Monday, June 18, 2012

Three Years!

This Friday, the 22nd of June, our son will be turning three. Noah has changed and grown so much over the last three years. And while some milestones took a while, every step along the way has been worth our struggles and hard work. I am very proud of what Noah has accomplished and I cherish every moment spent with him. Did you know, medically, Noah should not be with us on Earth? God could have taken him to his heavenly home on November 5th, 2010. But God marveled everyone... his doctors, nurses, friends and family. Even Aaron and I. After the doctors revived Noah (his heart had been without a beat for 44 minutes) they kept telling us that Noah could have brain damage and that even though his body would be here, HE wouldn't. God started to show us that He was still in the Miracle business. December 14th, 2010 God gave us the first miracle.. in the form of a smile. A sweet precious smile that still gets the tears flowing every time I think back to that moment. It had been 40 days since we had saw ANY kind of reassurance that Noah was "still there". I like to think that God gave us that smile as a present from my late Grandmother Hilda. After all, it was her birthday. She would have loved him dearly.

So here we are. We still have 4 days left of having a 2 year old in our house. He has learned so much this past year. TONS of new words! His strength is still on the rise. He just learned how to crawl a month ago and he cruises along furniture. Just within the last 2 weeks, he has started to walk holding our hands, so ANY day now, he will be taking his first steps on his own. Oh, what a glorious day that will be!! He will be a true walking Miracle! I get all giddy just thinking about it! :)

This Saturday, we are having a party for Noah. Noah loves Mickey Mouse!! And what better way to celebrate his 3rd birthday, than to throw him a Mickey Mouse and Friends birthday party!! So much fun! I will be posting photos next week for you all to see! Until then, thank you everyone for the continued prayers and love!




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Friday, December 23, 2011

Time for a REALLY great update...

his month has had a few great accomplishments. The first being, Noah getting into the CVS (cyclic vomiting syndrome) clinic. He is now being seen by the top CVS specialist in the world! We now have some plans written down for prevention and rescues. Since then, I believe we have successfully prevented two cycles from happening/worsening!

There is a CVS Awareness walk this coming June in Milwaukee. A dear friend is planing to visit during this time and we are going to be walking for Noah!

Lately, Noah has been doing some amazing things. This past week, he has been pulling himself onto his knees using the coffee table. He is getting so strong! As of today, he has started pulling himself to stand! Here is the video to prove it..... :D



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Monday, November 21, 2011

First heart cath since December 2010....

11:30am - They took our sweet boy down to the cath lab. He got a generous dose of versed just before they took him through the doors. Funny how quickly those meds work!

1:20pm - First update: Intubation went very smoothly and he is breathing comfortably on the machine. They were able to get access through his subclavian!!! THANK YOU JESUS! They are now beginning to take pressure measurements and are going to test his lungs with nitric oxide, which is a vaso dilator, to see if his body is responsive and it will help with the pressures in his heart and lungs. Then they will test him with Sildenaifal to see if this will also benefit his heart and lungs.

1:50pm - They JUST finished the procedure! God is amazing and faithful! Noah did very well through the whole procedure and was stable throughout! They are now doing an ECHO while he is still sedated and then he will be brought back up to his room to recover! Now we are just waiting for the doctor to come up and talk to us about the results! Thank you Jesus for answered prayers!

Dr Gudaunsky, the heart cath doctor, said that the residual VSD is "significantly smaller that it was a year ago" and that he has "absolutely no pulmonary hypertension" PRAISE GOD!!!!!!!!!!!!!! His pressures in his heart are balanced beautifully and, in Dr G's words, "his heart is in the BEST condition it has EVER been!" AMEN!! He did say that his left pulmonary artery is a little narrower but not to the point of doing anything to it right now. They will talk to his cardiologist and see what she thinks would be the best approach to correcting it. But for now, he can go home and stay home for a while with no "planned admissions".

About 4 hours after Noah came back to his room, his nurse and I noticed his lower abdomen was distended and hard. It was concerning because when they put the arterial line in his groin, they had to go in a little higher than normal and that increases risks of bleeding into his body cavity... the main reason they are keeping him sedated and still until 6 hours after the cath was done. We had the ICU doctor come in and take a look at him and he said that it could be his bladder and told the nurse to straight cath him to see if he had urine. He said that if we didn't get any urine, then he would want a CT done. But, God answered our prayer again, and it was just his very full bladder. The nurse was able to get a little more than 100cc's out with the straight cath and about an hour later he peed on his own.

9:15pm - His sedation drip is now off and he is already trying to sit up. My boy is such a fighter! They will let him wake up more and at midnight they are going to start a pedialyte drip over night and then give him his first feed in the morning. We possibly could go home tomorrow, if not, Wednesday!!! In time for Thanksgiving!!

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Thursday, November 3, 2011

Caught off guard...

Earlier today, Noah had a cardiology evaluation with the heart cath doctor. He talked to us about Noah's case and whether he would be a candidate for a medication that could help with him coming off his O2. From the sound of it, he may not be. But before they would make any decisions, Noah will need a heart cath to determine if the med would actually work for him. They also need to get a better understanding of the pressures in his heart and lungs. This heart cath will most likely be scheduled before the end of the year. This is what caught me off guard today. I didn't think it would be so soon. But God is always in control and I need to keep reminding myself and relinquishing that control. Something else that was "mentioned" was the fact that the cath could possibly show a need for additional heart surgery. We are praying against this but if this is what needs to be done, then, again, we need to let God steer us in the right direction. It is FAR from "easy" to begin thinking of these coming plans. The information we received today, came with nervous feelings and a little sadness.

Tomorrow marks one year since the initial open heart surgery. I can not believe it has been a year already! And then, Saturday, marks a year since Noah's heart stopped beating for over 40 minutes. Look at how far he has come! God gave us a miracle! And to see Noah today, terrorizing our home and climbing into our entertainment center and learning new words... well, I have never witnessed anything more miraculous!
I love you, Noah Michael.
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Sunday, October 16, 2011

Been a while ...

It has been a while since I have updated on Noah. There has been a ton of things going on that I have been taking needed breaks from computer time.

I don't remember if I mentioned just how many times Noah was admitted last month, but He had a total of 6 admissions in 2 months. Always for his cyclic vomiting. It was getting very frustrating and sad. But now, he has been home for 3 weeks and is doing great! He has been consistently gaining weight and learning lots of new words! He is so close to being 23 pounds! It took us a LOOOONNNNNNNG time to get him to 22 pounds and now he is flying through. I am thinking growth spurt!

Noah now has a Power Port. This has been a true God send. With his new port, we are able to give him fluids right away when he gets into one of his CVS episodes. No more useless pokes! We also are able to get blood work much faster and easier. He gets his port accessed once a week for flushing to prevent it from clotting.

Noah has a stander for PT now. He is actually very tolerant of the device... as long as we distract him with his favorite movie or something.

This is helping build his legs and hip strength so that he will eventually be able to stand on his own. He had his second round of Botox injections last week for his foot drop. His foot is STILL bad and I am getting nervous that they will have to do surgery to fix it.

Noah had a cardiology appointment a few days ago. His last ECHO showed that the residual VSD is actually shunting both ways. This could be part of the reason he is still requiring O2. We also found out that there is a medication that could possibly take over the O2 need. The only thing about that is it could put him into heart failure. So, in a couple weeks he is going to be evaluated by Dr Kirkpatrick to see what tests need to be done. He will most likely need a heart cath next spring to measure the pressures in his heart.

So, now that fall is here, we are going to be keeping Noah home and away from company as much as possible. He has already developed a cough but hopefully it will not become anything more.

Well... I should get off for now. Hope all is well you everyone!

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Friday, August 26, 2011

Don't take life and family for granted

One of the many challenges for our family happens to be family portraits. I know, I know... with what we have been through these past two years, family portraits shouldn't be on this "list". But it is. And probably not in the way that immediately comes to your mind. What are YOUR challenges when it comes to this? Getting everyone to smile? Making sure everyone is looking in the same direction? Do we all match? No one is blinking? ...... For us, our only real challenge is making sure we are all there. All three of us. That is the only thing I truly care about. I have been trying and planing our family portraits for the last year and a half. Every time I would set a date, Noah ended up back in the hospital, so we needed to push it back further. ..... Until yesterday. Yesterday, we had the opportunity to meet up with one of my dear friends from MOPS. Her name is Stevie and she has 3 beautiful children and one handsome (I am SURE) little boy on the way. In fact, he is due to be born in just 3 weeks! SO.. we squeezed in our session. Stevie has been a blessing to me. When I was living at the hospital with Noah, she drove all the way up to get me and take me to lunch just so I could have a break. She has a big and generous heart and I am so blessed that God has placed her in my life. I love you Stevie!

So, without further ado, here are the beautiful photos she took of our family!







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Tuesday, August 23, 2011

So Blessed!

We want to make a huge shout out to Tracey, from Little Bitty Design Studio, for re-designing Noah's blog!! It is beautiful and JUST what I wanted! Thank you from the bottom of our Hearts!

If you would like you blog have a new look, please check out her page and let her know Noah's Mommy, Debi, sent you! You can find her by clicking her button on the right side of my page!!!

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About Me

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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My handsome men!
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Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

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