Well today was abit of a whirlwind. We decided to take Libby with us to Norah’s appointment with the cardiologist. The problem was relying alittle too much on Libby waking us up in the morning. Therefore, when Libby slept in till 9:30am and we had an appointment at the hospital at 10am we were abit rushed out the door. Somehow we got two kids ready, gave Norah some meds, got a bottle ready, and out the door to the hospital and through admitting in 35mins!
Norah’s checkup revealed much the same as it has always been. There hasn’t been any change in the hole in Norah’s heart and for the first time the cardiologist told us that it would require surgery. The nurses and other health professionals had been hinting towards surgery for quite awhile, but the cardiologist had still been hesitant to say those words until he was sure. This was the first time the cardiologist didn’t increase her meds, but this is because she is at the highest dose that they would give her. We have been told that they will most likely do surgery when she is 4-6months old, which would be sometime after February. However, she is still having trouble gaining weight. This is the area they are most concerned with. So we have increased the formula we mix in her bottles in an effort to add more calories. We will monitor her weight gain over the holidays and if things don’t progress like they should, then we will have no choice but to use a feeding tube. Please pray that Norah can gain weight without having to use a feeding tube. We are desperate to do whatever we can to avoid this. They have also said that if her weight gain becomes a bigger issue that they will also have to think about pushing up the surgery.
We have been blessed with great care from the staff at the Pediatric Cardiology department at RUH. They are actually connected in a network of other departments like theirs from all across Western Canada. They meet weekly via video conference to discuss cases before they get to surgery. This next week, Norah will become part of that discussion. So now we have not just one expert cardiologist but a whole group from around Canada talking about Norah. This group is who will ultimately recommend when Norah gets surgery. We are so thankful for these people and the skills God has blessed them with.
So we will go into the holidays knowing she will get surgery and doing everything we can to get her to gain weight. All the pumping, feeding, and medications with a long stretch between now and Jan 4, when our next appointment with the cardiologist will be, could add up to a stressful Christmas. We are thankful that we where able to purchase a very nice electric pump which has made all this quite abit easier. Through all of this we know that God has everything under control. Despite everything we can say that we have peace. While it has been hard and will continue to try on us, we know who is in control. We also are very thankful to all our friends and family for your prayers. Until next time.
Just a short update on our cute little bundle. Thursday marked another return to the hospital as her meds got increased yet again. In the process she got weighed and checked over again. This time we got the news that she wasn’t gaining as much weight as she should be, even with the supplemental feedings from a bottle. As well her breathing had increased again. They would like it to be about 45-50 breathes per minute and her’s was up over 85+. Yikes! They might have to look at changes her meds again when we see the cardiologist again next week. Her little body is just working so hard that she doesn’t have the energy to breast feed naturally. If she doesn’t start gaining weight than they might have to look at giving her a feeding tube. We really want to do everything we can to avoid that. So we have switched to feeding her from the bottle all the time. However, this means Dawn had to pump ALL the time. Therefore we had no choice (unless Dawn wanted to gain huge forearms from using a manual pump) but to buy a very expensive pump. During the months ahead it will get a ton of use and it will also help Dawn to maintain her supply so she could return to breast feeding when the heart issue is fixed. It will be great to have this pump, but financially this was the worst time for this. With Christmas season here, house in the middle of renovations, it wasn’t the best timing. But we know that God will provide as He always has in the past. Please continue to pray that Norah would gain weight and that the God would give us peace and rest. It continues to take its toll on us; especially Dawn. Between pumping every few hours, feedings, medication, the stress of what’s going on and Libby; she finds it very exhausting and is constantly looking for ways to find a nap. On top of that we have been averaging 3 appointments per week. However, I am constantly amazed at my amazing wife. Somehow in between all this she has managed to bake TONS of cookies and Christmas goodies! She deserves the “Mom of the Year” award.
As always we continue to be thankful to all our friends for their support. We will continue to lean on you.
In His Service…
I don’t think I’ve said it here often enough, but I really love my job at Ranger Lake Bible Camp. One of the biggest part of my jobs is being in charge of all things creative. Like a Creative Director. Anyways, as we are gearing up for the summer of 2010 I have been busy lately getting posters, brochures, t-shirts and the like ready for promotion. I am very pleased with this years design and with the theme of Believe. Here is the official desktop wallpaper that shows off the design. It is from this design that all my other designs will take their influence. I decided this year to go with a much more typographic treatment as compared to the heavy graphic components of last years theme. You can download the wallpapers for your desktop and iPhone/Touch below.
As we look to our theme, what is something you believe in?
1024×768 / 1280×800 / 1280×1024 / 1440×900 / 1920×1200 / iPhone/Touch
The journey on Norah continues, read the whole story here if you haven’t yet.
So today was another appointment for Norah at the cardiologist. She got weighed again, got another ultrasound/ECHO to checkout how her heart is doing. Not much has changed with her heart. In fact, they believe she has another very small heart issue, however, this other problem is actually benefiting her by lessening the issues caused by the hole in her heart. This other small problem isn’t something they are concerned about and aren’t even treating it. So it’s kind of a blessing in surprise.
So with no change they are once again going to up her medication as well as we are increasing supplemental feeds to help her continue to gain weight. From her previous checkup she had gained weight, just not as much as previous. We got alittle bit more of an answer about possibility of surgery, but the answer was “we’ll wait till January to decide”, so it was really just prolonging this, but it does give more chance to allow her body to “fix” itself so she still has a chance of not needing surgery. So right now we will continue to give medications, extra feedings, extra doctors appointments, extra everything it seems. We are really getting exhausted and could use a night of really good sleep. Please continue to pray for our energy and stress levels as it is all still overwhelming even as it has set in.
The last “fun” thing is that we found out this week about RSV. Before this week I had never even heard of this. Anyways, RSV is basically a type of cold virus. In fact, many adults, and children have had RSV or have at least been a carrier of it without knowing it. They probably just treated it like any other cold. However, to an infant with a Congenital Heart Defect catching RSV could be rather life-threatening. So if you are around us and have a cold we won’t let you hold her. Sorry, it’s not your fault, but Norah could get really sick from you. Don’t take it personally, but our kid is MUCH more important than your feelings. I’m sure you’ll all understand. The good news is that she can be immunized against it. Thankfully Sask Health covers this immunization if your child is “at-risk” like Norah, otherwise it costs $1000 per shot and she will need it every month, especially during cold/flu season. Thanks Universal Health Care!
Thank you to everyone for your prayers and support. As this journey continues we know that we will need more of your prayers and support and know that our wonderful friends will be there for us when we need it.
So it looks like this might be the colour for the guys shirt and the girls shirt will stay the same as originally posted.
Just a quick follow-up to my previous post. I mentioned the possibilities of there being tshirts for sale to raise money for adoption. Well, here are the first mockup images of what the tees could look like. I am really excited about this as I am told that there are numerous other families in much the same situation as Darrell and Jessica that would appreciate these shirts as well. I am excited that Poetic Industries work could help people again as it has been awhile since the first Watoto Project and the shirts that got printed then.
While these shirts aren’t for sale just yet, if you would like to buy one please comment and I’ll make sure to let you know when they become available.
Some good friends of ours, Darrell and Jessica Braun, are currently in the process of adopting twin girls from Ghana. I am helping where I can with this great event and would love to see you all out on January 9th, 2010. Even if you don’t know them, you can come hear a great band, eat some Steak and bid in the silent auction and know that you are supporting a great cause. Adoption is such a wonderful thing, in fact I believe that more of us need to adopt, but I won’t get into that now. Please check out the facebook page for info. Oh, and I almost forgot to mention, one of my ways of helping was to design this poster. What do you think of it? Would you buy it if the graphic was re-purposed for a t-shirt?
First off, I must say that we are extremely thankful for the overwhelming support and prayers. After last weeks post we have received an outpouring of prayers for Norah. We are feeling those effects. For what should be a much more stressful time, God seems to continue to grant us His peace as we watch over Norah. So we know that many people will continue to pray and will be looking for updates, so I will try to do that here.
Today was another check up with the cardiologist. We learned that one of the medications is doing its job and is allowing Norah to breathe much easier. However, the size of the hole in her heart hasn’t changed. In fact it may be bigger than they thought. We got an answered to our biggest question… “How long will they try medication before we have to look at surgery?” The answer we got, about 1 month. They increased the dose of one of the medications and we will continue with regular checks to monitor what’s going on, but if nothing changes in the next few weeks then we will move on to surgery. Please pray that God would work a miracle and close up the hole in her heart. While the surgery is “safe” and “common” we would love to avoid it if possible.
Related to Norah’s heart is her growth. She hasn’t been gaining weight due to the extra strain her body is going through and we will be starting to supplement her feedings to help her gain weight. Pray that she will quickly adapt to this new feeding and that all the extra work Dawn has to put into feedings would be as stress free as possible.
Again, we are so thankful for your prayers and support. May God be Glorified!
Inspired by maxvoltar.com and seen on Faraway, So Close
A simple game: Go to the address bar in your favorite browser, and type one letter. Start with “a”, end with “z”.
Here’s my list along with a brief explanation of some of the more obscure sites that some of you may not be familiar with:
Looks like I am geekier than I thought. Although it should be noted that I took these from my computer at work and not home. I am willing to bet it would look different at home, however, then it might have sites my wife looks at like this dumb one.
Feel free to add some of yours in the comments or send me a link to your list on your blog.
Just wanted to let all my readers aware of something significant in our lives. Something that is impacting our family right now and something that needs your prayers. On Monday we had a appointment with a pediatric cardiologist. We had been referred to meet with the specialist because our family doctor had noticed what they call, a “noisy heart.” Our doctor was unsure if it was just a loud murmur or what, so off we went. So on Monday the cardiologist did an ultrasound of Norah’s heart and a few other tests. (Thankfully Norah was a pro star during all the tests) They have determined that Norah has a hole in her heart. For those medically in the know, its a VSD. Needless to say this came at abit of a surprise to us, however, we are told it isn’t uncommon. Right now she is on some medication which hopefully will help. But if these drugs don’t work, then she will have to goto Edmonton for open heart surgery. (Which again we are told isn’t uncommon) We are told the surgery is done quite abit and is very low risk. But if you have kids, then you know that open heart surgery on one of your kids is the furthest thing from what you want for your kids. We have another appointment next Monday to see how the medication is working. Please pray with us that the hole in her heart would close and that God would protect her through this. Pray as well for our family during this stressful time.