Friday, September 08, 2006
A good day
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
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
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.
Wednesday, August 30, 2006
Short note
Melissa, the teenager who is waiting for a heart, had an operation today to install a Berlin heart. This is an external pumping machine that will help her heart continue to operate until a heart becomes available. This is good news as it should prevent complications that occur when her heart stops. The surgery went well and this should help her stay in relative good health until her transplant. I don't have any news on baby Quinn for now.
Tomorrow could be a big day for Bronwyn so I will report more later.
Tuesday, August 29, 2006
Another day

Hello all, we are doing well. This picture was taken a week ago last Saturday. Gavin was able to spend a bit of quality time with his big cousins - Jared, Josh & Kennedy. He enjoyed them so much.
Bronwyn is doing quite well still. We are waiting for them to start weaning her off her meds and supports. They didn't do much today with her - but let her rest and change a few of her medications. Did you know that there are doctors that specialize in blood clots? Dr. of Thrombosis I think - imagine that!
I had a pretty interesting day. We spent some time with Bronwyn - again Gavin got to see his sister for a short time. It was short as he wanted to start pulling on tubes and pressing buttons. He was removed fairly quickly at that point. Wes brought Gavin home after lunch for his nap. I stayed at the hospital.
Several days ago Shirley Perry had asked me to sing with her at a small ceremony for a patient in the oncology ward. This young teen girl - Kayla - is having her leg amputated tomorrow. They wanted to have a "burial" service. I agreed to sing but was a bit nervous of what the service would entail and what they would do. It ended up being an opportunity to show support for this young girl and it gave her a chance to talk about her feelings of gratitude and for her to thank and share with all her family, friends and the staff at the Stollery.
I was extremely touched and moved by the service. Kayla is facing a life changing event with extreme bravery. For a young girl to loose a leg is a very difficult thing - of course it is the course of action that could very well save her young life. She will just need to learn how to live this new life without one of her legs.
When she spoke most of her thoughts were of hope and thankfulness. She expressed how she has learned through her struggles just how many loving people are in the world.
If I were prone to feeling sorry for myself, the words this young brave girl spoke today would have certainly been a wake up call. No one asks for this type of a change in their life. We just need to deal with what we are facing each day. I was so pleased that I agreed to sing with Shirley - I truly believe that it did more for me and my spirit than it did Kayla's.
We are doing well - I am tired tonight. I just sometimes feel weary. My son is a great antidote for that though - he is such a goofus! He just finds a million little ways to make us laugh. He is a bit like his uncle Jon - he thinks he is so funny. Gavin will do something and then he'll laugh - he can't help himself.
Well - God Bless & good night.
Monday, August 28, 2006
Another success
Each hurdle we get over successfully I breath a wee bit easier. I still feel tense and nervous when the phone rings - I always worry it will be the hospital calling us with bad news. This feeling is slowly starting to subside. I am sure part of me will always be a bit anxious for our little girl.
Gavin is doing well - he has decided that he doesn't want to hold our hand when he walks. His strategy of avoiding this is to go limp and lay on the ground. If you can picture us leaving the hospital and walking across the pavement of the emergency entrance - Wes holding the hand of a child who is hanging limply and is being dragged across the pavement! Pretty picture isn't it!
He really has been great - he has been at the hospital with us for the last three days and he has been very patient and tolerant (for a 2 year old).
I'd like to ask that you keep in your thoughts and prayers baby Quinn - they are waiting for a heart - infant hearts are extremely hard to come by. His parents found out that they are second on the list - there is another baby at the Stollery who has been waiting longer. I have also met the mom of a patient in the PICU who is also waiting for a heart. She is 14 and can receive an adult heart so there are higher odds that she will get a heart. But she is very sick and the sooner she receives a heart the better. Her name is Melissa.
There are an amazing number of stories - everyone at the Stollery has a different issue and stress with which they are coping. We are among many. In fact I am starting to feel as though our situation is much more positive than most and that there are many who are dealing with far more than we are. Of course if Bronwyn wasn't doing so well I would likely not feel this way. We have so much to be thankful for - God has been so good to us. We are just taking each moment for what it brings and preparing ourselves the best we can for each new step in this process.
Again the support and encouragement that we receive from all of our friends and family who are reading our blog is amazing. I don't think you (and I mean you as you read this) can have any idea how you are impacting our family. It gives us courage and hope to know that so many people care for our little family. May God bless all of you and bring you rich blessings in return for the great kindness you have shown us.
Sunday, August 27, 2006
Closing day tomorrow...
She is such a lovely little girl - of course I have to say that I am her mother!
We took Gavin in to see her today - briefly. I have this absolute fear of having him too comfortable in the unit. He loves buttons and lights that flash and heaven help me what a mess he could get into with all the equipment they have in the PICU!!
One thing I have intended to mention but haven't yet is the great comfort and support we have been receiving from Shirley Perry. We knew each other long ago in Calgary when I was in University. Shirley has been working at the Stollery for a long time - she is a nurse practioner in their oncology ward. She frequently pops in to check on Bronwyn and she knows EVERYONE! Before the surgery on Thursday she let us know that she was friends with both the surgeon and the anethetist (who knows how to spell that one). What a comfort that has been.
She even popped up today to see Bronwyn - unfortunately we missed her as we had just gone out to grab a bite to eat.
Gavin has just joined me - he is going to help me with this entry! What fun for Mommy.
So another day another hurdle - each day takes us closer to recovery. No matter what we have to go through and how tough it may be too watch I am completely confident that she is absolutely worth it. Our little girl is a keeper and that is exactly what we intend to do - KEEP HER!
Friday, August 25, 2006
Going strong...

I called early this morning before the shift change to check with Bronwyn's night nurse to see how she had faired through the night. In the words of the nurse - She is a STAR! Well you don't need to tell me. She opened her eyes and looked drowsily around this afternoon when we were there. I was so excited by that - I started to cry. I'll likely be a mess when I actually get to hold her.
Many of you have let us know how much you are enjoying these updates on the blog. Well there is a side effect of this popularity. My mother has started calling me a blogger-mouth. Clever eh? So those of you who are worried about fact that there is nothing normal about our life right now - don't worry - normal is not something I have been exposed too.
We are so pleased with Bronwyn's progress - she has done exceptionally well. She is truly exceeding the expectations of those who are caring for her. For those of you who are praying and expecting God to work in our life - I want you to know that He is not just helping heal our daughter He is going above and beyond. Bronwyn had a slight infection before her surgery - they had started her on antibiotics even though they hadn't identified the infection. The results came back last night and it was a minor bladder infection. The doctor who was attending last night is a specialist in infectious diseases. Any doctor could have made the changes to her medication but God provided a specialist in that field. A bit above and beyond - don't you think.
It is 11:20 pm as I write this and Gavin is in his bed yelling for his Grandma. He is refusing to sleep tonight - apparently his parent's aren't listening so he is calling for his more sympathetic grandma.
Again thank you all for your support and love. Be comforted in our optimism and know that we are doing well. The better our daughter does the better we do.
Now Gavin is calling for Grandpa!
What a kid.
Thursday, August 24, 2006
Surgery Update
Once again we are so incredibly thrilled with the quality of the care at the Stollery. The doctors, nurses and technicians have all been so great. They are so careful to explain everything to us and are so careful of our feelings and they are managing our expectations so well.
Also we are so thankful for all the prayers. Bronwyn is so far doing very well and I am quite sure that is because of all the prayer. God has been so good to us through this process. We feel so richly blessed. I am confident that he will continue to care for us and use the gifts of all the medical staff to see that our daughter has the best chance possible.
Finally I am so proud of my sweet girl. She has gone through something quite large for a little one and she had to do it all alone. She is showing herself to be resilient and strong. We just pray that God continues to give her strength and determination.
We will keep you all posted - thanks for your prayers and love.
Wednesday, August 23, 2006
Tomorrow is the big day
On the home front we have had an interesting day or so. It is a long story but our power was cut off (a bit of a mix up) any way we have been without power for the last 30 hours. Our neighbor who is on the condo board suggested we plug an extension cord into the hall plug in - so we had light and I was able to get my breast pump working - thank heavens.
By the way (those of you who are squeamish - don't read this) - my son has a fascination with the breast pump. He runs into the bedroom when I am pumping in the morning yelling - I pump, I pump. It is a very interesting machine to a near two year old.
Last week when Joan was up visiting - Mom, Joan and I had been to see Bronwyn - on the return to the car I was feeling a bit emotional and was crying. I guess my eyes were red. I pulled up to the pay booth and the girl in the booth asked me what was wrong - I just stared blankly at her and said "Sorry?" - she said your eyes they are red. I said - Yes I have been crying. She asked why. I said my daughter is in the hospital. She asked if she was sick and I said yes. Well long story short she waved me through and didn't make me pay. It was quite a funny experience. Last night the same gal was at the window. She remembered me and asked me how my daughter was. I told her she was having surgery Thursday. She said "She'll do well - you just need to pray." I guess I am telling this story to let you all know that we have been getting support from all sorts of places. Even the parking attendants care about our daughter's success.
We know that so many of you will be thinking of us tomorrow. We need you to all know how much we appreciate your support and love. We are going to face tomorrow with as much bravery as we can muster and we are encouraged and heartened by all the well wishes.
Even our neighbors here at the condo are doing there best to take care of us.
We love you all and will do our best to keep you updated on our sweet girls progress.
Monday, August 21, 2006
A bit more info

We were supposed to meet with the surgeon tomorrow but we were there when he was doing rounds today and so he met with us today. He explained the surgery what needs to be done and what Bronwyn's issues going into the surgery are. There is one aspect of the surgery that is less than ideal going in. He (and by he I mean Dr. Rebeyka) is confident that it wont be a big issue but it is something to be considered and is a complication. The aorta vein leading into the heart is a little smaller than would be ideal for the surgery. We are not alarmed at this as the doctor seems confident that it wont be an issue. These doctor's must take courses on how to contain and manage the fears of parents.
Bronwyn is still in stable condition and looks in good shape for the surgery on Thursday. Her surgery will begin at 7 am and should take about 4 - 5 hours. The first 24 hours after the surgery are the most critical and she will be monitored very carefully during this time.
On the home front Gavin is doing well - he has a bit of a cold so he hasn't been able to go in and see his sister. We had a lovely visit today from Hope and the kids which was a real joy. Gavin is super excited at the moment as his Grandparents have just returned from a weekend back in Calgary.
I am off to the hospital again here - so I will cut it short.
God Bless you all.
Saturday, August 19, 2006
Holding Steady
We had a little birthday celebration for me the other night. Gavin didn't think it was necessary to wait until we actually sang happy birthday. He didn't care much for the cake but he loved the strawberries!! He definitely keeps us all hoping.
I wanted to ask those of our friends who pray to ad a little boy named Quinn to your prayer list. Him Mom and I were admitted to the hospital at the same time and discovered that we were both there to be induced and both our babies have the same condition. There little guy arrived earlier than Bronwyn. He is also in stable condition at the moment - but they were informed that he is not a good candidate for the Norwood surgery because he also has a problem on the right side of his heart (the tricuspid valve - I believe). He has been put on a transplant list. We ask that you pray that they will receive a heart that is compatible.
We have been surrounded by love and encouragement. I have even made a new friend in Edmonton - I started chatting to a gal named Sarah at the park on day before Bronwyn was born. She has a daughter Gavin's age. Last week she brought over a lasagna and muffins! How sweet was that eh? She is going to come on Monday night to see our lovely girl.
Again - we are so thankful for all of you and the encouraging notes - they mean more to us than you can imagine. We feel quite cut off from the world here - there is very little that is normal about what we are doing on a daily basis. The most normal thing is the daily hunt for a parking spot!
We love you all - God bless and keep you!
Wednesday, August 16, 2006
Picts of our girl


We figured out a way to get the photos onto this computer - whew! So here are a couple snaps of our lovely new girl. She is doing well - mostly stable. They are keeping her very still and we haven't been able to hold her since she was born - which is hard - but it is in her best interest. Mommy is finding that pretty hard - but I'll get through.
Wes has been an absolute rock and support and Gavin is still just the light of our lives.
We are doing well and are very proud of our sweet little fighter!! She is going to do great - it will be hard to watch but I am confident that she will come through with great success.
We appreciate all your comments and support - you have no idea how much you all mean to us.
Bronwyn is here
Tough times ahead - but for now we are thrilled because she is safe and here and doing very well. She looks quite a bit like Gavin did when he was born - maybe a bit darker hair. We have pictures but again I have to figure out how to get them on this computer.
Gavin is running non stop - it takes several adults to manage him.
Saturday, August 12, 2006
Back on line
NO baby yet - but I have been having contractions today - so I think we'll be headed to the hospital some time today or early tomorrow. Wes joined us on Wednesday - boy was I glad to have him here - that was tough being apart at a time like this.
Mom and Dad have been fabulous - they have been busy outfitting the little condo here - many trips to Ikea - followed by much swearing during assembly.
I have checked all your comments on our blog and we really appreciate all the support. I want all of you to know how much your thoughts and prayers mean to us. We are headed into scary territory for us - so thanks again!!
We love you all and your thoughts are helping us proceed bravely and with confidence.