Halloween Fun

A few pictures of our Halloween night. No, Noah didn't get to go trick or treating, he stayed behind with Doris, our home care nurse. But we did have to get him dressed up to snap a couple of pictures!

Rainbow

We have made it through a tough week here at home, each day expecting that we would have to take Noah in and not knowing how things were going to go. The ups and downs are so difficult and I find it even worse than if he would just get sick quickly, get admitted and get it over with! How crazy that sounds, but living in this waiting with our bags packed is just as awful. However, it looks like we may have actually waited this thing out! The Septra must be doing something, because Noah is much improved since yesterday. Still has a bit of a nasty cough and I'm wondering if perhaps this may have been RSV he's been fighting or maybe a viral pneumonia. But whatever it is or was, things are finally looking up here and I think we can actually see the rainbow peeking out of this lastest storm! I may even be able to unpack today! His stoma sight is looking really bad lately too because of all the coughing and extra drainage. So we are stopping his tube feeds for now and will reassess next week as to whether we will start them again.

Noah spent most of the week sleeping on the living room floor and the kitten rarely left his side!

Kailyn & Joshua are really looking forward to Halloween so I am so thankful that it looks like I will be here with them tomorrow. Brad is leaving for a conference in Florida tomorrow as well, so my mom is coming to be my backup help! Oh how I wish Noah was stable enough that we could go with him! Hopefully we have a quiet week around here while he is gone.

We did manage to take the kids to Boo at the Zoo on Thursday. It was a beautiful night and everyone oogled over Noah. Although as you can see from the pictures, he didn't look so great. He was quite fascinated by it all though!

Bring The Rain

Seems we are in a holding pattern here. A week since my last post and still the same symptoms continue on, with the low fever coming and going with no rhyme or reason. But Noah is holding his own and is actually quite happy despite it all, and so for now we wait... I'm feeling like we are on pins and needles as we wait for this to turn into something serious enough to head off to the ER. And so I have gotten the kids ready for halloween and I'm trying to finish up all the little things around here in case we go in again. Praying that I'm wrong though and that we can beat this one out of hospital. Brad was up in the Arctic Circle doing training this past weekend and got snowed in an extra day. So now that he is home I can breathe a little easier that we can manage if Noah does go back in.

I heard a song last week that summed up so beautifully the way I have been feeling. Somehow we feel that bad things only happen to other people and we have this feeling of entitlement to a happy, healthy life. But then the rain comes, and we are forced to make a choice. It may not be an easy choice, and we may have to choose over and over each day. We can choose to live a bitter, resentful life, hating the clouds, the wet, the cold...Or we can choose to embrace the rain...be thankful for the rain...love the rain. For we know that in the grand scheme of things, what's a little rain??

Bring The Rain

I can count a million times

People asking me how I

Can praise You with all that I’ve gone through

The question just amazes me

Can circumstances possibly

Change who I forever am in You

Maybe since my life was changed

Long before these rainy days

It’s never really ever crossed my mind

To turn my back on you, oh Lord

My only shelter from the storm

But instead I draw closer through these times

So I pray

Bring me joy, bring me peace

Bring the chance to be free

Bring me anything that brings You glory

And I know there’ll be days

When this life brings me pain

But if that’s what it takes to praise You

Jesus, bring the rain

I am Yours regardless of

The dark clouds that may loom above

Because You are much greater than my pain

You who made a way for me

By suffering Your destiny

So tell me what’s a little rain

So I pray

Holy, holy, holy

Is the Lord God Almighty

~Mercy Me

To listen to the song, check out this link http://youtube.com/watch?v=ElISFieaukc

Stable Here

No fever this morning, just lots of cough symtoms. Hoping the Septra will keep this from turning into pneumonia. Although it is giving Noah some wicked bowel issues, so I'm unsure if he is actually absorbing any of it. So for now, things seem stable here.

And so it continues...

Noah has been home just over a week now. He finished his IV antibiotics on Friday, so now we have started a prophylactic broad spectrum antibiotic (Septra) once a day through his GJ tube. Our hope is that this will help prevent some of these constant reoccuring infections. But this evening he is already running a low grade fever and coughing up lots of junk. Praying it doesn't turn into anything serious. Although already in my mind I am planning out how the week will go if he ends up in hospital. I just feel tired thinking about another possible admission. I think emotionally, each time gets tougher than the last. And yet, Noah is so worth it all and I would do it all a thousand times over just to have him in our lives. In the midst of the struggle of accepting that this constant upheaval from home to hospital is our life, comes great blessings in our beautiful son.

And so our precarious life continues...


"Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is least among you all--he is the greatest."

Luke 9:48

Our Household Is Growing...

As if we didn't have enough going on!



During my pregnancy with Noah, we got a kitten to give us all something to focus on, other than the dark days of waiting. After Noah was born, and we were spending all our time in NICU, our neighbors took the kitten in and loved it so well that it refused to come home again. We told the kids that someday when things settled down we would get another one. Well, Grandma & Grandpa had some kittens on the farm...the kids were in love...and life is never going to settle down...so it was time. I have to admit, she is quite adorable. And pets are supposed to be therapeutic, right?

Noah's introduction to the kitten...

At first... with big sister, it was kind of fun...

But alone with the kitten...

...he was less than thrilled.

Welcome Judah Daniel!

Welcome baby boy! What better way to bring in the thanksgiving weekend! On Friday, October 5th, after a very long wait, we welcomed a new nephew/cousin, Judah Daniel. At 9lbs 4oz, he is a big, healthy boy! Congratulations to Joel & Laura. We praise God for his safe arrival and look forward to meeting him in person! To see more pictures, take a peek at their website:
http://wayofthelordministries.blogspot.com/

On this Thanksgiving we are so thankful for family and friends. We thank God that we can be at home. We are thankful for Children's Hospital and the wonderful staff who love our son. We are thankful for livegiving TPN, lines, tubes, oxygen, medications, and for a healthcare system that allows us to focus on Noah, rather than bills, insurance issues and bankruptcy. And most of all we are thankful for Noah's smiles, happy disposition and fighting spirit through it all!

Birthday Pictures

You're a little piece of heaven

You're a golden ray of light

And I wish I could protect you

From the worries of this life

But if there's one thing I could tell you

It's no matter what you do

Hold to Jesus

He's holding on to you

The world will try to tell you

That might is more than right

That beauty's on the outside

And being good's a losing fight

But remember what I've told you

Because the world will make you choose

Hold to Jesus

He's holding on to you

Hold on to Jesus

Cling to His love

Rest deep in His mercy

Whenever things get rough

Don't lose sight of His goodness
And don't ever doubt this truth

That when you hold on to Jesus

He's holding on to you

Hear me dear Jesus

Rock this little one to sleep

Keep him close when he's scared

And give him grace when he's weak

I know he'll stumble
But I know he'll make it through

If You hold to him just like You said You'd do

Hold him, Jesus

So he'll hold on tight to You

~Brad O'Donnell

Home!

Noah had his scan done today, which came back clean. So he was officially discharged this afternoon and we are home again! Noah is looking great and we are so happy to finally be home! He will be on IV Cloxacillin every 6 hours for another week and then we are going to try giving prophalactic Septra three times a week (an antibiotic through his GJ tube). This will be in the hopes of preventing infections. However, there are risks of growing "superbugs" with long term antibiotic use that would be much more difficult to treat. We are going to give it a try for now though.
Our ID doctor today told us that there is a 50% chance of this Staph infection reoccurring in this line. Not great odds, but hopefully we will get a bit more time out of this line yet before we will be forced to change it.

Home on Pass

Good news! We are at home tonight on a pass from hospital. Noah has to go back tomorrow morning for his WBC scan, and as long as it comes back normal, then he will officially be discharged tomorrow. His last blood cultures came back negative, and his bone scan was normal. He also hit 14lbs today and is just shy of 27 inches long.

Our team meeting on Monday went well. It was decided that we will try to save this line as long as possible since we now have negative cultures and our one lumen is working well. And the general conclusion from everyone was that Noah is line & TPN dependant for the present time. The risks and complications of having the line are high, but when you see the energy, the development, the weight gain and the increased comfort level for Noah on TPN, it's difficult to justify going back to just tube feeding. Without his line, Noah likely wouldn't have much of a chance at life if he can't absorb nutrients, fat and sugar properly. So even though the line complications could potentially end his line too, it still seems like his best chance. We've never really figured out exactly what is wrong with Noah's gut and why we can't make it work normally. All the tests and xrays we've done have come back normal. So on paper, it looks like there is absolutely no problems, and yet things just don't work right.

So, hopefully the news will be good tomorrow and we will be out of hospital and home for Thanksgiving. Thank you to all for your continued prayers and support. Even though we may not say it enough, we appreciate the visits, the coffees and treats. These gestures mean so much to us!

Jesus love me this I know

For the Bible tells me so

Little ones to Him belong

They are weak but He is strong