Well life hasn’t slowed down much around the Grunau household. Seems we got back from Edmonton and have been busy with Norah and Libby. Then add work ontop of that and I have really good excuses for not posting on here. However, I do apologize for not posting since we’ve been home. Shame on me I guess.
Anyways, first I will update you on Norah. This past week we have seen a big change in Norah. She is learning well how to drink from a bottle and has already begun to learn how to nurse again. While we haven’t had her weight checked we are certain she is gaining as she is looking more ‘chubby’ each day. Praise God. This transition has been alot smoother than we thought and are so happy that Norah has been off the feeding tube for over a week now. She is more alert, more cheerful and gives us alot more smiles than before the surgery. It almost feels like we have a new baby at home. We still have some appointments and check ups for her, but the Cardiologist has given us the next appointment of 6months from now!!! Libby is learning to have fun with Norah too. She is always wanting to help out, or ‘teach’ Norah something. This is just the beginning of Libby getting Norah into trouble! I keep wondering what I will catch those two doing in a year or two.
As we try to settle into a normal routine of life, we are extremely thankful for Jessica Benson having organized supper meals for us for the first couple weeks when we got home. We have enjoyed them alot and look forward to another few days. This is just one of the many many blessings that have been poured out to our family through this journey. Thank you to all of you that have donated funds, cooked meals, phone calls, and most importantly your prayers. We are so blessed to be surrounded by such wonderful and caring people.
Words cannot fully express our thanks. We hope that one day we will be able to have the opportunity to bless someone else going through the same things our family has gone through.
So this marks the beginning of the end of this chapter. Until next time.
Today was the day that we finally moved out of the PICU. It was very refreshing to get away from the PICU as it can be a very stressful place to be. Although we did enjoy our nurses there.
We have moved into the Cardic Care Unit and share a room with another little girl. Norah is doing really well. Our biggest struggle and prayer request is that Norah would learn to feed. We have gone back to feeding through the NG tube as we did before surgery. Thankfully we are comfortable with this and will be able to go home continuing this routine. Norah has lost the suck and swallow ability as we told that this “skill” can be lost rather quickly. Thankfully she still loves her soother, so we will have to meet with a speech path who can help to reteach Norah to swallow. Please pray that she can be a fast learner. While this won’t be a hurdle to us coming home, we would like to learn as much as possible before we leave.
The only difference to being off the PICU; besides not having 1-1 care anymore; is that there is a bed for Dawn to room in with Norah during the night. However, this also means that Daryl has to go back alone to the Ronald McDonald House alone. While not a huge deal, it is difficult to leave. Hopefully our little family can be ALL back together soon.
We got a chance to talk to Libby this morning. She is loving it over at Grandma and Grandpa Klauses. However, we are all missing each other, especially Mom.
Thank you for your prayers. Until next time.
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,
Today has been a very very long day. One that I hope we will never have to go thru again….
It started very early at 5am as we had to give Norah her last of 3 sterile baths to prepare her for surgery. Then it was off to the hospital to be there for admitting at 7am, with surgery scheduled for 8:20am. We were very prompt and actually got to the hospital early. When we got to the pre-admissions clinic we again got news that it would be delayed till 11am. So we began the first round of waiting. However, this waiting was with Norah sleeping, smiling and being her happy self. Plus Dawn got in some cuddles before surgery, which she wasn’t going to turn down for a second.
Finally the time came and we got escorted to the room just outside the OR. And we waiting again. This time it was very short. A wonderful O.R. nurse took a picture of the three of us (seen to the left, its early in the day and we look tired already) before we had to do the hard job of handing Norah into the nurses arms. Tears fell, but we knew that she was in God’s hands and that we where completely helpless to the situation. All we had was the comfort of our wonderful Saviour. But. This. was. hard.
Psalm 139:13, reminded us that God was in control and that He is a good God.
So the longest day truly began after this. Waiting.
We killed some time by getting some food. We were both starving, having been up since 5am and it was now 11am and felt like 1pm. So we went to get something to eat. Then out of nowhere Dawn had an allergic reaction to cashews. It came literally out of nowhere as she was eating an Italian Pannini. Who thought pesto sauce has cashews in it? Really? Thankful with some Benadryl and a little time she quickly began to feel better. Albeit still hungry having “lost” the food she ate for lunch, but having lost her appetite. I’m sure later tonight she will make up for it.
After lunch time seemed to go quickly all of a sudden, but then at around 4hrs time it just stopped. We waited, and we waited. Then after almost 5+ hours of waiting the surgeon walked in. Finally.
The surgeon was very happy with how things went. The hole in her heart (actually a VSD and a small ASD as well) was very large and was patched up, then he was able to look at the Pulmonary Valve and see that it is indeed very abnormal. They did a repair of the valve as well which added to the length of the surgery. He told us that they will have to monitor this valve over the course of her life and that there is a 10-20% chance that she will have to have surgery to repair it again as this repair could cause ‘leakage’ overtime. Not the news we wanted to hear, but he did say that she would led a normal life and be healthy and active. It could be decades later that she might need surgery again. So overall good news.
When the surgery was over, Norah’s heart is very strong and she came off the heart-lung bypass machine very well. The surgeon was very happy with this. We got to meet more of the nurses taking great care of Norah in the PICU and are getting to know them as in PICU there is a 1-1 ratio so the nurse is always at her side with us. Right now she is on a ventilator to help her breath and everything is looking good and they hope to take her off that tomorrow morning if all goes well over night.
Thank you for all your prayers. We really felt them today. This is the end of a very long day and we will rest peacefully.
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 😀 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!
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.
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!