My albatross

There are very few things in Bronwyns care that give me consistent worry. I have moments of concern and down right fear but on the whole I manage to be pretty calm. The one exception is her weight gain. As long as she is gaining decent amounts of weight I am fine, but...

This last week she didn't gain anything at all and that is coming off of another week where she had gain but not as much as expected. I keep telling myself that normal babies grow in spurts and have lulls in growth so I should expect the same for Bronwyn. I call in her weight once a week to a dietitian. I always feel like I have to have reasons for bad weight gain.

Many of you are still unclear about what this issue (among others) means for Bronwyn. As one medical student said to me "I'll put this as simply as I can..." (how funny eh?). The big issue is with weight gain is that it shows she is thriving which means that her heart isn't working so hard that she can't pack on a few calories. It takes Bronwyn much more energy to do things than normal babies so she is at risk of burning off too many calories while eating and not being able to store them. The second issue is that the bigger she gets the better. The bigger her body the bigger her little heart will be for the second surgery.

This week we don't have any appointments or bothers for her and she is taking her bottle better than before. So I hope that she will gain well this week.

If there are other parts of her treatment/progress that anyone reading doesn't understand please feel free to ask and I can add any info necessary. I don't always know what to explain and what not too.

A formal apology

I took my camera into the Canon place today and apparently the flash is broken. It was also apparently a co-incidence that it went when Gavin was playing with it. He did not cause the problem. So I have unfairly accused him - it was not his fault!

We have started our nightly bedtime gong-show. I think Gavin is cutting his two year molars. Well I hope it is his molars otherwise his sleep patterns are for the dogs for nothing. Bronwyn has been getting fussy at night too - only when we lay her down (how dare we!). Last night we got Bronwyn quiet and in bed and then Gavin started to cry. Wes was in the bathroom brushing his teeth so I went in with him and locked the door behind me! What a coward eh?

This is the time of year that I usually wake up and realize that Christmas is just a month away and I have done nothing. We may actually have a Christmas tree this year. Last year we bought decorations but never actually put them up. All we need this year is a tree. I have never in all my adult life had a Christmas tree in my own home. I have started telling people that I have religious objections to Christmas trees - this is easier than admitting that I am just too lazy!

My son is standing at his door crying "Mom, Dad, Mom, Dad... " The poor little mite.

By the way Bronwyn has an MRI scheduled for December 8th to see if it is actually a blood clot in her heart or not. They will also use this information to decide if she is ready for the next surgery. I hope we can take her off the inoxiparon after that as her little legs and arms are starting to look like pin cushions.

Well, we are all exhausted - well everyone but Gavin that is - so I best go and see if I can't get him to settle for the night.

Really Quick

We have been doing very well. Gavin is as busy as a two year old can be. Bronwyn had her immunizations this morning - so far so good. She was really super put off by the process though. Won't it be nice when we get to a place where she isn't poked and prodded so much. That is my hope anyhow.

Well - missy is starting to cry so I best run.

I understand from the last update that baby Quinn is stable and holding his own. Thank God for that! So we need to just continue to pray for a heart - I can't help but feel like good news is just around the corner!

Best go.

Update

Bronwyn had another echo yesterday and they aren't sure it is a blood clot. The doctor wants to do an MRI to see if it is muscle tissue or a blood clot. She is also hoping that the surgeons will be happy with the info they get from the MRI so we don't have to do the cardio-cath, which far more invasive. I am so pleased that our doctor cares so much that she not be subjected to more than she should.

She was also not overly alarmed by her sats either. And since they removed the patch that was in her leg to help administer the inoxiparin she has been a much happier girl. She is back to her old self. I am having to give her injections now but that is far easier on her than the patch.

Well - I haven't much time today. So this is just a short update to say that things are going well and I am feeling much more relaxed about everything.

Pictures

This may be the last of the photos until I figure out what our son did to our camera.

Check up day

We just finished the evening "putting Gavin to bed" ritual. Wow cribs have their benefits! He doesn't seem to understand that we are the parents. I think he sees us more as facilitators. I have just barely enough energy to write about our day.

I was anticipating that this would be an encouraging and trouble free report as Bronwyn has been doing so well and we have had so little concerns. But... I guess today was a bit of reminder of how tenuous our situation is. Bronwyn did well over all. She didn't enjoy the process and was extremely angry during her echo. She expended a great deal of energy crying and fussing and carrying on (wow she is just like her mother). The shunt seems to be fine and the functioning of the heart seems to be fine. There is however a blood clot in her heart. I am glad that she has a very relaxed and calm doctor. So when she says things like, "Well, that is in a bad place, if it breaks loose it will go straight to her brain and she'll have a stroke," she is so calm that it is hard to panic. That is until what she said sinks in. She has been put on a blood thinner now and I had to go back to the hospital and be taught how to administer it.

I guess what was more alarming to me was that when they checked her oxygen saturations after the echo they were low. Dangerously low. The doctor was fairly alarmed. I assured her that we have been getting much better numbers at home and we check every evening. I have never seen saturations that alarmed me at home. I suggested that perhaps it was the crying. She agreed it could be. As we were talking her sats increased into far more acceptable numbers. The doctor is concerned that she may be de-sating when she cries. This could have long term impact on her brain. We don't let her cry like that at home (if we can stop it) and she is not a baby who is prone to crying. I guess it just alarmed me that there are things that are going on that I just cant tell because I can't see inside her little system.

We are however not discouraged. It was fairly unrealistic to think that a baby with her condition would sail through all her appointments and not have any complications. We are pragmatic and thankful that they continue to stay right on top of all the developments.

They are doing a scope in a couple weeks to check out the heart and lungs. What they find in the scope will give them an idea of when they will do the next surgery. We are now thinking it will be roughly mid January, unless there are complications that need to be addressed sooner or complications that cause a delay. Wow, was that a firm answer!

I have to say that I just love her cardiologist in Calgary. We have been so blessed by having caring and gifted people attending her all through this.

So it was a bit of a stressful day. Trying to get Gavin up from his nap and into the car to get back to the hospital to meet the thrombosis people was well a great part of that stress. Can't get him to bed, can't get him up! Oh to be two again.

Quick note

Just a quick note to say that we are all on the mend and that Bronwyn faired quite well. She didn't gain as aggressively as she should but she still gained - which is still impressive as she had a head cold.

For those of you who are curious - she weighs just a hair above 10lbs now. I think Gavin weighed 14 or 15 lbs by this point - but he was a much chubbier kid from the start.

Continue to pray for Quinn and his family.

Stay warm - except my family in Africa - you stay cool!

We are sick

Well it has happened - we all have head colds. I am likely the least effected. I was hoping that as I have a bit of a cold that I would pass on antibodies to Bronwyn and she wouldn't get sick at all. But she is sick. So far she doesn't seem too bad. I know it was unavoidable with a two year old in the house - but it is complicated by her condition.

I remember the first cold Gavin had. I was so scared that he would get sick and when he finally did he lived through it and it wasn't so bad after all. But I was a nervous wreck. How things change! I was concerned that Bronwyn would get sick but I just knew it would happen. When I woke up this morning and heard her snuffling I didn't panic. I called her cardiologist and had a chat with one of the nurses there. We are just keeping an eye on her for now and monitoring her saturations. Imagine calling the cardiologist as your first course of action to a head cold! How crazy is that!

Gavin is quite cranky and Mommy is finding hard to manage the whole sick family. The kids are napping now so after I do a load of laundry I may try to catch a few winks myself.