Well today has been an exhausting, long day, but we made it through! It all started at 5 this morning when we had to feed Norah and get ourselves ready to go to the hospital. Then we were at the Stollery Children’s hospital from 6:30 til after 2!! Needless to say we’re all a little tired (as I write this Daryl and Norah are both having some well deserved sleep!), but we survived today and we’re still smiling!
It all started when we were shown what would be our little room (home base so to speak) for the day. Then Norah got her vitals taken -still hasn’t broke 10 pounds-, and went to go get a chest xray done. You would not believe the contraption they put her in… it was a clear tube and a little bicycle seat. They got Norah to sit on the seat and then closed the tube around her while she had her arms above her head… needless to say it wasn’t her favorite thing of the day! Then the poor girl had to get poked to get blood work done…. but she did settle down really quickly after, so I don’t think it was too bad for her. Then we met the surgeon and the anesthesiologist and got to pick their brains and ask all our questions. We also met with the physiotherapist and the social worker, who were both friendly and very helpful. Then Norah was sedated, so she was in a deep sleep, and she got an echocardiogram done (for 2 HOURS!) and an electrocardiogram done too! They were thinking that they might have to operate on the pulmonary valve, but after closer examination they are thinking that they probably won’t have to (although they won’t know for certain until they are operating). Please pray they won’t have to cut open the valve as there is a higher chance of complications that can happen with the surgery then.
Everyone who came in contact with Norah fell under her charm as she smiled and talked to them. The words “happy”, “beautiful”, and “content” were used A LOT! 😀 We were very proud of our little girl… she was such a trooper! And may I say I was quite proud of myself as well… I never cried once! (I’m saving up for the surgery!)
Today was also a lesson that nothing goes as planned, and that there is always a positive way to think about it. The first change we discovered was that Norah would be having her surgery on Friday instead of Thursday. Now we could be all frustrated and annoyed, but you know what? I’m not. There were 2 emergency cases that presented and I wouldn’t trade places with those families for all the money in the world. Yes, Norah’s case is serious, but the fact that I don’t have to worry she might die until she gets this surgery is something that I can be very thankful for! So now we have a full day tomorrow with nothing to do… I’m thinking IKEA (Daryl’s thinking Hobby world…. maybe we can compromise – hey, I said maybe!). Another change was that we found out there was room for us to stay at the Ronald McDonald house. All I can say is WOW!! This place is amazing and such a huge blessing! Our room is fantastic and it is wonderful to be with other families who can all understand what we’re all going through! We are already loving it, (and Daryl is really happy to be reunited with technology once again!).
I will try to take picture and post them another time, so show you our new home. It could be our home for a little longer than expected… they are thinking that it might take Norah 10 days or so (after the surgery) to recover because she is soooo small. It’s not that much longer than we thought, but I realllllllly didn’t want to be away any longer than I have to. I am already missing libby like crazy!
The fact that we are going to be away longer has only increased our gratitude to all those who have helped us pay for all our costs. Thank you to everyone who has given to us! Such a huge blessing to not have to worry about finances and instead just focus on Norah and her needs!
We are going to find out the time for Norah’s surgery tomorrow afternoon and we will post it as soon as we know!
Thank you so much for praying for us! Please pray for our parents and Libby as well. This week she is with Daryl’s parents at the farm. Even though we know she is having a fantastic time, it is hard to not miss her like crazy!! Pray that she has a special time with her grandparents!
Here is the first post by Dawn as she wrote on our Carepage….
Well, we made it to Edmonton safe and sound! We had a great dinner with my cousin and her husband and now are all settled in the mennonite guest home. It is a nice big house with about 8 guest rooms. It is very clean, and we have a nice room. It is very quiet here, and all the people staying here (that we have met anyways) are all older. The only thing is there is no tv or internet and they actually don’t even want you using it in your rooms. As you can imagine, Daryl is going crazy! It’s a good thing we got the data plan iphone!
So tomorrow is our first (of many) busy day(s)! We are planning on leaving here at 6:15am, and then all the pre operation testing will start at 7am. We have been told to expect to be there until around 1 or 2 in the afternoon (over 6 hours… YIKES!). The dr’s will give her a mild sedative so they can do tests and get a nice clear picture of her heart. Then we will meet both the surgeon and the anesthesiologist and get a tour of the PICU (where Norah will stay after the surgery).
So far our spirits are up, and I am personally looking forward to tomorrow to get some questions answered and see where we will be. I would just love to zoom ahead a few weeks and forget about this part, but I know that the future will come soon enough on it’s own! I was just telling Daryl today that I don’t know how my heart can feel so strong and so weak all at the same time! I am amazed at how well I am taking this all (and I know it’s only through God’s strength – thanks for praying!), and at the same time I feel completely helpless, weak and out of control. At the same time I have been reminded that it’s a good thing I don’t have control, and I can also completely trust the One who is! Praise God, that I know my loving Father is watching over Norah, because I don’t know if I could handle this otherwise!
Well I’d better go, Norah is quite unhappy right now and we are going to try to get her to sleep. I feel bad for the gentleman that is next door to us…. I’m sorry!
Here’s hoping we get a good sleep in tonight!
I’ll post here tomorrow to let you all know what time the surgery is happening on Thursday!
So it’s been awhile since I’ve updated everyone. Mostly because not much has changed around here. This will probably be my last website update while in Saskatoon. The next ones will come more frequently when we get to Edmonton. Holy Cow we are leaving for Edmonton on Tuesday and Norah is having open heart surgery!!! I’m still having a hard time wrapping my brain around this all. Somehow I haven’t really freaked out completely yet, however stress levels are obviously higher around our house. Even Libby has noticed a time or two where Mom and Dad seem to be different, yes, that’s how I’ll put it, different. Please pray that we continue to have peace and that stress levels can stay “normal.” Wait, what the heck is normal stress levels in a time like this?
I’ll just stop writing like that as I might have begun the “freak out” if I kept that up. Whew. Anyways, thank you so much for those that have already helped us out financially. We have raised over $700 to help cover expenses. If you still wish to donate please visit here and just add a comment for what the funds are for. These funds will go through my work at Ranger Lake Bible Camp which has set this up, all gifts will be tax receiptable. Again, thanks so much for those that have helped out.
We will be doing our best to keep everyone informed about what’s happening while in Edmonton. From my twitter to facebook to this site you should see updates. Also Dawn has setup a “Carepage” here, which is a website hosted by the hospital as we are told internet in the hospital has been known to block facebook for some weird reason. We shouldn’t have issues with hospital internet as I have added a data plan onto my iphone and we will be getting most of our internet that way. So their should be no problems with us updating in a few different places.
Thank you for all your prayers and support. We look forward to coming home and celebrating when this is all over.
Praise God! We have been granted a surgery date in Edmonton of February 4th. This is sooner than we where expecting and it just goes to show how God is listening to our prayers and looking after our little girl. Right now we are still excited to have a date set and the reality of what is going to happen in surgery isn’t setting in yet. We are still at peace that God is in control and we know that He is with us every step of the way. We are so thankful for getting this date as early as we have.
On a related note: Yesterday while attending the Saskatoon Evangelical Youth Workers monthly meeting, myself and my family received an outpouring of love and prayers as I was surrounded and prayed over. I don’t think it is a coincidence that we got word of surgery date the very next day. God is so awesome! When I told them about how we had applied at Kinsmen Telemiracle for funding to cover our travel, accommodations, and other expenses they felt led by God that the Body of Christ should help rather than relying on another organization to help a brother in Christ. Therefore, Ranger Lake Bible Camp is taking donations to help cover our expenses. We have already received over $200 and are feeling so blessed by this act of love and generosity. If you would like to help with our expenses, which could be close to $1000, you may donate online to Ranger Lake here and just add a note in the comment box to let us know that’s what the funds are for.
Thank you for all your prayers and support. Please remember to mark down Feb 4 on your calendars to pray for us. Also please be praying that our family and Norah stays healthy. Any sickness, even if only small, will delay her surgery. Which also means that if you are visiting us, please just stay away if you have any cold or flu symptoms, and remember that we still love you and will happily have you come visit us after the surgery is over or you get better.
Donate to Ranger Lake Bible Camp to help the Grunau’s
Most of you know this already from my many facebook status updates this past week, but in case you missed it. On Tuesday we went into the hospital to have Norah’s NG tube put in. We have been trying to do whatever we could to avoid this, but Norah just wasn’t gaining weight. We realized that this was the correct decision and as unpleasant as it seemed, it was necessary. God continues to give us peace about how He is walking us through this journey.
Tuesday late afternoon the tube went in. Watching this was the hardest thing I’ve had to see Norah go through. However, once it was over (it is very quick), and once Norah stopped screaming and we stopped crying, it really wasn’t as bad as we thought. Norah actually screamed louder each time they had to take her blood pressure. So after a couple nights in the hospital we finally got to leave. We had to stay for so long to get the feedings down, learn how to use the feeding pump, how to put in the NG tube (Dawn did it once), and to make sure she was gaining weight in a healthy manner. On the first day she actually gained weight too quickly. Weird. Here we had been trying to get her to gain weight and she goes and pigs out first day in the hospital. What we didn’t know was that gaining weight too quickly could be really bad. So they got that figured out and we are at home now. Norah is taking to the new feeding schedule very well and had gained 8oz just in the time at the hospital! We are so thankful to all the nurses, dietitians, and doctors at the hospital. They made our short time there so much easier. It makes me appreciate all the nurse friends I have so much more. Who knows, maybe I’ll go back there to volunteer some day.
So now we just continue to wait for Norah’s surgery. And we also hope we can figure out how to get some rest in the meantime. Please pray that a date would be given to us soon. Thank you for all your prayers and support.
Just wanted to give everyone a quick update to pray for us as this afternoon we had Norah admitted to Royal University Hospital to have her feeding tube put in. While it was difficult to watch the tube go in for the first time we are seeing that she is taking a lot more food in already. In just two feedings she “drank” 6 oz, which before would have taken most of the day. So we are beginning to see the advantages, however, we are still getting used to having Norah hooked up to machines and equipment to monitor her.
As I write this I am at home alone as Libby has gone to the grandparents until Norah can come home and there is only room for one parent to sleep on the peds ward. It is very weird to be at home alone. While one would think that I should be able to catch up on all that sleep I’ve been missing, however, I’m not sure I will get much rest tonight.
Please pray that our hospital stay can be cut as short as needed and that Dawn and I will feel comfortable to bring Norah home soon and continue tube feeding on our own. After seeing the tube go in, I just can’t think of one of us having to put the tube back in when she pulls it out or it needs to be changed. Thankfully we know some nurses
Lastly, pray for Dawn tonight as she is alone at the hospital.
It seems like such a long time since my last update. I feel like so much and yet so little has happened since my last update. Holidays was mostly relaxing as I was able to be at home with the family. However, it was also very exhausting and in some ways continues to be. In an effort to do whatever we can to avoid a feeding tube we have been feeding Norah as often as possible. We continue to wake up and feed her in the night, which is the job I get to do. While the routine has set in and we are somewhat used to it, we still continue to fight the lack of sleep we are getting. But, it is all paying off because Norah doesn’t need a feeding tube, yet. She is finally over 9lbs!! (She was 7lbs 13oz when she was born) Now we are in the waiting game as we wait for her surgery. While there is some paper work we can do like Ronald McDonald House, Kinsmen Telemiracle Funding, etc, etc to keep our minds off the actual surgery itself, in the back of our minds is still this one big thought…. Norah is getting OPEN HEART SURGERY!!!! Please pray for our energy levels, while we are leaning on the peace of God and feel like He is in control, we still have moments and need to continually reminder ourselves that we are not in control. And for that fact we are thankful.
The next step now is to keep doing what we are doing to help Norah gain as much weight as possible before her surgery. Until next time.
Hey everyone the LOVE adoption shirts are now available for purchase for $25. Buy a shirt and know that the proceeds are helping a wonderful couple in their quest to adopt from Ghana. In fact, we are having a fundraiser this coming weekend. To get your shirt and your tickets to the Steak Night, please contact Kathy at 306-222-8731. Please get your tickets before this Wednesday as that is the cut off date.
Let’s all show this couple how much we love and support them as they get ready to fly to Ghana in less than 2 weeks time. And don’t they just look great in those shirts? Who wouldn’t want one?
In a stunning turn of events the Grunau’s ended up getting a Nintendo® Wii this Christmas season. It has been more than a few years since I sold my Xbox and my old Playstation has been collecting dust in the garage for quite a long time. So once again, we are the proud owners of a Wii. While I will admit that a PS3 with its Blu-ray and assortment of games did entice me, but the creative game play, the “get my butt” off the couch ability, added with the ability for my kids to play video games from my childhood ultimately won out. So far we just have the Wii Sports and Mario Kart as we bought it in a bundle. But we plan to join my parents (that’s right, my parents had one before me) and get Wii Fit.
So for those of you out there that already have a Wii, what games would you recommend? If you own one I would love to become friends on the Wii and try out some online play. Especially if you have Mario Kart too. The other games I will one day own will of course be a version of Rock Band or Guitar Hero, but until then, I will be mastering Mario Kart. The other thing I plan to do is get a classic controller and buy a few of the original NES® games. Then my kids can really learn to appreciate great games. Afterall, Nintendo® keeps proving itself as a world leader in video games, and has proven that faster, better hardware and graphics don’t make games better. Great game play, and design do! Thanks Nintendo® for years of entertainment and many more to come at the Grunau’s.
Well, it’s official. The regular blog updates have been replaced almost entirely with Norah’s Story. Maybe someday this story will reach and end, or maybe I’ll find time during the holidays to post something worthwhile besides these updates, but until then…
Yesterday Norah had her weigh in. After a long wait at the hospital to get a quick weight and check (so I’m told as I couldn’t be at this appointment), we found out that Norah had only gained 56 grams in 5 days, which is just under 2 oz. Wow is what I thought. That’s it? This little bit of growth for the hours of work? I guess it could be worse, she could have lost weight. But come on. So the next plan is to increase the concentration of formula we mix into her bottles to the maximum strength. We had tried this a couple times already, but found it bothered her stomach, but I guess we will just have to deal with that now. But the best part of this new plan is that we have to wake her up at night to feed her. So her 2am to 8am stretch of sleep will now be interrupted. Norah won’t mind though as she has been learning the art of feeding in her sleep. This has actually been the best way for her to eat, but now it means alot less sleep for us.
So we will add one more thing to do to get Norah to gain weight and hope this one does the trick. The benefit of this last ditch effort is that we won’t have to be learning how to use an NG tube over the holidays. However, on Dec 29th we will go for another weigh in, and if she hasn’t made significant progress by then, we are quite positive she will need the feeding tube then. Please pray that Norah can gain weight over the holidays. So while you are finding it easy to gain weight over the holidays with Christmas baking, turkey and stuffing, remember that not everyone has it so easy. Please keep us in your prayers over the holidays.
Until next time.