Praise You In This Storm

I was sure by now that You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen" and it's still raining

As the thunder rolls I barely hear You whisper through the rain
"I'm with you"
And as your mercy falls I raise my hand and praise the God who gives
And takes away

I'll praise you in this storm and I will lift my hands
For You are who You are no matter where I am
Every tear I've cried You hold in your hand
You never left my side, and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry, You raised me up again
My strength is almost gone, how can I carry on
If I can't find You?

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

~Casting Crowns

My sister-in-law gave me a copy of this song when Noah was born. Yesterday I read the lyrics on my sister, Jamie's, blog and once again they touched me. Noah is continuing to spike high fevers again this evening. No word on the blood cultures yet but if we don't hear anything by tomorrow, then it's good news. So if this is just a virus, we are praying that Noah can fight this off soon so he can be well for his surgery next week.

"Sometimes God calms our storms. Sometimes he chooses to ride them with us."

ER Visit

Well, we ended up spending yesterday evening in the ER. We had gone to see our pediatrician for Noah's pre-op appointment. I mentioned to him that Noah had been having some low fevers, cough and runny nose since Wednesday afternoon. We figured it was likely just a cold, but when the pediatrician checked his temp he was 38.9C. So he decided we'd better head off to the ER for blood cultures, a CBC and a urine culture just to be sure. After thoroughly checking him out and waiting for blood results (all in all, about 5 hours), his CBC came back normal (his white count was great) and all looked ok, except for Noah's temp which kept climbing while we were there to 40.5C. The ER doctor preferred that we be admitted until Noah's blood culture results came back. But sitting in that ER, I couldn't bear the thought of going back in already, especially when his bloodwork looked so good. So after much pleading, debate and discussing it with the other docs, it was decided that we could come home. But if Noah begins to look worse or if his cultures come back positive (takes 48 hours to come back), then we will have to go be admitted.
So for the first time, we were actually able to go home from the ER! All the nurses were as shocked as I was. I told the doctor he was going to have to help me find the front door as we had never actually gone out of it before!
During the night, Noah's temp was still high, but this morning he is looking much better and just running a low grade fever. So hopefully this is all just a nasty virus that will pass quickly. We are praying that this line will last us one more week!! We desperately need this one more week at home!!

Our Little Vacation

This past weekend we packed the van literally to the brim and headed off to my parents cabin for a few days. It's amazing we didn't lose the kids amidst all the stuff we had to pack for Noah, but once we were there and unpacked, it was well worth the effort. The weather was beautiful and the kids got a chance to spend alot of time swimming and canoeing. Noah loved spending time out on the deck and his TPN even attracted the hummingbirds (wish I had gotten a picture of that one!). So I think we've found a new use for our leftover TPN (if only it didn't attract the wasps as well!).

This weekend made me realize just how quickly Kailyn and Joshua are growing up, and how much of it I have been missing. I continue to pray that their childhood is a positive experience and that the life lessons they take from all this will help them grow into stronger, more compassionate people.

Now we are back home, and already gearing up for Noah's next hospital stay. It seems that time these days is measured based on Noah's admissions. We are now 2 weeks post-hospital, and one week to go before we go back in. Noah's surgery is scheduled for Thursday, September 6th at 1:15pm to have his tunneled line placed. We don't know how long he will be in this time. Hopefully it will be a short stay. So I am frantically getting the kids ready for school, and making sure everything is in place for when I will once again be gone. I am really dreading it, but it will be nice to be rid of this femoral line.

Grand Beach

We were able to take a day trip to Grand Beach on Sunday. It worked out quite well with Noah's time off his TPN. We drove in the morning while he was still hooked up, and when we got there we were able to unhook him. We spent the afternoon there until it was time to hook him up again. The weather was absolutely beautiful and it was a wonderful relaxing day. I think everyone should go spend a few weeks of summer in hospital to truly appreciate the sun, beach and fresh air!!

Noah is weighing in at 5620grams (12lbs 5oz), and will be 23 months on Wednesday. Tomorrow we go for his regular TPN bloodwork.

Summer Days

Noah has been home for a couple of days now and we are trying to get as much enjoyment out of these last summer days as we can. I'm hoping for some nice hot weather yet! Noah loves the outdoors and spends lots of time in his swing or just sitting on the deck watching Kailyn & Joshua play. I am trying to just let go of so many things around the house and the yard that sit unfinished. Perhaps in another season of our lives they will become important again, but for now, family is our number one focus. I still haven't completely unpacked my bags from the hospital and it seems like I will never be able to. All the plans we make these days are very tentative as we know it is not a matter of if, but when the next ER visit will be. We are getting used to living life in crisis mode and unfortunately, our kids are getting used to hearing "if Noah's not in hospital, then maybe...". I know it's hard on them and they know far more about hospital life than any child should, but for them, this is the norm. I'm not sure any of us would know what to do with ourselves if things settled down for good. And so we just try to pack in as much as we can while Noah is at home.

In hospital we stopped Noah's tube feedings completely to give his gut a rest for a while. He seems to do better with tolerating his feeds if we rest his gut every so often. And he is always so much happier when we don't feed him. If only I could trade him my love of food for a while!! So we are doing full TPN 18 hours a day. This means he is fed everything he needs directly into his veins through his central line (technically the line he has right now is called a PICC). The tricky part about this is that for those 18 hrs each day, he is not very portable as he is attached to a big double pump and an IV pole. His time off is from noon until 6pm, so we try to plan our day around that time. Because of his hypoglycemia issues, right now this is the most time he will tolerate off the TPN. Next week we have an appointment with the Rehab Center for Children to see what they can come up with so we can attach his pumps to his stroller. The good news is that for now, Noah's liver seems to be tolerating the TPN and his triglycerides that were an issue before, now look great!

Because of the new clot Noah developed in July, we have to continue to anoxyparin injections twice a day until October. Noah is also on IV antibiotics again every 6 hours for another 4 weeks that we give him here at home. Once his antibiotics are done, he will have to go back into hospital for another surgery to reinsert a new more permanent central line in his chest, likely around the end of September. (IF we can get this line to last that long!) During that hospital stay, Noah's GJ tube will get reinserted as well and we will try to restart some tube feeding.
I've included some pictures of our last few days. Some of Bison Transport family day at the Winnipeg Stadium (Noah was not impressed with the dressed up Bomber characters), and our afternoon visiting Aunt Bertha in Steinbach.

Once again, a huge thank you to all of you who have been praying faithfully for us and for all the support we have recieved these past months. Thank you for the meals delivered to our house and for the coffees and treats brought to me in the hospital. We appreciate the reminders that we are not alone in this journey.

Home!

Noah came home today! He was supposed to be discharged yesterday, but decided to spike a fever Saturday night. His blood cultures came back negative today, so he was discharged. We will miss our CH5 family, but we are so glad to be home.

This is Brad writing to give an update on Noah and Nichole. Please continue to pray for Nichole and Noah as they have spent a lot of time in the hospital over the past while and Kailyn, Joshua, and I would love to have them home soon.

Noah is doing very well with his temporary femoral line and even ventures down to the hospital play room on a regular basis. Both he and Nichole are a great testimony to those at the hospital and we are thankful for those opportunities.

Kailyn and Joshua are learning a lot about hospital life and learning valuable lessons in patience and appreciating everyday the value of health and life. It is sometimes too easy to see the not so great side of being in the hospital for hundreds of days like Nichole has been. We shouldn't forget the miracle that Noah is, and the fact that we were told that he would never even live. Not only is he living, but loving life. God is good and knows what he is doing.

I also want to remind everyone what an awesome wife and mother Nichole is. She has spent over 225 days in the hospital with Noah over the past year. Although some people consider this routine and "normal" already, each day is as hard as the first and each night on the chair is as uncomfortable as they all are. I love Nichole and everything she does to be there for Noah and for the record...she never complains about the circumstances around it. I appreciate her very much!

There is a possibility of Noah being discharged next week if all goes well, so please pray that this can happen.

Brad

Trusting in the One

Noah had a new line put in on Friday, but unfortunately it was not the permanent one I had hoped that it would be. As there were no monitored beds available, the anesthesiologist was unwilling to give Noah any sedation. And so our surgeon decided that it would be best to put in another temporary femoral line until Noah has been treated for a while with antibiotics and we make sure he is completely infection free. So, under only local anesthetic, another femoral line was put in. Thankfully, the surgeon allowed me to stay in the OR with Noah the whole time, but it was a very rough time for both of us.

With his new line in place, Noah has been doing well, other than a cold that he's fighting at the moment. We pray that this line will last until we can get a new one placed. If it doesn't, we will be back to square one again. Talk of discharge is in the works. We are hoping to be able to get Noah home and come back into hospital after a few weeks of antibiotics to have his permanent central line put in. But because of the risks of a femoral line, we may be unable to be discharged into the home IV program. This would mean that Noah would be stuck in hospital until his new line could be put in. So lots of details to work out yet and the plan seems to change daily.

We are tired, discouraged and so ready to be home as a family. And our hearts have been very heavy this week for my sister and brother-in-law (Jamie & Erik) and Erik's family. Erik's brother Nathan died tragically last weekend. A grim reminder of how precious life is and how quickly and unexpectantly it can end. Nathan touched our lives and we take comfort in knowing that he was ready to meet his Maker. We can't help but ask "why" as we weep for those left behind to mourn his absence. In the fitting words of Nathan & Rosanna from a comment they left on our blog a few weeks ago "Trusting in the One who holds all our tomorrows." Our thoughts and prayers go out to you. Oh, how we wish we could be there with you!!