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.

A quiet moment

I am sitting in our little office area right now. The tv is off, the radio is off, Gavin is sleeping, Bronwyn is sleeping and Wes is having a nap. All I can hear is the hum of the refrigerator. Wow! This is a precious moment. My soul feels serene. This so great as the last few days have been anything but serene. We had Gavin's birthday party yesterday. It was great fun but definitely not serene.

I have included a couple pictures.

I would ask that you all continue to pray for baby Quinn. He is stable for now but they are praying that he doesn't run into any other complications before they get a heart. He has shown himself to be a strong little man, but the waiting has not been without difficulty and it is very wearing on his health and on his family. I think of Kim and family so much. Most parents can think "That could be us." But you don't really understand how narrow the margins are that separate healthy babies from babies with complications.

I can say this however, that even through Bronwyn and Quinn were born with heart defects they have already made a huge impact on their families and all that know them.

Kids, kids, kids...

We are having Gavin's birthday party on Saturday. I am not sure I can pull it off. I am so scattered in everything I do that I seem to get nothing done. I start one thing, think of something else, start it, realize I was in the middle of something else, stop what I was doing and then start something all together new. Really it seems I am turning into my mother!

Bronwyn is doing great. She is gaining weight and has had good saturations. She is very alert and bright. She gurgled and almost laughed in response to her Dad's laughter this evening. It was very cute. She really has a lovely and happy disposition. Which amazes me after all that she has been through.

Gavin is also doing well. He is asleep in his own bed as we speak! Whew. The problem we are having is keeping him there through the night. He has been arriving in our room in the middle of the night and crawling into bed with us. He is still our sweet baby boy after all.

Wes and I are doing well. He is busy with work and house projects and I am busy, well busy running in circles!

Thank you to everyone who has continued to check on our progress and who has shown such great love and concern for our family.

Embrace the chaos

I have discovered that the secret to serenity with a two year old in the house is to "embrace the chaos." The two year old will only drive you crazy if you expect anything to go your way or to happen with out incident. If you expect to be cleaning behind him, finding bits of fruit in the DVD cases, and vaseline poured into your water glass - well then your day will go as planned. This level of acceptance comes much easier some days than others. The day you are in a hurry is the day he gets away from you while you are changing his diaper and you run around frantically trying to keep poop from spreading through the whole house!

Having said this the antics of a two year old are also the best medicine for any bad mood. If you sit back and watch Gavin work at his world it really is a joy.

Bronwyn is smiling and interacting more and more. I am so pleased with this. I expected some delays in her development as she had such a rough start to her little life. But so far she seems to be within the realm of normal (again as normal as a child of mine can be). We likely wont know until much later if there are any side effects of all that she has been through.

Yesterday when I was changing Bronwyn on our bed Gavin decided it would be fun to have a pillow fight with her. Well, his Mom had issues with that - what a bummer eh?

The above picture is Gavin terrorizing a baby other than his sister. It is Cadence Mackenzie.

So I say - if you have a two year old - embrace the chaos!

Keep praying

Just a quick note tonight. I read Kim's update about baby Quinn and his surgery today was a success. They were pleased with the outcome. But the first 48 hours are very crucial. So we need to continue to pray for his stability and continued success.

I believe deep in my heart that God has Quinn in his hands! So just pray pray pray!

We are good here.

Quick update

I don't have much time to write tonight. Our little girl is starting to fuss and well I guess that means she wants some munchies.

I did want to email to let you all know that baby Quinn is not doing so great at the moment. I would ask that you all please remember him in your prayers over the next week. They will be doing a surgery where they band his pulmonary artery. I am sorry I don't 100% understand the procedure but it is meant, I believe, to stabilize his oxygen levels. This is a very different treatment than anything they did with Bronwyn so I am out of territory that I understand. The important thing is that he needs a lot of prayers and support. Please also remember his parents and family. Having just gone through a major surgery I can tell you that they prayers for peace and reassurance. It is my prayer that they will go into the surgery with confidence.

Kim and family were such a huge support to us.

We continue to do well and I am gaining confidence every day. Yesterday when we were out for our anniversary dinner I felt so thankful. I was quite emotional about all that God has done for us and what a wonderful little family I have. Each one of our children has enriched our lives in many ways. But I know that every parent feels this way about their children.

Oh, duty calls!

Learning to relax

I am slowly learning to relax a bit about Bronwyn's weight. Some nights she gains, sometimes she looses a bit. But on the whole she is gaining steadily. She has been gaining just above what they want her to gain. For this I am thankful.

We are doing very well. Bronwyn is smiling more and more. She really has a lovely disposition. Her brother quite likes her and wants to help with her care. But then he wants to help me do everything. Make dinner, chop vegetables, cook, clean - AGGGH!!! I try to find ways to involve him that don't involve dangerous things like heat and sharp knives. But those are the things that seem to be the most attractive.

I have been enjoying the days lately. I love fall. The clear crisp days are just so great!

Wes and I are going out tomorrow night and leaving the kids with their grandparents. We can't be gone for long as we have to get home in time to give Bronwyn her medicine. Mom and Dad offered to come in so we could go out. I couldn't figure out why and then they reminded me it is my anniversary tomorrow! Oops!

Wes and I have been married five years. So I said to Mom - Five years and two kids later - here we are! Oh dear, Gavin is crying in his bed - I better go see what's up there. Off I go.

Pictures

At times I have problems posting photos with blogger - not sure why. So here are a couple I tried to post the other day.

Fall days

I haven't written for several days as we seem to be very busy. I am happy to report that our business is no different than the business of any family with two young children. We haven't had any "real" scares or situations yet. And we have done our duty with all the medical visits last week. This week should be open for socializing.

For those of you who are wondering if I intend to keep blogging - well I do - just not as often. I started it so that I could efficiently communicate with everyone who would want keep up to date with Bronwyn's progress. Trust me I had no idea of how many people fell into this camp - and we are thankful for each and everyone of you. I found out quickly that it was an effective way to share photos and stories with family and relatives some of whom are very difficult to communicate with because of the miles that are between us. We can also keep everyone up to date with Bronwyn's progress but many of you are in a position to see us weekly or call us occasionally.

My big worry these days with Bronwyn is her weight gain. It is an ongoing and crazy process. One night she is up 100 grams the next she losses. The Doctors keep saying we are looking for steady and progressive growth over the long term not individual nights. But boy of boy how this nightly weigh in affects my attitude. If she's up I am thrilled and all is well. If she is down I am looking for signs of low oxygen levels or signs of a cold or heart failure. It is important that I keep a close eye on her and watch her symptoms but I have to learn to figure out what is real and what is fear based. I am sure the better she does over time the more confident I will get.

Gavin is doing great - he is at this moment sleeping in his own bed!! Yeah! Not sure if he will stay there - but we are please that he went down (second attempt) fairly easy. He is such a funny little guy - he keeps our spirits up. He is talking more and more too.

We are thankful for so much. For all the stress and concern we have had over the last few months we are still totally thrilled with our family and our life. Our little girl is such a great addition to our family. I couldn't have a better husband - he is a perfect match for all my imperfections - he suits me well.

Happy Thanksgiving to everyone and may God bless you all as richly as he has our family.

A fairly normal family

I can't claim to be a totally normal family - that would just be a lie! But we are doing very well. Our biggest struggle since we arrived home was getting settled in and finding places for everything. We had not anticipated being discharged from Edmonton so we needed to go get a bassinet for Bronwyn to sleep in. We set it up beside our bed - Gavin pushes it over to the bed and climbs on the bed and then proceeds to "help" Bronwyn. SCARY! She has survived surgery but I am not sure she will survive her brother.

When I take her out of the bassinet he throws himself into it! He has to try all of her things. We had a melt down last night when we wouldn't let him get into her little plastic tub. I really don't see how he would fit! So as you can see my issues at home (knock on wood) are no different than any parent who has a new born and a two year old. What an amazing blessing this is!

Bronwyn saw her cardiologist yesterday and she was very happy with her. We are so thrilled that she is doing so well. Everyone in the medical community is so surprised by how she is doing. Of course we aren't because we know that God is behind her recovery.

Both kids are napping at the moment. Gavin is having a short nap - he has been staying up very late and refusing to sleep in his room. Who needs more than one bedroom. He is running us ragged - so I am going to try cutting his nap short to see if he will wear out a bit earlier tonight. If this is the worst side effect of having a new baby in the house I'll take it. He really is so good with her.

Bronwyn sees our family doctor tomorrow so after that she should be caught up we can start getting into a routine here.

Baby Quinn had his procedure yesterday - I think they put a stint in his septum. I find this stuff all quite hard to understand. But I sure am glad that there are men and women who have devoted their lives to making sense of it. The Doctor is very happy with how it went and they are hopeful that this will by him the time he needs for a heart to come available. So please keep praying for them. I honestly can't think of anything worse than the waiting! Kim and Ben are amazing in their strength and courage.

God Bless you all and thank you for your continued prayers!

Life starts again

So here we are at home. I feel like we are just resuming our life - that we pressed the pause button for a couple months and are now just trying to get organized and back into the swing of things.

Gavin is in his crib at the moment yelling "Why, whywhywhywhy!!!" This is what he yells now when he doesn't want to go to bed. We weighed Bronwyn tonight and she hasn't gained enough weight over the last couple days. I hope it is just the transition to home and that she will start gaining again tomorrow like she was in the hospital.

We went to church this morning and saw so many of our friends and family. It was the first time Uncle Jon and Auntie Cindy were able to see Bronwyn. Robbie and Carissa were quite impressed with her - Carissa more than Robbie. He came up and asked me - Who is this?

It feels so great to be home amongst our friends and support people. We of course are also thankful for all our friends who have been supporting us from afar. We appreciate your concern and love very much.

Tonight I would like to ask that you all think of baby Quinn in the morning. He is having a procedure to help stabilize his oxygen levels and his heart. Please pray that all goes well and that he will recover well. The best thing at this point would be for a heart to be available so that they don't have to consider other treatment options that would be headed down a different road.

Our house is a disaster at the moment as we have moved everything back in from Edmonton but even with that it is great to be here.

We are home

Feels great!

Latest news

We are being discharged straight from the Edmonton hospital. The Calgary hospital stalled so long that there is no point in going there now. So we will be seeing many of you soon.

Bronwyn is doing well. The issue we may have is reminding people that she is still a sick baby. She looks so great and is doing so well that it will be very easy to forget. It is like a mechanic working on your car's engine and Friday afternoon he hands you the keys and says - "I'm not done, but you can take it for the weekend. Just don't drive too fast or go to far and if you see any smoke coming from the engine get out immediately!" So for us coming home is scary but also so exciting.

I get teary eyed when I think of everyone who has helped us so much. All the staff here, all the friends who have called, emailed or visited, all the prayers, our neighbors at home who have taken care of things for us, other parents here who have supported us, oh and the list could go on and on and on. I do know that I could not have managed this far if it wasn't for my husband and my parents. Mom and Dad have done so much - they have basically been at our disposal as we need and have cared for Gavin as only Grandparents can. Mom told me the other night that she and Dad have decided they are not going to have any more kids!

Bronwyn has been on the high end of the recovery scale. One of the nurses today told me that they have not sent a Norwood baby home without a feeding tube in a very very long time. We are so thankful that God has given her the strength that she needed to not only recover but recover with flying colours. We just pray that He will continue to carry her forward and give us peace knowing that He is watching over her.

Many of you have asked about baby Quinn. I have been slow in responding as there has been a fair bit of debate about which treatment option they should pursue. They are concerned that he is not stable enough to continue just waiting for a heart. They are deciding what procedure/surgery option should be attempted. Kim is handling it all very well. Some of the best doctors in the hospital/Canada/the World, are working on the situation and I am confident that God will guide there minds and hands in all that they do. So continue to pray for Quinn and family.

You can also pray for my new little buddy Noah. I can't go into details but he is 10 and just a great little kid. God knows what he needs so we just need to pray that he gets it.

I will keep you all posted about our return home.