Feb 07 2010

Great day

By Dawn and has 3 comments.

Well after a day of (really) no change, we were excited to see a lot of things move forward today. As I said before Norah got one of her chest tubes removed before lunch. Then in the afternoon she got her breathing tube, her temperature line, and her catheter out. She also is completely off the morphine and other medicines as well. She now is only on Tylenol and still has one more medication to go. It is a medicine that helps to constrict her heart and get the gunk out of her lungs as well. They are weaning her off that tonight and hope to have her off of it tomorrow morning.
Because she became unhooked from a lot of wires/tubes, Daryl and I were able to hold her for the first time!!! It was so wonderful… I can’t even describe what it felt like. It was surreal! It was also wonderful to hear her little cry (even though it still sounds quiet and raspy). By the end of me holding her my arm was completely asleep and tingly, but I totally didn’t care!
We are hoping, and the Dr’s think, that Norah will be able to move up to the cardio ward tomorrow!! YAY! This means that we’ll have more room to be with her and I’ll be able to room in with her as well!
We feel so incredibly blessed by you all! It has been wonderful to receive all your little notes of encouragement. Thank you for thinking of our family.

Last night we met another family that needs your prayer:

Rebecca and Grant have a little girl named Oxsanah (Ox-anna). She is only 2 weeks older than Norah (so she is 4 months old). When Rebecca was about 20 weeks pregnant they discovered that there was something wrong with their babies heart. Oxsanah’s heart only has 3 out of 4 chambers and one of her valves was basically useless. The Dr’s all encouraged Rebecca and Grant to terminate the pregnancy but they refused. So they were told that they would be given compassionate care after Oxsanah was born, which basically meant that after her birth, her parents could hold her while she died. But, by the power of God, Oxsanah is still alive! She has a shunt in her valve and she is doing okay breathing on her own (she just got her tube removed today again…. for the second time in three days). The Dr’s think her only chance for survival is a heart transplant. I can’t imagine what they are going through. Rebecca said it has been a huge comfort to know people are praying for them. When they feel down, they call out to those praying and feel restored and strengthened. This is a beautiful family that really do need prayer! Please pray that Oxsanah can be healed and lead a long healthy life! She is a beautiful little girl and these parents have fought so hard for her. Please remember this family in your prayers!

Thank you all,
Dawn

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Feb 05 2010

Day 3: Waiting

By Dawn and has 1 comment.

Well it’s day 3 of our family’s adventure and it felt very strange (and wonderful!) to get a little break from the hospital today!  We were able to sleep in a little, relax in the morning and do a little shopping (got some great deals on some clothes for Libby for next year!).  Today also gave us a little bit of a chance to look around the Ronald McDonald house a little.  I guess I never thought about it before, but it has been such a blessing to have a wonderful place, with all the things we need, and we don’t have to worry about the price!  A hotel like this (without all the amenities) would be at least $100 (conservative) a night and when your looking at two weeks, that would be a lot of money!!!

Staying around here today also gave us the chance to see a lot of other families.  I can’t explain how I feel, knowing that all these families have a little child that is sick.  You see families that are trying to have some form of normality in a very abnormal situation.  And you also can’t take anything for granted… there are many families that are just trying to make the best out of a very sad situation.  There is a little girl here, named Hannah, who seems to know everyone!  She is very friendly and chatty, and is a very typical 2 year old, including the tantrums :D   BUT, it breaks my heart to know that the reason she is fairly grumpy (although she rewards us with a smile now and then), is because she got one (of many) chemo shots today and it makes her nauseous, tired and sore.  She is such a beautiful little girl and such a joy to everyone here!  Please pray for Hannah and her family that she will be able to battle the cancer in her body!  We are continually reminded that it can always be worse and God is with us every step of the way.  We are not without hope, because we know the Healer, the Maker and the All Powerful!!

We were told today that Norah’s surgery is tomorrow at 8:20am (which is 9:20am Sask time).  We will be at the hospital at 7 in the morning, and then we won’t see her for about 5-6 hours.  The surgery itself is only about 2-3 hours, but in the beginning they need to take her to put her to sleep and then after the surgery the nurses will set her all up in the PICU (Pediatric Intensive Care Unit).  After that, we can go in and see her…. please cover that moment in prayer for us!  I can’t even imagine all the emotions that we’ll go through at that time!!

So tonight we are in pre surgery mode.  Norah has already had one bath with some special soap, and then we’ll give her another one right before bed, and then it’s bath #3 before we leave for the hospital tomorrow.  She is going to be one squeaky clean (and sterile) little girl before that surgery!

Prayer requests:

That the surgery would go well, that Norah would be safe and that they WOULDN’T have to open up her pulmonary artery.  (If they have to open that up, there is a much bigger chance of complications afterward).
For Daryl and I as we wait during the surgery, and when we see Norah for the first time after.
That Norah would heal quickly, would stay infection free and that she would recover properly.
-For little Hannah, that her body would be restored and the cancer would be taken away.

Thank you all for all your prayers!  We are so thankful for how you’ve all encouraged us and cared so much for our family!  I’m not sure how much of a post I’ll do tomorrow, but we will try our best to update everyone.

Blessings,
The Grunau’s

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Feb 03 2010

Day 2: Changes

By Dawn and has no comments yet.

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! :D 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!
Until tomorrow!

-Dawn

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