A day trip

I have through all of this experience tried to keep our lives fairly normal and not be too influenced by Bronwyn's illness. This hasn't been easy however, that is why yesterday was so enjoyable.

We went to Banff with the kids to meet up with my best friend Alison and her family. She was there for a conference. We just had a blast and it was a great day to just get away for a few hours and pretend that we are just a normal family (again as normal as any family of mine could be).

Ali and Darren have a daughter, Aleya, who is 3 and a little (ahem) boy, Austin, who is about 2 weeks younger than Bronwyn. Any time we have been together thus far Gavin and Aleya have really enjoyed each other and it looks like Bronwyn and Austin hit it off too.

At the restaurant we were at Gavin and Aleya decided that they should dance together. It was so funny. Aleya is quite a good dancer, which is amazing because I have seen her mother dance - ha sorry Al. They were having a great time but they were getting in everyone's way.

We just enjoyed our visit so much. I have to say I am so proud of Alison and Darren. They are such excellent parents and have been such great friends to us. Alison has been a wonderful support to me through this latest struggle as well as many others in my life.

We love you guys and miss you!

I am so tired

I won't often admit this - but I am absolutely bone tired today. I think Bronwyn has decided to gain back all the weight she lost in 2 nights. Wes was howling at me the other night because I brought her to bed to feed her at some point (no memory of when). I fell asleep while she was nursing. Later on she decided to eat more and she just rolled over and latched on again - I woke up with a start and said "Where did you come from?" I couldn't figure out how she got there or how long she had been there. I am hoping that she is feeling full tonight and will sleep a bit longer.

A friend of mine (you know who you are) told me the other day that I am looking more and more maternal in all the pictures - I assured her its the lack of sleep. I then told her that you wake up one day and your focus is totally changed - there are moments when this really hits you hard.

For example: I have never been what I would call "plugged in" to pop culture, but I think I have hit an all time low. When we were in Edmonton I told Mom and Dad that I wanted to watch Oprah that day. I am not a big Oprah fan, I don't mind it - I just can take it or leave it. But this day I really wanted to see it. Why? Because she was having Daniel Cook on her show. When the celebrity that you are most interested in is a 9 year old from Treehouse you can suddenly feel pretty pathetic!

I know a lot of Mom's out there who are plenty cool so this is no way a reflection of motherhood in general - just the sad state of affairs in this household.

Best run the girl is cranking up!

Ahhhhh home

It is so nice to be home. Bronwyn seems to be doing pretty well so far. Gavin isn't so happy though. He asked for Mamma and Pop many many times today and kept bringing me my shoes and saying "car, car." I am afraid that he got used to be doted on hand an foot by two loving Grandparents - how can a mom compete with that (particularly a mom who is quite concerned about another child's health). He'll adjust though - he always does. And the good news is that his favourite people on earth (his grandparents) live close by.

Last night I was reading him stories in his bed and he took my hand and put his hands around a two of my fingers and started moving them back and forth like scissors. He then took my finger/scissors and started pinching my nose with them. I asked him what he was doing. He said - Alligator bite! - What can you say?

Bronwyn had a visit from her good buddy Cadence today. They were dressed alike - you know best friends do that!

We are home

Just a real quick note to say we arrived home safe and sound. I am so unbelievably tired. I think around Airdrie I started to feel close to home and a huge wave of tiredness (is that a word?) hit me.

I wanted to post a pictures - but not of my little rascals. I wanted to post a picture of Quinn. So many of you have prayed for him and continue to remember him and his family. He was the best roommate we ever had and he is so darn cute. His older sister Hannah is amazingly cute too!

So here is Quinn with his Mommy - Kim. You should see his eyelashes - they are soooo long.

We wish you all a very good night as that is what we hope to have on our end.

Mom is less grumpy today

But I am very very tired. I had a much better night last night at the hospital because I didn't have a roommate. The nurse, who had been Bronwyn's nurse the night before, redirected a patient that was supposed to be put in Bronwyn's room. She told them to put the patient in another available room because she felt that Mom needed a rest. I could have kissed her! Seriously!

We are at the condo - yes all of us. We are coming home tomorrow morning. Dr. Rebeyka walked by Bronwyn's room today and asked - Why is she still here? After I heard that I was hot to trot to track down the doctor on call so we could be released. My one regret is that we got a new roommate just as we were being released - it was baby Quinn. Now that is a roommate I would have loved! I was almost disappointed that I wasn't staying one more night so I could bond with him. Kim and Ben (Quinn's parents) have been such a great support to us and we wish them all the blessings that God can give.

Again, I have to say, bad roommate experience aside we are so thrilled for the wonderful care and skill of the people at the Stollery. Our daughter has done much better than expected and she charmed and won the hearts of everyone who cared for her. Mostly I am just so overwhelmed when I think of what God has done for us. I am so very grateful that he has seen us through yet another scary time. You should see me trying to sing Jesus loves the little children - I become such a mess.

Mom and Dad have been so amazing. We couldn't ask for better support. We will be eternally grateful for their care and love.

Thanks again to all of you who have prayed and wished us well. We are so sure that the multitude of prayers has been answered with abundance. As well thank you to all the Churches of Christ across western Canada that have been praying for her.

Mom is grumpy today

Many times through this process people have told us how well we have handled the situation. I always say "We don't have a choice." I also add that I haven't met any parents who haven't been handling it well and most people just do what they have to do. Well, I guess I finally met parents who seem to be unable to handle it. In fact I shared a room with them last night. Their little guy had a fairly non-invasive procedure but their son was the only patients in the hospital.

I will not gripe to much about my awful night but I will tell this one funny story. The mom was chatting with the Doctor about sedating her son because he couldn't sleep because of all the noise (that would be me). I wasn't supposed to be listening but what can I say I was 7 feet away. Anyhow, they were discussing the sedative and finally the doctor suggested that it might do her son more good if she took the sedative not him. I nearly peed my pants trying not to laugh.

They have been discharged which is great! Never been so happy to see the back of anyone.

On the upside, Dr. Rebeyka was by today and was saying just how great Bronwyn was doing and how rare it is to look at sending a 2nd stage Norwood baby home so soon after surgery. We are just so disgustingly proud of our girl. The cardiologist was laughing because she just stares at him when he comes to talk with us. If he moves she follows him with her eyes. I told him that it is the white coat. Those people who wear white coats do things to her - poke her etc.

We hope to be home soon - thanks again for all your love and support.

We are upstairs

Bronwyn was moved yesterday late afternoon to the Cardiology ward. I stayed with her last night as she is nursing. Have I mentioned before just how much I love staying at the hospital! Yippee. Anyhow - I love my girl that should get me through.

They are talking about possibly sending us home early next week. That is provided all goes well over the weekend. They did discover a blood clot in her neck (from the IV). This happened after the first surgery too. It just means that we need to keep giving her the needles she was getting before surgery.

They were calling her the super star on rounds this morning. Of course she's a superstar! Well that and she has the best pediatric cardiac surgeon in the world (this never hurts I suppose).

I'd be thrilled to my toes if I was so horribly tired. Have I mentioned I hate sleeping in hospitals. I was so pleased last night when I got back to her room because her night nurse was one of my favourite nurses from her visit last time. It was so wonderful to see a familiar face let alone such a wonderful nurse.

Sorry I haven't had photos in a while - I will try to get some posted soon.

Our girl is great

Bronwyn is doing such a great job of her recovery. We are just so proud of her. She has been eating since yesterday and I was able to nurse her a bit today. That went well so we are hoping that we can just pick up where we left off shortly. The PICU isn't a great place for nursing your baby but once we are moved to the ward it should get easier. She would have been moved upstairs today if they had a bed but we are hoping they will have a space for her tomorrow.

As I write this Gavin is helping me by holding a flashlight up to the monitor! Wow what a helper.

I thought that now that the smoke has cleared a bit I would share some thoughts on one of the hardest parts of this process. I think most parents in similar situations would agree that physically handing your child over to the nurse to take her into surgery is likely the toughest thing you will ever do. Many parents go with their child while they are put under - I did this for her MRI and I decided that this wasn't something I wanted to do again until she was older.

I have thought about this a fair bit and I think that the moment that you pass your child over for major surgery is all about faith. Yes it is about faith in God which is in someways is the easiest. It is also about faith in people - faith in the nurses, the doctor's, the equipment, in the health system. You feel like you are stepping off a cliff but you don't know how far down the ground is or if there is water or dirt at the bottom. Your mind and logic have to override your instincts which say to keep your baby safe from harm. The rational side of you has to work hard to control and convince your mothering side to just let go and it will all be OK.

I am sharing this not to upset everyone but I know many of you have done similar things and it isn't easy and I don't want to pretend that it is. But I can say that in our situation the results of this faith has been very rewarding. We thank God for protecting our girl and we are so grateful for every day that she does well.

Just a funny note

We are doing well. Bronwyn ate well this afternoon when they gave her a bottle. They are weaning her off her meds and her various IV's quickly. This is a much faster process than the last operation.

We took Gavin to see Bronwyn this evening. I thought it would help him to understand why she isn't coming home. As you walk into the PICU they have lino stars in the floor (I had never noticed before this evening). Gavin saw the stars and started singing "twinkle twinkle little star" - or "tinko tinko ito tar" (as he says it). He was singing quite loudly. All the staff that we passed by stopped to see who was singing - he is shorter than all the equipment so he was hard to see. As we got close to Bronwyn's area we passed by a meeting of doctors and nurses. He continued to sing as we walked by everyone. He sang until he was done the song. Everyone was so amused. They all stopped every conversation and just listened and joked about Gavin and his singing. I over-heard one of the doctors say "Well, that just made my day!"

What a cutie! I'll say it even though I am biased.

So far so good

We are crossing our fingers because Bronwyn is doing really well so far. The nurse was concerned because she has noticed that Bronwyn has a temper. We told her that this was nothing new. She also said that she thinks our girl has a lot of "attitude". Well, have you met her mother!

They took the breathing tube out this morning and she is doing very well with that change. They are going to try bottle feeding her this afternoon. I thought they would tube feed her first so I am thrilled that we might skip that step.

It is very hard to do updates right now because Gavin is very enthusiastic about the "pooter," so Mommy doesn't get much of a turn.

I am also happy to report that we have seen baby Quinn and he is doing great. We have also seen another family, and their daughter, that we met when we were here last time - so it is almost a party!

Again we want to thank you all for your prayers and support. This has been quite the ride and we will always be extremely thankful for all the love that has surrounded us. You are all so very wonderful and we thank God daily for the support.

Bronwyn pulled through

Once again our girl has pulled through in great shape. We didn't get to talk to the surgeon yet - but so far all the reports are extremely positive. We left her for a while as she is still heavily sedated. So far so good.

The Dr. we talked to was very optimistic about how the surgery went. I have a few questions to ask Dr. Rebeyka about the surgery and if they addressed some other issues that they had earlier been concerned about.

We will keep you all posted. But for now we are very relieved and looking forward to her recovery and return home.

Quick note

Surgery will be on Tuesday.
Please keep us in your thoughts and prayers

We have a date... sort of

We are leaving for Edmonton tomorrow. Bronwyn is to have her pre-admittance visit Friday with the chance of having her surgery on Monday. If she gets bumped from Monday's spot they will do her surgery some time next week. We received the phone call this morning so it isn't much notice.

I can't write long because both my children are being high maintenance today. I will keep you updated.

Things that go bump in the night

We are still waiting to hear about a surgery date. We are all tired today.

I was disrupted from slumber early this morning. I heard a loud and unusual bang. I jumped up thinking someone had knocked something over. I check Bronwyn first - she was fine. I checked Gavin next - he was fine. I then went into the hall way and turned the light on. By that point Wes was awake and joined me. I was also now awake enough to identify that the noise sounded like a crowbar hitting concrete.

If it was concrete the area of concern is the basement. I thought - if I was a burglar and I had made such a loud bang - I would leave quickly and go straight to the nearest career office to reconsider my options. So I figured that since I had not heard any other noises we were OK in that regard.

We also have a very shaky drier and things frequently fall off of it - making disturbing bumps from the deep. But it was not running.

My next question was, "Wes did you leave something heavy like a crowbar hanging somewhere where it could drop?" He looked concerned and said - "Oh, yes - I think I know what it was." I responded, "Do you want to check?" He responded, (sorry for all the responding) "No it is fine I am pretty sure I know what it was."

We then all returned to bed - of course the commotion in the hallway had caused our oldest child to wake up and he insisted on coming to bed with us too.

Moral of the story? I guess - don't go to bed too late? I don't know - some stories just don't have a moral or even a point.