All done at PAC

We just got back from the hospital. Nate was a different boy after waking up from his sedation and finally getting some food in him. An hour into his ultrasound, he actually woke up, and they still hadn't taken all the pictures they wanted to. Complex heart = lots of pictures required for the study. Don held him and we gave him some milk, so they took a few more pics while he held Nate.

I wasn't aware of this, but surgeons and cardiologists from several different centres (including Nate's - Dr. Soni) actually do another video conference this afternoon, before surgery tomorrow.

We have a late surgery time, 2:40pm, Dr. Rebeyka's second of the day. It means another day of fasting, but understandable since surgeries that require use of the bypass machine are always the first of the day, and it sounded like his first was a lengthy and complex case.

They expect Nate's OR time to be 3 hours, which includes the time it takes to get the lines in once he is under general.

More later, glad this part of the day is done!


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PAC so far...

This will be short, but here's a little update on our PreAdmission Clinic day. We've seen most of the people we needed to. Right now Nate is sedated and having his ultrasound. He has struggled and been upset for every test and new person he has seen. Don't blame him though - there's some not fun stuff he's had to do! The staff here are great, though! When talking to his surgeon this am., he said he had a "big, big, big, big, case tomorrow before Nate". He is expecting that one to go well, but said there is a chance of delaying Nate's.
More later when I have a real keyboard!

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Home away From Home

What a day!! It was so hard to say goodbye to Brady. Call me a mother hen, but I just need my boys close to me. It didn't help that he was feeling a little under the weather. He, on the hand, was pretty happy about his situation!!

Our appt. in Winnipeg was done by about 2:45, and we made it to the airport in plenty of time. It was encouraging to talk to the surgical coordinator at the clinic about the sugery, hearing how quickly little ones recover from it (and that at this age they don't remember it either!).

Nate went a little crazy in the airplane. I don't think I've ever seen him that hyper and excited!! After all the 'exciting' stuff was over and we reached altitude, he fell asleep in my lap. It was 5pm by then, so his nap was overdue. His grandpa would be proud that he was such a good flyer!

We're all settled in to our room here. Don is lying down with Nate to help him fall asleep, and the alarm is set for 5:30. Oy!

It's been a pretty emotional day for me. Every step of the day brought us closer to the reality of what is ahead. Saying good night to Brady on the phone tonight was also incredibly hard.

Nate is blissfully unaware of what is to come, and that just breaks my heart.

Thanks to everyone who is praying for us, and to each person who has sent us a note with their prayers and encouragement. Although each one makes me cry :) hearing from you blesses us in a big way!

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Packing Up

At least Brady is excited about it! He has some super fun sleep overs to look forward to!

I, on the other hand, am trying not to think about it too much, but time seems to be moving along faster than I am, so it's time to just get 'er done.

Hard to know what to pack when you really don't know what it's going to be like! The only thing I know to pack for myself are clothes that will double as appropriate pajamas (!). Even though they have arranged a place for us to stay right across from the hospital, one of us will always be with Nate, and I have a feeling it will be pretty hard for me not to be with him during the nights!

Here's our plan:

Monday - appointment with Nate's cardiologist in Winnipeg at 1:00pm, about 1 1/2 - 2 hours. Fly to Edmonton at 4:30pm, arriving at about 5:30 local time. Shuttle to the hotel will take about an hour. Then, try to get some sleep!

Tuesday - Nate will have to be fasting for his sedated ultrasound, and have no liquids past 7am. Report to the hospital at 7am, when appointments with the surgeon, anesthetist, resident, nurse practitioner, social worker, to name a few begin. At 10am he'll be 'served' his sedation medicine, and we'll wait till that takes effect and then he'll have his ultrasound. When he wakes up, we'll continue with meeting the above team members, have an EKG and blood work, and get an orientation and tour of the PICU (Pediatric Intensive Care Unit). That should take most of the day.

Wednesday - Surgery day. At this point we don't know when, but should find out on Tuesday. My mom is going to be flying in Wednesday evening and staying until Sunday. It will be great for Nate to have another familiar face there, and for the help she will be to Don and I!

This morning Brady woke up with a bad sounding cough. I'm trying to keep the two of them from interacting too much. The worst thing would be for Nate to develop any kind of cough or illness right now! Thanks for your prayers!

My plan is to post updates to the blog as often as I can so friends and family will know where things are at through out the day. I need to thank all of you for supporting us in so many ways - and for all the encouragement and prayers that we've received - both in person and here on the blog. It means more than I can express!

We have a date

And no, unfortunately it's not the romantic kind of date for Don and I!! We got the call yesterday that Nate's pulmonary artery banding surgery has been scheduled. We leave in 10 days. We'll have an appt. with his cardiologist on Monday, March 8th in Winnipeg, and fly to Edmonton later that day. Tuesday, March 9th will be a full day of appointments in the Pre Admission Clinic (including a very NOT fun sedated ultrasound). Wednesday is surgery day.

Although we've been waiting to get this call and the dates for surgery for a couple of months, somehow it was still a shock to actually get the call with real dates. Probably a good thing that we only have 10 days to prepare for it!

If you haven't already, take a minute to read the post from yesterday. Nikki's words are so bang on!

A 'Borrowed' Post - From Broken Little Hearts

The blog world is such a great place! I met another Heart Mom, Nikki, today. Her blog Perfect Broken Hearts chronicles her daughter, Abby's, journey. Nikki is an advocate for Congenital Heart Defect Awareness. I look forward to learning more from her and following their experiences.

This is a post from her blog - she talked about "Things I Wish I Had Known". Her words are not only an encouragement to me, but also a lot of feelings that I've had, but haven't been able to put into words so eloquently. Even though our journeys are very different, the heart of the matter is the same. I think you - my friends and family - can benefit from this as much as I have.

I share her words with you, with her permission:

1. I wish I had known that no one else will fight for my child as well as I can. When it comes to her health and wellness, her hospital stays and her emotional needs, I know her best. Doctors, nurses, interns, surgeons…all these people are vital in her care but, I know her best. It is okay to question a doctor or surgeon. It is okay to seek a second opinion if I feel I need one. I do not have to sit by and allow them to dictate her care to me. It is easy to be so overwhelmed that you just wait and listen numbly, nodding and trusting so completely that they can save your child that you will do anything…if that feeling arises in the pit of your stomach, telling you that something isn’t right or something different should be done….listen. The relationship with the cardiologist, surgeons, and pediatrician need to be one of trust and communication. I went through three pediatricians before I finally found one I trust completely and can ask, any time of day or night, about anything.

2. Life is too short to lose even a second with a heart child to mourning. Those who are diagnosed in-utero have a time for mourning and coming to grips with a CHD. Those who learn of their babies defect after delivery have to mourn at the same time as becoming a new parent. The mourning often overshadows the joy. We found out at three days of our daughter’s heart condition. I cried for days. I walked around numb and fearful and angry and confused…so many emotions to deal with. She slept between my husband and I because I was so scared she might stop breathing in her sleep. After she would fall asleep I would weep, as quietly as possible. One night, my crying woke my sweet husband. He asked what was wrong. I was shocked! How could he ask what was wrong? I sobbed out, “I don’t want her to die.” He looked at me and said, “We don’t know what tomorrow will bring. We have her with us now though. Shouldn’t we be happy for the time she is with us?” I was stunned….he was so right. What if she was only her a short time and I wasted that time mourning, instead of soaking up every last ounce of joy and love she brought with her. I still had to work through the emotions of mourning, but I no longer let it consume my every thought. Instead, I focused on every moment I had with her in my life.

3. Children with CHD will ALWAYS live with CHD. My daughter had a very rough open-heart surgery to fix her Tetralogy. Nothing ran very smoothly and she was put on the bypass machine three separate times. We were “prepared” by the hospital staff for the worst while hoping for the best. We were blessed with a positive outcome. Abby has been told her surgery story time and time again. How rough it was, how she almost didn’t make it out of surgery, how the surgeon told us it was hard, how they prepared us for her to come out with brain damage….all the amazing terrible circumstances she overcame. Abby is now facing her second open-heart surgery. She is ten-years-old and imagine what all those stories have done for her confidence in this upcoming surgery. She is fearful…fearful of possibly dying, fearful of suffering brain damage, fearful of the doctors not being able to fix the problem…she is scared and part of her fear is my fault. Her story is amazing and she is a miracle. I told her her heart story because it is so amazing, however; I wish I had the foresight to see how it would effect later surgeries. My telling would have been gentler, filled with a focus on the progress and miracle of it instead of on the terrible circumstances she had to overcome.

4. Others don’t understand, and many never will. Abby looks perfectly healthy. She is smart and outgoing and likes all the same things other kids like. She doesn’t look fragile by any means. The constant worry and fear can’t be fathomed by others. Finding out Abby has been exposed to strep throat or the flu knowingly makes me CRAZY!!!! I want to yell…WHY? WHY WOULD YOU DO THAT? Then I must remember…she looks healthy. They couldn’t possibly fathom what strep throat, the flu, second hand smoke, bad air quality…and so many other threats and germs could do to her. All I can do is remind and ask politely and hope they will respect since they can’t understand.

5. The heart defect does not need to limit my child. Having a child with CHD does mean as a parent I need to be extra vigilant and diligent. What having a child with CHD doesn’t mean is that I need to make her and everyone around remember that she is disabled or fragile. I know how special Abby is in so many ways, but my relationship with her will never be like anyone else’s. So, instead of focusing on her CHD with others, I let Abby forge her own relationships her own way. I inform those who need to know of her condition, like school teachers and others who see her, but I inform them quietly. I don’t make a big spectacle, I don’t even do it in front of Abby. She didn’t even know I told her teachers about her heart until last year. I NEVER want her CHD to define her. She has so many amazing talents and qualities….her CHD is a part of her but does not define her. She is now getting more comfortable with it, she understands it more and even starting to spread awareness and talk about it more with others. But, until she wants to talk about it and share it and tell the world about it, I won’t force it upon her.

There it is…my five things I wish I had known when the journey began. All CHD parents probably have different things than mine. This is a beginning of some of the things I would do the same or differently. Hindsight is 20/20 but awareness can help!

Thanks Nikki!