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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You're All Set!

Happy Blogging!

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Monday, August 22, 2011

Yet ANOTHER stay...

Once again, Noah landed himself in the ICU for a few days. This past Thursday, he had a scheduled MRI as a follow up from his previous MRI back in December. We have not received the results yet, but this appointment triggered another vomiting episode. Although he is not "officially" diagnosed yet, they believe he has cyclic vomiting syndrome (CVS).

This month has been extremely stressful on Noah. He has had many tests and appointments this month and the traveling and changing of his routine and feed schedule has taken a toll on him. We are trying to find the right combination of meds/routines to help Noah with his CVS. Trying to eliminate the triggers as much as we can. Trying to find what works with his body as far as preventing another CVS episode or to lessen the severity of it. It is extremely difficult. It is very draining on Aaron and I, not to mention, Noah!

When we got admitted early morning on Friday, I knew Noah needed IV fluids. But with his IV access being impossible, I requested they not try for the IV and just go ahead and put a PICC line in. So, around 2:30 that afternoon, he went down to IR and had his PICC placed. They gave him Versed through the nose to calm his nerves and once he was in IR, they gave him an IM shot of Ketamine to sedate him. However, he had a delayed reaction to the Ketamine, so they gave him a second dose. When he came back to his room, he was still out and did not FULLY wake up until around 10 am Saturday morning!

They started him on a D10 drip (basically a sugar drip) and a few bolus' of saline fluids. The D10 was started to boost his sugar level... he was at 45. They also use D10 as a rescue fluid for patients with CVS. I think this will be one of our tricks for when he gets into one of his episodes.. giving his juice instead of just pedialyte.

So, anyway, Noah is being discharged today. He will be getting a dose of IV Zofran and then the PICC will be pulled. I can not wait to get home!
Saturday, August 13, 2011

A few hours that turned into an over night stay...

Noah was scheduled to have a broncoscopy, endoscopy, and an ECHO early Thursday morning. We had to be at Childrens by 6am to check in at Day Surgery. They got checked in and took vitals and such, then around 7:45am they took him back to the OR.

First, the pulmonary team did the broncoscopy. The went in through his nose and looked at his vocal cords to make sure they were functioning properly. Then they numbed the cords and pushed past them and into his trachea. Vocal cords look great and there was no inflammation. The trachea was not perfectly round like a "normal" trachea should be, but the good news is that it is improving and it no longer touches... it is just an oval shape. It does pulse, however, which means that his heart/vessels are still compressing his airways a bit, but nothing major as of now. He may later down the road need additional airway surgery to try to shift things around, but that all depends on how he grows. Then they went into his lungs through the bronchus. His left bronchus is still a tiny bit weak but that is also improving. They did find some fluid in his right lung that they washed out and sent to the labs to test. Other than that, the broncoscopy went without any hiccups.

Next, the GI team started the endoscopy. Again, they went through his nose and into his stomach. They did not have to intubate him for this procedure since he did so well with the broncoscopy. His esophagus looks great and there was no acid reflux damage noted so his reflux meds are doing their job. His fistula repair site is looking good... so no need for any dilation of the esophagus at this time. When they entered his stomach, they found a pancreatic rest, which is basically a pancreatic cell that has latched to his stomach wall and formed a nodule near the opening of his stomach. This may or may not be the cause of his sicklet vomiting, so they will be discussing another test/ultrasound in the future. Dr. Tipnis said he also wants to have a swallow study done soon since Noah is taking most of his formula by mouth.

After the endoscopy was done, the cardiology team came in to do the ECHO while he was still sleeping from the anesthesia. We do not have the results from the ECHO yet, so there is nothing to report from that at this time.

Noah came back to his recovery room about 9:30am and started waking up. We gave him about an hour before we tried a sippy cup but he threw it up right away. He threw up quite a few times and his O2 started dropping. We had to increase his O2 flow rate from a half liter to 3 liters. His heart rate was elevated and his breathing was fast. So they told us that they would be keeping him over night for observation. Up to West 5 we went. ::sigh:: Noah doesn't like to make things easy. BUT he did well over night and they sent us home around 9:45 the following morning. 27 hours... what should have been only 3 to 4 hours. Oh well. :)

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!

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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