to let his defect and surgery affect our time together. I refused to sit beside him on the couch quietly crying. I just wanted us to have a normal and fun time. And so, I let him throw foam blocks at me and laugh hysterically, even though we aren't supposed to throw toys at people, because lets face it - the kid needs to be let off on some of the rules now and then.

Sometimes my mind wanders to all that can go wrong. I know all this from working there and this knowledge destroys me. I think of when he will be healing and we have to remove his chest drains or pacing wires and how it will hurt him. I think of him laying in bed, intubated and on a ventilator. It is gut wrenching. I can't get these images out of my mind and that is why I choose to be numb for now. When he was a baby it went so fast and was a life-or-death operation. We didn't have time to dwell on the situation. With a week old baby, you are coping with being a new parent, mom has post-partum healing herself, struggling to figure out how to breastfeed, living on no sleep. We had no choice but to deal and move on. This time, the's excruciating...

So, as I type this, the ice melts a bit more and I get a bit more sad. Waiting for Monday and even for our surgical time (which will be before Halloween) is like a huge weight hovering over us. Once we get that date, we can set forward with our plan: who will stay in the hospital, who will stay with layla, who will work, who will watch Jade, etc. We plan for 10 days in hospital and who knows how many more days at home recovering after.

I will update when I know more. :)

Thursday, July 7, 2011

To have more children or not...that is the question....

As I approach Layla's 15 month milestone, I am reminded that I was just finding out I was pregnant with her when Noah was 15 months old. Keith and I have had this argument since we were married - how many children do we want?

Keith, coming from a two child family, is ok with stopping at two. Most people would probably agree with him: we have the "million dollar family" - a boy and a girl who are both lovely children.

I come from a 4 child family and I love the idea of a bigger family. I loved the noise, the chaos and the fact that if I was mad at one sibling, I still had two others to hang out with. To me, two is way too small. As I always say to Keith: "If Noah and Layla are fighting, who do they hang out with?!?!"

We have seemed to decide (informally) that 4 is too much. Three may be ok - but there is a constant debate in our house: With two, you can move on from the baby phase (the diapers, potty training, breastfeeding) and start saving for nice vacations, educations and house renovations. We both grew up in families where we didn't take annual trips to cottages or various vacation locales - so it isn't like this is something we need to have annually, but it would be nice to give to our children. We have had only one vacation since having children, when we took Noah on a car trip through New England. It would be nice to go on another trip relatively soon, with both children.

There is also my career to think about. I have just finished my Masters and yet I haven't found a permanent job. I have worked contract for four years due to school and back to back maternity leaves. This has also left a slight financial strain on our family, despite us both making good salaries. Also, as vain as it sounds, this is the best shape I have been in since my wedding and I am kind of enjoying it!

And so, we are approaching the time where I would want to make a decision. I loved having Noah and Layla 23 months apart. It seemed perfect. I would want to have another child relatively soon, as I don't want Noah to be too much older than the youngest child.

However, Layla (over the past few weeks) is going through a particularly difficult phase: kicking and screaming tantrums, biting, hitting - all of which I attribute to her final eye teeth coming through and the cold/eye infection she is currently plagued with. Yet, with her being such a handful it does make us wonder if two is just perfect. Simultaneously, Layla is also the most cuddly and lovable toddler ever - she will sit on my lap and cuddle into my chest all evening while we wait for dinner to be ready. She loves to be held and she has the most infectious smile. Similarly, Noah is the most polite child I have ever met: saying please automatically and apologizing more often than necessary. He is a lovely and gorgeous boy who will obviously be a lovely and gorgeous man one day. My kids are, honestly, amazing and beautiful - and seeing the children we made and how they each are their own little person, with their own (very different) personality traits makes me really want to see what else we can make.

I don't want to live a lifetime of regret at stopping at two if i really wanted three - but I just don't know what to do right now. I didn't really appreciate my last pregnancy as being "the last". I am still nursing Layla and I am hesitant to stop just in case I don't get to nurse another little baby.

We have made one decision - we won't actively try for a third. It was very hard going to a fertility clinic with Noah (luckily Layla was just a lovely surprise). I don't want to go through the emotional turmoil of "trying" again - it is very hard. So if we do decide three would be ok, we would leave it up to fate.

And so, as my biological clock ticks away, we sit and watch Layla having a tantrum on the floor and our current decision may be to stick with two - but I am fairly certain my mind will change once those eye teeth come least until the 2 year molars begin to come through....