Friday, December 29, 2006

Why I believe

The other day I was thinking about my Faith and how important it has been to me over the last few months. I started to wonder - Why do I believe? My mind instantly races to all the evidences that I see of God's hand in my daughters life as well as my own. I look back over my life and see so many instances that are proof to me of God. But you know this isn't why I believe. This is just evidence of my belief.

So why do I believe in God? Many years ago I heard a quote attributed to Albert Einstein(I can't verify this quote - sorry). A reporter asked him if he believed in God. His answer was yes. The reported then asked why. The genius responded "Because the alternative is unthinkable."

That answer really spoke to me. I don't want to think that I believe in God because its the scenario that I like the best - but really when I think of it a life without God is, for me, unthinkable.

I never knew a time when I didn't believe in God. He has always been a major part of my life. I was raised not only going to church but believing that God was a part of my every waking minute. My parents have given us great gifts and help over the years - but the thing for which I will always be most thankful is the clear and careful path toward God that they marked in our childhood.

So why do I believe? Well I always have I guess. But I feel I am a stronger better person because I serve a God with purpose.

Tuesday, December 26, 2006

I have to brag


Here is a picture of the dump truck that Wes made for Gavin. He still needs to varnish it but other than that it is done. Didn't he do a great job.

What a talented husband eh?

Monday, December 25, 2006

Christmas miracles




So it is officially Christmas day. I am awake and I can't sleep. To busy thinking! Actually thought I'd wake up for that blasted Santa person - who prowls around in the middle of the night.

I have been thinking a lot of what an amazing Christmas this has been for our family. We are celebrating Christmas as a family of four - something we were not sure was going to happen. We are daily thankful that we have our daughter - it is just some how more magnified at a holiday/family time like this. We are nearing her second surgery another milestone we weren't sure would come. By the way we don't know yet when our surgery date is but it will be roughly end of January.

We are of course beyond thrilled for Quinn and family. We haven't seen an update in over 24 hours but we continue to pray that he does well and starts to navigate his way through all the recovery hoops that come up. We ask that you please keep them in your minds and hearts and pray for them as this is a very critical time for Quinn. These little fragile babies of ours have done more in their short lives than most of us will be called to do.

On the lighter side. Here are some of the miracles that have occurred in our house this Christmas:

1. We have a Christmas tree. This miracle is courtesy of Home Depot. Wes called Saturday (yes two days before Christmas) and asked if I wanted a tree because Home Depot was giving them away. My initial response was - No it is two days before Christmas - why bother! But my husband, whom I suspect of being more sentimental about Christmas than I am, pushed back - so I said yes - who can argue with free!

2. We got to bed before midnight. Well at least I did. This miracle was primarily caused by the fact that I required much less of myself this year. I lowered the bar substantially and I still managed to forget a couple important things - but just a couple. We tossed the kids in bed and wrapped the last of the gifts. Wes was working on his gift for Gavin - he has been making him a truck - it is done - just not varnished - another miracle.

3. I took my kid for a visit with Santa. You may or may not know that I am very ambivalent about Santa - I haven't figured out if we are going to do Santa or not. So to see me running down the street with Gavin in my arms, under-dressed, in the cold, to see Santa who was going around Langdon with the Fire Truck - was a miracle. Gavin loves fire trucks so it was way cool for him.

I guess I should be getting back to be so we can enjoy our Christmas morning soon. I need to go push my way back into bed. Apparently getting to sleep in a bed that isn't littered with children is too much to ask for this year - maybe next, or the next...

We wish you all a very Merry Christmas. Hold your loved ones close everyday. One thing we have learned from our daughter is that every moment is precious - Christmas or not.
PS - I just realized looking at the photos I posted that my son is in pajamas for all of them. Just in case you think this is just a matter of timing, it isn't. The hardest part of my day is getting Gavin out of his pajamas. He LOVES pajamas. There are days I just won't fight it. So as a result all the photos I have of him lately are pajama shots!

Friday, December 22, 2006

Great news

I am just so thrilled right now. I just got a call from Kim, Quinn's mom, they are getting a heart today! I am just crying while I write this.

I don't have any more details, but I wanted to share this great peice of news.

I also want to ask everyone who can to pray that the transplant surgery goes well and that Quinn manages this as well as he has all his other challenges.

I very firmly believe that God has this family in his hands and that he will look after them!

What great great great news!

Tuesday, December 19, 2006

2006 Christmas Card


All right - I decided that I would liberate myself from Christmas cards this year. I gave up local cards years ago but I still to this day hand write greetings to family and friends who don't live near by. I enjoy it, to be honest, and I will resume the ritual again another year. But this year I just don't have it in me.


So here is my plan. This post is my Christmas card. But to make it interesting I'd like for everyone who is still following our blog to post a Merry Christmas back to us. We would love to hear from all of you even those of you who are shy. I do recognize some of you are unable to comment because of technical issues, but if you can send us a note and add where you are living.


So from our house to yours we wish you a very merry Christmas and we wish rich blessings in the new year.

Sunday, December 17, 2006

A request

I am dropping a quick note to ask that you all pray for Quinn and his family. Just in case you have lost track of time (which is so easy to do). It has been 4 months since he was born and they are still waiting for a heart.

Any of you who read this blog who pray - please pray now. For Quinn's stability while he waits and for his family as they sit by and wait with him.

Quinn's parents are encouraged by all the prayers and I know they appreciate everyone who thinks of them.

Wednesday, December 13, 2006

Funny story

Last night Wes and Gavin had to get a flu shot. We all have to get them this year because of Bronwyn. I had mine earlier so the boys went last night. We all went together. I was worried that Gavin would cry and be upset so I picked up some little horses at the dollar store and had them ready while the nurse was giving him the needle.

Wes was holding him, he got the needle and he didn't even flinch. I gave him the horses thinking he'd have a delayed reaction. He turned to the horse and said with excitment "Horsie, horsie!" The nurse was floored she couldn't believe his total lack of reaction.

What totally killed me was as we were leaving the clinic Gavin said "Thats fun." I asked him - "Did you say that was fun?" He replied, "ah,huh" (that's yes in Gavin speak). Wes and I just laughed so hard at that.

Tuesday, December 12, 2006

It is never straight forward




I got the results from Bronwyn's MRI today. It was a bag of real mixed blessings. I try hard not to see any test she has as a simple yes or no answer because if I do I am caught off guard by the "buts." Does she have a blood clot? No, but... She has a narrowing in her shunt and a slight narrowing in the aorta (the aorta created during the first surgery by grafting vein material onto the pulmonary vein). What does this mean? Well to be frank this is the biggy that we have been worrying about since we brought her home. If either of these areas collapses or gets blocked she will go into cardiac arrest. This is serious but we are on the verge of the second surgery and they will be discussing what to do and in what order.

There is a fair bit of good news. First, the treatment that she has been receiving for the blood clot is in fact the same medicine used to treat a narrowing of the shunt. So we have been treated this unknown problem for over a month (I see God's hand in this). Secondly, it isn't too severe of a narrowing or they would have her hospitalized right away. Finally, she is not showing any symptoms of heart failure so the narrowing hasn't affected her functioning yet.

What's the next step? - well that is the question! Next Tuesday they will meet via phone with the surgical team in Edmonton and discuss time lines and procedures. So I will know more mid next week.

The only other result from the MRI that I confess I don't know enough about and need to discuss more with the Cardiologist is that the area that they thought was a clot is a muscle mass and they think there may be an aneurysm underneath it. So I need to find out what this means and what they plan to do about that.

So you see - it is never as simple as "No, it is not a blood clot."

It is still very hard for me sometimes when I look at my lovely little girl to believe that she has so many issues deep down in her little heart!

Saturday, December 09, 2006

Seriously


Bronwyn's MRI went well - she was put under general anesthetic. She recovered well. Her oxygen saturations were a bit low - a bit scary for me. But I think it was just from all the strain of the ordeal. Her sats have been just fine today. She is right as rain today and I hope that they will have their results mid next week. There are two outcomes of this MRI. #1 - to ascertain if she does have a blood clot in her heart or not and #2 - to decide if she is ready for the next surgery. For those of you who like to research these things the second surgery she will have is called the Glenn's.


As you likely read the rest of the family (the male population) has been sick - but they are on the mend. Now if I could only get Gavin to go to bed!

I'm not sympathetic



For those of you don't know me too well this may come as a surprise. I am not a sympathetic person. I come from a long line of women who lack that virtue (sorry to rat you out Mom). Why have I brought it up? Well we have been sick in this house and by we I mean Wes and Gavin. This is how the last week and a half went.

Wed - Wes says he has a sore throat I say - well go to bed you need more sleep or you'll get sick and we don't want that.

Thur - Wes stays home from work because he is very sick. I am sympathetic but feel if he got more sleep he wouldn't be sick.

Fri - Wes is still sick but ventures to work. He goes to bed early and I figure that should fix him.

Sat - Wes is still sick - I am now getting tired of this! I drag Wes and family out to the mall to do some Christmas shopping - just what every sick person wants. After fun family time Wes has a long nap to recuperate.

Sun - He starts coughing. OK - all my sympathy and concern has dried up. He coughs all night - I get crankier and crankier and finally ask him if he has any control over how much he coughs. He claims he doesn't.

Monday - Still coughing - For the love of peter stop it! I am getting progressively crankier and more tired.

Tues - Well great - now Gavin is sick! I have a great deal of sympathy for my poor boy except he feels so yucky he wants to sleep with us. Will I ever sleep again?

Wed - Bronwyn is very fussy - it is 1 am and I am still trying to get her settled. Wes' coughing wakes her up! I have a temper tantrum - Wes feels bad about the coughing and goes and sleeps in Gavin's bed (since he's in our bed anyhow). Gavin cries because Daddy has left the room.

Thurs - Now Gavin is coughing all night. We have to give him some Tylenol in his milk as he won't let us give it to him. Neither of my children take medicine easily. I have been so anxious that Bronwyn not get sick before her MRI as they will delay it if she has a cold.

Fri - I am past the point of caring anymore. I am exhausted and they are both still sick. Bronwyn has her MRI. They put her under - she does very well.

Sat - Wes is finally feeling better - perhaps there is an end in sight after all. When will this child go to bed.

So you see - no sympathy at all - my poor enduring husband!

Monday, December 04, 2006

Winter fun


We were at my folks house yesterday afternoon. Jon and Cindy and the twins were there too. Grandpa and Grandma had them all outside for some fun on the sled - I took Bronwyn out for a photo op. (just in case you might worry that I'd let her ride with those hooligans!).


We are having a total down day today. Gavin had a rough weekend going here and going there - so I told him he could do whatever he wants today. So he is sitting on his pooh couch watching the Hefelump movie in his diaper! How could life get any better eh?


We had a visit from Melanie and Cadence, the girls enjoyed their visit. They smiled and laughed together and had a couple good cries together - isn't that what best friends are for??


Bronwyn has her MRI at the end of this week, so we will hopefully have some news after that.

Wednesday, November 29, 2006

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.

Friday, November 24, 2006

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.

Monday, November 20, 2006

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.

Thursday, November 16, 2006

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.

Saturday, November 11, 2006

Pictures



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

Thursday, November 09, 2006

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.

Monday, November 06, 2006

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!

Thursday, November 02, 2006

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.

Sunday, October 29, 2006

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.

Wednesday, October 25, 2006

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.

Friday, October 20, 2006

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!

Thursday, October 19, 2006

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.

Saturday, October 14, 2006

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!

Thursday, October 12, 2006

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.

Wednesday, October 11, 2006

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.

Sunday, October 08, 2006

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.

Wednesday, October 04, 2006

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!

Sunday, October 01, 2006

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.

Saturday, September 30, 2006

Friday, September 29, 2006

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.

Thursday, September 28, 2006

Grandma's Poem

(This if for your benefit Eric)

My Door to Peace
by Lavine K. Bailey

Whenever I am troubled, and
Lost in deep despair,
I bundle all my troubles up,
And go to God in prayer.

I tell him I am heartsick
And lost and empty, too,
That my mind is deeply burdened,
And I don't know what to do.

But I know he stilled the tempest,
And calmed the angry sea;
I humbly ask if in his love,
He'll do the same for me.

And then I just keep quiet, and
Think only thoughts of peace:
And if I abide in stillness,
My restless murmurings cease.

Monday, September 25, 2006

Glad I didn't write earlier today


Yup - I was a bit of a mess earlier today. Bronwyn lost weight overnight - which is the first time in several days. And it was all my fault. I made a total and complete mess of her medications last night. Yesterday was the first time that I have had to give them to her orally (she pulled her feeding tube out again yesterday - they decided to leave it out). It is a long story but I basically botched it badly and upset her and caused her trauma. She slept a long time over night and didn't eat as much as normal. So the result - weight loss and one upset mommy.

The nurses and staff were all very understanding as they agreed with me that it is best that I blow it while I am with them so I can learn in a protective and professional environment. That is the plus side the down side is that every mistake I make is monitored. It is like learning to drive with a back seat full of formula one race care drivers. In a normal situation you make a mistake you feel awful - but only your husband and a few sympathetic girlfriends know what happened. Here I am explaining to a group of doctors and residents and nurses why I think she lost weight - basically - her mother is a boob!

Oh well - I got over it and we had a pretty good day today. I went down stairs found my good friend Kim, who was holding her baby Quinn, cried on her shoulder a bit and then regrouped. I then came back up and had a good chat with the dietician and she would like to see Bronwyn gain more weight that she has been over the last week. So we will start giving her a bottle a couple times a day with breastmilk and a concentrated formula. This should give her that extra boost to get her really gaining.

I was also sad last night because we were out on a day pass again. Wes dropped us off at the hospital and he and Gavin drove back to Calgary. That was sad for me - but hopefully we will all be back together again here soon. From what I hear it is a good thing we are not in Calgary - I hear the move has made the Childrens' a bit chaotic.

I had a bit of an eerie happening. My mom left me a copy of the latest Sister Triangle (plug - my Aunt Mary and cohorts' little publication for Christian women). I opened it up and saw in the index that there was a poem by Lavine Bailey. Well, at first that freaked me out a bit. For those of you who don't know - Lavine Bailey was my Grandma and she passed away a couple years ago - oh and she was one of my absolute best people ever! I turned to that page and my Aunt had written an introduction explaining that she had found the poem in some old papers of Grandma and Grandpa's. I read the poem and you know it was exactly what I needed to read! She talked of feeling overwhelmed and bundling up her sorrows and trouble and taking them to God. To read her words and to hear her voice in my mind was really touching. I felt very much like God had allowed her to reach down and once again touch my life in a real and meaningful way. She has been such a guide in my life and as you can see she continues to be one still.

Well, I should get on with the laundry. I just took a break from the hospital so I could clean some clothes - I was afraid that they would evict me from the hospital if I didn't clean up a bit!

If only you were all in my head - scary thought! What I mean is that I often think of things that I would say that would interest everyone - but then I sit down and I forget. This log was a bit too long today any how - so maybe a short memory is a blessing.

Saturday, September 23, 2006

Its the little things


It has been quite a topsy turvy couple of days. I won't go into all the details. The long and short is that we are back fully on breast feeding with some bottle feeding as needed - mostly when
I need a break. Bronwyn doesn't have a lot of stamina so she eats a little often. So if I don't get a bit of help I just never sleep. But she is get stronger and is eating for slightly longer times - so hopefully she will start to sleep a bit longer too. She occasionally sleeps for a couple hours so that is a good sign. She hasn't gained weight yet - but the good news is she hasn't lost. And the big worry of fluids (not enough pee) seems to be less of an issue. She is passing urine and pooping quite well.

What a girl eh?

Lately it is the little things that are making my life so much nicer. The night before last I had a nurse who felt it was important to let Bronwyn lead the way and not wake her every three hours to eat whether she wanted to or not. And when the bolos feeds made her spit up because she had too much in her tummy - she discontinued them and did them less frequently. She even went and got a warm blanket to cover Bronwyn and me while I was feeding her. So nice!

Just when I thought a nurse couldn't be any nicer - well... Last night I was dreading the coming night as Bronwyn's new roommate was a little newborn with jaundice. So they had a bed with the bright lights - which was really bright. And every time they put him in for his tanning time he cried and cried and cried. Now of course I can't blame him - I wouldn't like it either - but I was thinking between Bronwyn's eating every hour and a really bright light and a crying neighbor - well I didn't expect to get any sleep at all. Then the nurse came in and asked if I'd like to be moved to a private room - well would I!! She said for the morning - but came back in a minute and said that they could move us right away. The same nurse also convinced me to let her bottle feed Bronwyn a couple times in the night. As a result I had about 6 hours uninterrupted sleep. What an amazing thing!

I am writing from the condo not the hospital and I have with me - Wes, Gavin and Bronwyn. Yes Bronwyn. She is out on a day pass. Pretty exciting eh?

Gavin is terrorizing his daddy and baby sister at the moment. He is trying to give her some ice. We have to take her back by 8pm ish. It is a nice way for me to start getting comfortable with having her at home full time. We have been warned that although she is doing well and they think she will fair well until the next surgery that she could drop dead with very little warning. We are being taught to look for early symptoms of heart failure and we will have an oxygen monitor and a weigh scale to bring home to monitor her daily. We also have about 6 medications that she has to be given several times daily. Do I think she will die before the next surgery? No! I believe that God will care for us and keep us all safe. But I need to be very aware of her status and be ready to react at any moment.

So while it is terrifying having her away from competent medical care, it feel so nice to have my family all together out of the hospital. Wow! What a feeling!

Thank you all for you continued prayers and thoughts we are so thankful for the great support we have received. There is a great swell of love and support that laps over our little family and I assure you we are greatly encouraged by it.

Love you all!

Thursday, September 21, 2006

A hard night

Well it is official I have been abandoned! Actually Mom and Dad took Gavin home to their house as I am now almost at the hospital full time. I just came home this evening to shower and take a nap.

Bronwyn is a great latcher but eating is very hard for her. She wears out so quickly. She just doesn't' have the stamina that other babies have. She wakes up often and have very brief feeding times. I am still so amazed at how well she is doing but I guess I realized by today that she is along way from being able to be fully dependent on breast feeding. They have continued the bolos feeds but at half the amount as she was throwing up with more. She is such a little trooper. I had a pretty anxious night as I knew she wasn't eating enough and she was hardly peeing.

The team is still very impressed with her progress and we haven't ruled out half breast feeding and half bottle. I would really like not to have to worry about tube feeding her at home. But it may be the best way. And if its the best way I will do it.

It is still a little early to tell. My big concern and anxiety at this point is that the feeding pattern that we establish now will be the feeding pattern that she has at home.

As for sleeping in the hospital - it was great. The other patient in the room was discharged earlier in the evening so I had the room to myself (and Bronwyn). Except that house cleaning came in about 1 am to clean. Fabulous! Super time to clean - with Javex no less.

I am already missing my little boy. But it has been great being at the hospital full time with Bronwyn. I am learning how to do her meds and they have taken her off all the monitors and only check her periodically. So I am getting more comfortable with her care.

Please pray for Quinn and his parents Kim and Ben as they have a meeting tomorrow to re-assess his treatment plan and decide what course of action to take.

Wednesday, September 20, 2006

The roller coaster

The last day and a half have been a bit of a whirlwind. I was holding Bronwyn yesterday thinking - Ho hum another day of waiting in Edmonton. When the nurse came in and told me they were changing her feeding. They wanted to give her the milk in a short period of time every two hours - to start simulating breast feeding. I knew that was the next step. Then she added that they wanted me to try breast feeding before each feed. Well - ok!

I came back later ready for a long session of trying to get her to nurse. They expect it to be a bit of challenge since she hasn't been able to nurse since she was born. So I sat down with her and she latched on immediately and started nursing. The nurses were amazed - so was I.

The second time I nursed her she spat up a lot of milk (they were in the process of tube feeding her). The nurse figured that she had nursed well and didn't need the extra tube feeds. They kept her on the periodic feeds through the night. When I got back this morning I nursed her and during her supplementary feed she spat up again. I was worried thinking they would stop the breast feeding. But instead they have decided to see how she does on breast feeding only. This surprised me greatly - as I never thought this would be an option for her. There are many different considerations created by her condition that complicate the nursing process. But they are going to see how she does. If she gains weight and doesn't retain to much fluid she will be able to continue on like a normal baby!

So I am now going to stay over night at the hospital and feed her on demand. I think they will try this for a couple days and see how she does. So Gavin is going to go to Langdon with Grandma and Grandpa to stay with them.

As thrilled as I am that they are giving her a chance to be breast feeding alone - well I can't even describe my level of dread at having to stay at the hospital through the night. It goes against fiber of my being! Oh, well I am a big girl and I'm sure I can do it. I am also not thrilled at not seeing Gavin for a few days.

Hopefully Calgary will let us come down early next week. So much for the quick move I had been excited about earlier. I am just hoping that we out of here before October 1.

So as Kim McConnell would say - The journey continues...

Monday, September 18, 2006

More thoughts


We had a good day today. Gavin woke up looking for his Daddy - tough for me to explain since he doesn't have any clue where home is and why Daddy would leave to go there. So I just tell him Daddy is at work. He really is a cute little man our Gavers! He was trying to get Bronwyn to hold his finger tonight. Fast forward 10 years and he will likely be still saying to her - "Pull my finger."

My Mom was watching Deal or No Deal tonight. I couldn't get over how much Howie Mandel looks like Malcolm McMillan!

They changed Bronwyn's feeding tube so that it deposits food in her stomach - it had been putting the food in her intestine. This is another step on the adjusting to food ladder. This evening she seemed to be tolerating it well. I don't know if they had given her any meds yet. So we just wait and see what tomorrow brings and hopefully she handles it well.

The parking attendants continue to be the friendliest ever. They have really taken us under their wings!

I am tired and if Bronwyn hadn't been facing a new step today I likely wouldn't have gone back tonight - but I am glad I did as she was doing well.

I ask now for prayers for Quinn and his family. The waiting for a heart to come is really trying and difficult. We have been praying that God will be merciful and spare them a long wait. I'd like to ask those of you who pray to keep praying for Quinn. Kim worded it so sweetly on her web page. She said that is we all get busy and pray maybe God would speed up the paperwork. So please pray!

Sunday, September 17, 2006

A mother's prayer

Dear Lord,

I pray that you will hold my children safe in your hands. Keep evil and harm far from them. Help them to know and love you as they grow. Give them hearts that will yearn for what is right and good.

Help me to learn. Help me learn to trust that you will care for them. Help me learn that your way is always the best way. Help me to learn to be the kind of mother that they need me to be.

Give us the strength as parents to do what is right. Give us the wisdom to be good examples to them. Give us the insight to love them in a way that shows them the nature of your love.

Strengthen their hearts. Give them courage to face any of the hardships that life may throw their way.

I pray, dear God, that the tears I cry in time of sadness will give way to tears of joy.

Above all I am thankful. So very thankful. You have blessed us with such wonderful children. They couldn't be more perfect. I can't even remember life before they arrived - it is a dim hazy memory. I know I was happy but it was a different type of happiness - a less complete happiness.

You have given us such great joy. I pray that you give us strength and patience when we need it most. Help us not only endure times of trial but help us see the good that surrounds us always.

We thank you for your care and love - In Jesus name - Amen

The pictures



Don't know why this didn't work last night - but here are a couple pictures from yesterday.

Saturday, September 16, 2006

I think it's Saturday?

I tell ya - it is so hard to tell what day it is. In fact I have a hard time figuring out if something occurred yesterday or earlier today. So much of what we do is just the same every day. I know it is the weekend because Wes is here. We have ups and downs and set backs and little triumphs - but at this stage they aren't big dramatic things like surgeries and breathing tubes. They are however very important and many are equally life altering for Bronwyn. But there is definitely a sameness about the days. I guess I should thank God for that as big changes and real drama would not mean progress at this stage.

We met Tom and the kids at the hospital today. It was the first time Josh & Kennedy could see Bronwyn as they were to young to go into the NICU. Jared has seen her a couple times. They all got to hold her. They were so sweet with her - I am so proud of those kids! Bronwyn will get a chance to meet her other cousins - Robbie & Carissa when we get to Calgary - although I doubt I will let them hold her.

Wes had some quality time with his girl. I truly believe that Bronwyn has a very similar disposition to her Dad. She is very observant and alert, but very placid and calm. The nurses all like to work with her because she is such a quiet and sweet baby.

Gavin has also enjoyed having Daddy home. He has taken to calling his Grandma "Betty" - I think its from hearing Grandpa talk with Mom. He calls his Grandpa "Pops." He gets up in the morning and starts saying "Pops? Pops?" I have to restrain him from waking up his Grandparents.

I must confess that I am getting extremely anxious to get home. Bronwyn is stable enough to move and Calgary could work on the feeding issues that we are dealing with now. But I am trying to be patient. Those of you who know me will understand that this is likely the biggest test that I have been through. I am not good at waiting. I keep reminding myself that if we are still here there is a good reason. I believe that we will be moved when it is the best thing for Bronwyn - God will make sure of that. This is likely a test of my ability to trust God and wait for things to happen in his time. This is just not one of my strengths!!

I wasn't going to do a post tonight - but I had a couple nice picts to put up (but I can't post them for some reason) - so I thought I'd blab on a bit. That should be enough for now.

Friday, September 15, 2006

More visitors


We had a busy day today and for the first time in a long time it wasn't Bronwyn who made it busy. Wes drove up this morning and just after he arrived Hope & Kids and Melanie and Cadence arrived. They drove up just to come see us! How nice eh? Cadence who is only 2 months old did very well I guess. I have to confess I get such a bang out of Dawson - Hope and Darcy's youngest. He is so much fun. He apparently has no fear - doesn't mind falling over a fair bit and will by the looks of it put almost anything in his mouth! And he's only 15 years old - JUST Kidding - he's 10 months.

Wes and I went over with Hope & Mel (and kids) to the hospital to show off our sweet girl. She is doing well today - they have increased her feeds again. She is apparently doing well and gaining weight well so they want to give her as much as she will tolerate. She is basically back up to her birth weight - a great milestone. It seems shocking to be pleased to see your child reach her birth weight a month after she was born - but she has been through an awful lot and it is a very good sign.

I am so happy to have Wes back for the weekend. We are really hoping to be returning home early next week - but I was really hoping to be returning the early part of last week! So we will just wait and see. Gavin was also really happy to see his Dad. He is sitting on my lap at the moment (fun typing) looking at pictures of his baby sister and our family.

Well - this is getting harder to do with the little man on my lap - so this is all for now.

Thursday, September 14, 2006

Uneventful day

Today was just another day. It is amazing how routine life can become even in such a strange environment (I mean the hospital stuff not Edmonton - although...).

I had quite a few interesting experiences today and a couple nice surprises. I found out the blood clot that was in Bronwyn's leg is now gone - so I won't have to learn how to give her the blood thinner to treat it. It was the only medication that couldn't be given orally so I am glad not to have to do this.

While at the hospital I had a quick visit from Shirley and a bit later from Diesta and Laurel McMillan - they were up for Laurel's check up and popped in to see me (sorry if I misspelled the names). It was so nice to see them.

Gavin is doing great - his favourite thing to do (other than terrorizing his Grandparents) is to colour on the furniture. Apparently the wood finish on the furniture is a bit boring. His Grandma says its because he is a natural born artist. I would just like to look at something in the house without seeing crayon on it! He went to the park today even though it was cold and wet. He loves wearing his rubber boots and playing in puddles.

This evening Mom and I went to the hospital to see Bronwyn and took our neighbor - Selena. She is a little lady who is originally from Poland. She collects all sorts of nicnacs and stuff and she also collects bottles and putzes around the condo complex a lot. She is very friendly and has been very interested in Bronwyn and how she is doing. She enjoyed visiting our girl - I think. We visited as we drove over and we found out that she has a PHD in Chemistry. She came to Canada to do Research at the University of Lethbridge and then moved to the U of A. She is quite an interesting person really. We have pretty interesting neighbors here - they have been very good to us.

I was thinking today it might be fun to share with those of you who are reading our updates who else is keeping up. I have been absolutely amazed at how many people all over the world are reading about our adventures here. It has given me a bit of stage fright - but it has been an amazing support. We have all sorts of friends from Calgary - Church friends, work friends, old friends, family, new friends etc. There are friends and family in Edmonton, Camrose, Estevan, Saskatoon, Vancouver and Vancouver Island, Winnipeg, Carmen, Thunderbay, New York, Philadelphia, Florida, England, Botswana, Zimbabwe and all sort of places in between.

I am sure that many of you will never know how much the support - blog comments, emails, phone calls, and messages through family - have helped. I pray that most of you will never be in a situation like this but if you have you understand how the love and prayers of caring friends can carry you through some dark times.

Wednesday, September 13, 2006

Like mother - like daughter


Today I went to see my lovely little girl - leaving my lovely little boy at home with his Grandparents. Gavin has so much fun with his Grandma - she is just the best! When I got to the hospital all seemed well - Bronwyn was going to be moved to another room. The room she was in yesterday was an intermediate room - a bit more monitoring etc. It is a segway between the NICU and a normal hospital room.

I was holding Bronwyn and she pulled out her feeding tube. She was so fast! I really couldn't be too upset since I had set a bad example for her yesterday. The nurse had to completely pull it out as it was too far out to rescue. Once she removed it Bronwyn smiled and looked a bit smug as she snuggled in and went back to sleep. So this afternoon they had to insert a new tube.

She was resting well when I went last night - she is doing well with her food so far.

I was informed this morning that we wont be returning to Calgary until Monday at the soonest. The Stollery is ready to send us but the Children's is in the middle of their move and they aren't ready to receive us. So we will wait here and continue to watch Bronwyn's progress.

I spent some time talking to the nurse practicioner for the Cardiac ward about what we can expect when we get Bronwyn home. Like everything else it is very dependent on how Bronwyn does and what she requires individually. I was able to at least construct a fairly realistic picture of what life will look like though. How difficult it will be is up to Bronwyn I guess. I have a better idea of the care aspect - what medications she will be on and what some of the key health issues will be. As for how she will be fed and how much activity she can endure that is all up in the air.

For now things are going well and that is all I need to know. I will set the worries about tomorrow aside so they can be dealt with tomorrow.

Tuesday, September 12, 2006

A small move



I arrived today at the NICU to discover that Bronwyn was being moved upstairs to the Cardiac ward. She got settled in to her new location and is doing very well. There has been a bit of a complication. OK. Now before I tell this story I need to explain something first.

Before I left work I promised some of my co-workers that I would behave myself while in the hospital. Now in my defense I am not actually in the hospital now - I am just a visitor!

Alright - so while they were doing the paper work for her transfer the nurse asked me to hold her so that she would stay calm so she could get everything organized. So I picked her up and sat down in a chair. I didn't notice that her IV lines had been taped to the edge of the bed so they wouldn't pull. A few minutes later I realized that her IV (it is actually called a pick line) was coming out of her head. I told the nurse and well... Oops! I thought they would have to put another one in - but thankfully this morning they had just changed her prescriptions to be all oral and not Interveinous. The only thing going in the IV was her fluids and fats. They have been slowly building up her oral feeds while dropping the other fluids.

They decided they would speed up the process of oral feeds and see if she tolerates it before they reinstall an IV.

Tonight she was vomiting a bit - so I hope that is just a temporary thing. If it is a problem with the feeds then they can put in a temporary IV and start her on fluids again. I feel bad because I caused the issue! Oh, well my kids are going to have to get used to the fact that their mother is a clutz. I am sure they will love me anyway.

Gavin is doing well. He just loves his Grandparents. You can see in the pictures that Bronwyn is working on her relationship with her Grandparents also. He is upstairs in the play pen talking away at the moment. He was asleep but now he's not.

They are still saying that they hope we will be moved to Calgary by the end of the week. But we are still waiting and watching Bronwyn continue to recover.

Monday, September 11, 2006

Some pictures



I don't have much to report today. They did an x-ray of Bronwyn's chest this morning and it came back negative for fluid - which is great news. We are all doing fine. Just plugging along. Waiting for word on when we will be transferred home.

I am tired tonight but feeling quite happy as everyone seems to be doing well - I do miss my husband though. It was so wonderful that he could be here so long.

Good night.

Sunday, September 10, 2006

Anticipation


It has been so hard for me not to get quite excited about being able to return home. I am working very hard at not getting my hopes up to high because everything can change overnight - but...

My girl is looking better and better - her cheeks are filling out and she actually looks like a baby should - a little plump in the face. When I look at her now it is so hard to believe that she has something so seriously wrong. They have corrected the main problem but she is still not out of the woods and her heart isn't going to function strongly until the completion of the third surgery. But having said that she is so much better than she was and it just warms my heart. She is a real sweet girl. She was a bit fussy tonight - her Grandma was holding her and she was showing off her crying for Grandma.

The have been steadily increasing the amount of breast milk she is getting and at the same time reducing the IV fluids. The plan is to get her slowly completely on oral food rather than the IV. Every baby step forward is a great milestone for us.

Gavin was just soooo excited today when he discovered that his Grandparents had arrived during his nap. "Mama, Pop" He was saying a very excited way. He immediately started playing hide and seek with Grandma - he has a great memory for that type of thing. Does he remember that he isn't supposed to play with the plug-ins or the vcr? NO! But he is two and he has done really well.

Wes has returned to Calgary as he is going back to work tomorrow. Wes would often bring Gavin home in the afternoon while I stayed with Bronwyn and he would take a nap at the same time as Gavs. So we figured he should tell his boss that he has grown accustom to afternoon naps and would be in his truck snoozing between 2 and 3 pm. Ha.

Well I am praying that my girl keeps doing well and that a bed opens in Calgary soon so we can get our family back to home base. I didn't realize just how much I miss Calgary and all our friends and family there until I realized that returning soon might be a reality.

Good night and God Bless.

Saturday, September 09, 2006

Not much news



I don't have much to report today. We are still just waiting to see how Bronwyn does with her feeds. She was still doing quite well - so we are feeling pretty optimistic but we will be happier when we are given word that she is out of the woods (at least cleared on the fluid issue).

We have been told that we will likely be transferred back to Calgary mid next week. Don't hold me to this though. This is completely dependent on beds and Bronwyn's stability.

I wanted to share a couple pictures I took today. I put Gavin's finger in Bronwyn's hand. He was pretty pleased with that - for a short time. He tried to pull his finger back but she had a fairly strong grip on it. He then looked at me and pointed at his finger and said "Off, off".

We had a super nice visit with Andrea and Mike Reid this evening. They came up from Calgary to see us. It was just great to get to visit with close friends. They seemed pretty impressed with our girl (and our son too). Andrea is the first person beside Wes and me to hold Bronwyn (well except the hospital staff).

I am trying not to get to excited but I am thrilled at the idea that we could be home by this time next week! I am so excited because I was sure that I would have to miss the shower for Melanie and her new baby Cadence - but who knows I may make it.

Friday, September 08, 2006

A good day

We have had quite a good day. Bronwyn is starting to look a lot less lean than she was a few days ago. They have started feeding her breast milk again. So now we just wait and see if the fluid around her lungs builds up again or if it has cleared up all together. The doctors are very pleased with her progress. I spent a couple hours holding her this afternoon - she was working on giving me a smile. We enjoyed our chat today. I told her all about her family - I told her about my Grandmothers - who were both tough gals who went through a great deal in their lives and handled it all in unique ways. She enjoyed that story.

She is finally able to wear clothes! They have taken off all the IVs that were in her legs or arms so now they can put clothing on her. Yep - our girl was naked except her diaper for the first 3 weeks of her life. Our son would love to go through life in just a diaper - but alas it is less acceptable for an almost 2 year old.

I felt very somber on my drive home this evening. I ran into Melissa's Mom in the hallway. I saw her the other day and the Drs. Were having some issues managing the thinness/clotting of her blood. Tonight she was being comforted by a friend and had been crying. I guess Melissa threw-up her feeding tube. It is amazing how a quick turn of events can change a mother's perspective. I felt heart sick for her and I pray that Melissa gets a heart soon. The problem with waiting for a heart is that they have to keep the body well enough that it will manage and continue to thrive once they replace the heart.

Quinn had a procedure yesterday to remove a blockage that was reducing his oxygen saturations to his body. I ran into his Mom, Kim, today and he was doing much better today. For now he is stable again. Kim is managing so well - the waiting is such a horrible thing and she is showing incredible pluck with every turn of events.

One of the things I was worried about when we first arrived at the Stollery was that there may be some friction between parents if their children were recuperating at different rates. I was concerned that there would be a natural jealousy that would cause parents to resent others if their child was getting better faster. I think I was even worried about myself. But this isn't the case - I quickly realized that this is a very different place (or at least the people I have rubbed shoulders with are different). Others are genuinely happy for you when your child does well and they are equally worried for you when your child takes a turn for the worse. I am so happy when I hear good news about another baby or child. As for the bad news - trust me - once you have gone through this type of anxiety you feel keenly for any other parent who is in a similar or worse situation. The support we have received from other parents has been great!

Enough introspection. This has been a bit somber I think.

So tonight my prayer request is that both Quinn & Melissa will receive hearts very soon and that Bronwyn will do well on with the feeding.

Wednesday, September 06, 2006

How we deal with Gavin



Lock 'em up!!

As I write this Gavin is running around the living room. You can get a kid to bed but it doesn't mean that you can keep him there!

Bronwyn had a bad night last night - she didn't get much sleep and she was a bit upset. They have been changing her meds a bit - so it was likely a result of that. They have reduced her morphine - apparently she likes her morphine - who can blame her. She slept a lot today and was much better by this evening. So we are just praying she has a quite night. I was very heartened today after having a chat with the dietician who is in charge of Bronwyn's inputs. They have upped her caloric intake substantially. She has been looking very lean lately - this is why it was so upsetting to me that they have delayed feeding her. The dietician is confident that she will start gaining weight and isn't too worried about her weight at this point - although she is aware it is an issue.

The fluid around her lung was looking good on this morning's x-ray. They may try feeding her again tomorrow. Best case this goes well, worst case they discover what is causing the fluid.

Wes was carrying Gavin as we left the NICU earlier this afternoon. As we walked through the ward Gavin was saying "Bye" to all the nurses and blowing kisses.

Brownyn was smiling in her sleep while I was holding her this evening. One of the nurses told me that last night a staff member walked by and said "Oh, isn't she just gorgeous", and Bronwyn broke into a big smile. She knows she's cute! We might be in trouble a few years down the road.

Quick update on baby Quinn. They are watching him closely - concerned about his overall health. We keep praying that he will get a heart soon - the sooner he gets one the better his recovery will be.

Thanks again for all the encouragement, comments, notes and well plain old love you are sending our way. We have a new appreciation for our friends and family. This experience has taught us the value of community. So thanks again!

Tuesday, September 05, 2006

On the upside

We arrived at the hospital this morning to find out that there had been a bit more fluid accumulation around Bronwyn's lung on the x-ray this morning. So they are holding her food for a day or two more to see if it clears up. They are not 100% sure what is causing it - but she is extremely stable so they are happy for now.

In fact we were told today that they are discussing moving her to Calgary - the surgeon has approved the move so we will likely be coming back to Calgary fairly soon. They don't know when it will be - it could be anytime. This has blown us away. We were told to expect to be here until the end of September - and that would be a good recovery. So we are just shocked that they are considering moving her so soon. She is after all only 3 weeks old today. And it hasn't even been 2 weeks since her surgery.

I was concerned that they haven't resolved this fluid complication yet and how that would be handled if she was moved. I have been assured that this is a common enough side effect from all types of surgeries that the NICU in Calgary will be well aware of how to treat it.

I held my girl for about an hour this evening (her Dad got to hold her for quite a long time earlier - while I chased Gavin around the hospital). She lay in my arms with her little hand in a loose fist while pressed up against her chin. She looked like she was in deep thought - but she was sleeping. It was a very precious moment for me. The very idea that we might be able to return to Calgary soon has really bolstered my spirits - not that life here has been bad - it is just so much nicer to be at home.

As I drove back to the condo there was a beautiful orange moon in the sky half masked by the clouds. I know God has been with us and has kept our girl (and the rest of us) safe from harm. But as I drove home I really felt truly blessed and again more confident in His control over everything in this world. It is hard as a Mom not to be emotionally effected by all the ups and downs - but tonight I am trying to focus on all that God has done for us. The nurse looking after Bronwyn last night and tonight told me that she was shocked when she looked through her chart. She was searching to see what complications and issues she had and was surprised by how little there was in the chart. She has sailed through many of the issues that they expect after this type of surgery.

Are we out of the woods? No. Are we optimistic and gosh darn proud of our girl? YEAH.

We are also extremely proud of our little Gavers too. We often have nursing staff and other staff telling us how cute he is and how well behaved he is.

Monday, September 04, 2006

Ups and Downs


This is a picture of Gavin playing on one of the computers at the hospital. Shortly after he started playing on it the computer stopped functioning - who knows why! He has been a very good and patient boy with all this hospital stuff.

We had quite a turbulent day today. When we arrived at the hospital there was a doctor there ready to do a procedure on Bronwyn. We left them to do what they needed to do and when we returned they were still busy with her. Her main IV line had come out during the procedure so they needed to redo that. This took quite a long time and another doctor had to come and help him. I was informed that our daughter is very lucky as the doctor that came to assist is super good at inserting IVs and he was supposed to be on vacation but popped in for an hour or so. We were just lucky he was there to help out.

They resolved all their issues eventually and the test results returned with fairly good news. It seems for now that what they were concerned about isn't happening to Bronwyn. Good news. I called in this evening and they had to do a blood transfusion - the nurse figured it may be a bi-product of the activity today. I hope this is the case. Any how, we will wait to see what the morning brings - hopefully her x-rays are positive.

I was quite upset today but left with more hope. They are monitoring her condition so carefully and are very quick to react to any symptoms that occur. This is great to know and I am pleased that they have a course of action for the all the changes in her status. They are looking after my baby very well. While this is a comfort it is still a real roller coaster for me.

We are happy for now and I am hopeful tomorrow's news will show that Bronwyn is back on the road to recovery.

Sunday, September 03, 2006

Small set backs

Today for the first time in a long time we got some bad news when we visited Bronwyn at the hospital. They have taken her off the breast milk. There is a complication that occurs from the surgery that isn't discovered until they start to feed the babies breast milk. It is a bit complicated but the long and short is there is fluids in her chest cavity near her lung. They have stopped the breast milk and will wait for a day or two and check the chest cavity to see if the fluids are decreasing. When they start to see a decrease they will decide whether or not to try the breast milk again and see if the fluid builds up again - if it doesn't we are good to go for feeding (or the next issue arises!) but if not then well we have to figure out what the next step is from there.

I have long been aware that after the surgery is when the real work would start. This news is not horrible and they are on top of the situation. It is just amazing how fragile my sense of optimism and security can be some days. I get one piece of bad news and my world starts to crumble. This is when my husband is my best gift. He is great about staying calm and helping me approach the situation calmly. When you first get information it is hard to know what to take seriously and what is just a complication. So we ask a lot of questions and try to get a sense of where this is on the panic scale. We think at this point that this one is not high on this scale - but if the situation goes untreated it could be.

I am disappointed that we have had a set back as it will affect the schedule. Why should I expect this to go on a schedule? I've never been able to get things at work to stick to a schedule and that is just advertising!

Gavin is not 100% but he isn't as bad as I thought he might be last night at one point. He is refusing to go to bed right now the little monster.

Good night and God bless you all.

Saturday, September 02, 2006

More Progress



I wasn't going to post a blog today because I didn't expect to have any news to report. But when we arrived at the hospital earlier in the day the nurse told us that the doctor's were discussing starting Bronwyn on breast milk today. We thought we'd have to wait for several days to get to this stage. When we went again later in the day she was already started on the breast milk. It is being fed to her through a tube in her nose to her stomach - and for now it is a very small amount.

So now we are hoping that she does well with this stage. We are thrilled that she is doing so well and she seems to be getting this done when she needs them. She wants food so they start with food.

Gavin is actually not feeling well this evening. He had a bit of a fever but it came down when we gave him some motrin. I am hoping it is nothing major and that he is just perking tomorrow.

Tomorrow we should hopefully find out how she is tolerating food.

I just wanted to mention that my best friend Alison had a baby boy the night before last. They have named his Austin (I believe - I called her mom for info and haven't actually talked to Ali). So congrats to Darren, Ali & Aleya.

Friday, September 01, 2006

Daddy's turn


Today Daddy held Bronwyn. He held her for 20 minutes or so. We then had to leave the PICU as they were doing a procedure on someone else's child. The unit was closed for an hour or so and shortly after that they moved Bronwyn to the NICU. This is a big step for us as this means that she is stable and not critical enough to stay in the PICU.

What a great feeling to have Wes holding our daughter! We had about a half an hour after she was born where we were able to hold her and we haven't been able to hold her since. This was a big step for both of us. Bronwyn loves being held - she snuggles in and goes to sleep. She was very content in her Daddy's arms. Wow that warmed her mother's heart.

As for our other off-spring, Master Davis, he is all about Daddy these days. Mommy is SO NOT COOL! But he still isn't above falling asleep in his Mommy's arms if need be. He came in with Wes the other day when I was holding Bronwyn - he was quite confused by that and kept pointing at the bed and saying Baby. I think he felt that she should be where she normally was.

We will see what tomorrow holds for our girl - hopefully she just continues to improve. I may not do daily posts soon if her progress is slow but steady. I don't want to go overboard with this Blog thing. Of course I could fill pages of Gavin's antics - but he'd likely be embarrassed by all the attention (not likely).

Although we have been facing many struggles lately I wouldn't trade it for the world. I am so happy with my family. God has blessed my life so richly. Bronwyn absolutely belongs with us and we couldn't be happier with her and her older brother. The future holds many joys for both my children and Wes and I get to sit back and enjoy the ride.

Oh, I almost forgot - we have an update on Quinn. There was another baby that was ahead of Quinn in the line for getting a heart. He got a heart yesterday, I spoke to his elated Grandpa this morning. So now Quinn is at the top of the list. So keep praying for a heart for him.

Thursday, August 31, 2006

Mom and Girl time



I got to hold my girl today.

It was just so great to hold her. They took out her oxygen tube today. She has a small amount of oxygen available in a nose tube but she is mainly breathing room air. They have also taken her off her pain meds and are starting to change and cut back on her other inputs as well. She is doing so great. Her colour is good and she is sleeping and waking well. Her throat is still quite swollen and sore (from the oxygen tube). She tries to cry but can't get her vocal cords to make much noise - but that will come in the next couple days.

The next stage is introducing food. They haven't said when they will start that but we hope that Bronwyn faces that with as much courage and success as she has to this point.

Gavin is doing well also - he has been very patient with us. He was totally thrilled today though as his Grandparent have come up again for the weekend.

We are thrilled with how things are going. Each positive step Bronwyn takes helps our optimism and our spirits.