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.

Short note

Just a short update - Bronwyn is still holding strong. I spent sometime with her this evening and I was struck by the fact that my stability and happiness has over the last few weeks been as fragile or strong as a 7 & 1/2 lb. baby girl! She is doing well - so I am doing well. They are planning on taking the breathing tube out tomorrow - that will be a big step. I am excited to see how she does tomorrow. She is ready to be sent back to the NICU but they are short on beds there - so she is just hanging in the PICU until they have some room.

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.

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.

Another success

They closed Bronwyn's sternum today - and the operation went well and she has been doing well since. They are keeping her sedated for now as they want her to have a day of good rest. Tomorrow they will start weaning her off her medications and her supports. Hopefully she will handle that well. She has been just a super good patient. The nurse tonight told me that when she was assigned Bronwyn the other nurses were all jealous. I am glad to hear that my girl is already more popular than her mother ever was. I don't ever remember nurses fighting over me! Fighting with me perhaps but not over me.

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.

Closing day tomorrow...

Bronwyn is still holding strong. We have had a couple of complications since the surgery but nothing of any consequence or serious concern. Tomorrow they are closing her sternum. It was left open so that her heart could swell and heal without putting pressure on it. She has lost a sufficient amount of the swelling and she is not retaining too much fluid so she is in good shape for them to close it. They will do this around tomorrow at noon. After that she will be given sometime to adjust to the closure. This is another hurdle to get over - but we are again extremely optimistic and think that all will go well.

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!

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.

Surgery Update

Hello all. Well Bronwyn is in the PICU recovering from her surgery. The surgeon came out to see us just after noon. He said he was pleased with the surgery and so far everything looked good. He warned us the next 24 hours is the most critical time. We just left her an hour ago or so and everyone was very pleased with how well she has been doing. She has already had an x-ray and an echocardiogram and they seem pleased with all the results. They have warned us that she can dip and have issues over the next 24 hours - but they are expecting this and are quick to act. They are monitoring her very very carefully. Her blood pressure dipped several times while we were there - but they expect this and reacted quickly to stabilize her.

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.

Tomorrow is the big day

Hello all - I don't have any news to report except that our girl is still stable and in good condition for the surgery. She is going in tomorrow at 7 am and will likely be done around 11 or noon. We are extremely positive that all will go well - of course we are extremely nervous and anxious - but positive!

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.

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.

Holding Steady

Bronwyn's surgery is going to be next Thursday. We are meeting with the surgeon to discuss all the details on Tuesday. We are anxious and scared for this next phase - mostly wanting to just get dealing with it. Like Bronwyn we are all in stable condition for the moment!

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!

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

Our new precious girl has arrived. Bronwyn Elizabeth Davis arrived August 15th, 7 am in the morning - she weighed in at 7lbs 8ounces. She is beautiful and lovely and we are super thrilled with her. We got a few moments with her before they took her off to the Stollery. She is there now - lots of tubes and IVs. She is in very good hands and we hope to find out soon when the surgery will be.

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.

Back on line

We are back on line - sorry it has been such a long time. There are no pictures this time as I haven't figured that out yet - hopefully I will soon.

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.