Thursday, March 25, 2010

It has been a few days...

Sorry for the long delay in updating!!
As I sit here to tell you all of Noah's progress, I am watching a very sweet baby boy tap his feet away watching cartoons. He is a very happy baby!! Funny what being able to breathe does for your mood! ;)
This week has been quite exciting. We are working on getting Noah out of this hospital and back HOME where he belongs! We are still waiting for the insurance approval for the at-home CPAP. Should hear about it at least by the weekend. Monday is the projected date to get our lives back to normal :) Please continue to pray no other road blocks will be in the way and that we can keep him home until his heart surgery in the fall!!
This past Sunday, Noah received his 5th dose of synagis (sp?) shot. :( He was a little more cranky a couple days later. He has been throwing up these past 3 days now, which COULD be a side effect from the shot. He seems to be feeling better today.
I think he is also working on his 3rd tooth! But for the most part he is a happy baby!
Noah has been LOVING his walks around the hospital and on the warmer days, OUTSIDE! He has also gotten to see his two cousins, Jonas and Benjamin. He was so excited to see and visit with them. Those boys will be happy when Noah finally comes home!
Well, I better get going... Noah wants to go for a walk :)
Friday, March 19, 2010

Laying out the plan

In about an hour, everyone will be meeting together for a care conference for Noah. We/they will be discussing what needs to happen in order to send him home, like his respiratory care (CPAP machine), getting him weened off meds, his future heart repair, etc. I am looking forward to this meeting because everyone will be on the same page and there will only be one plan!
Noah is doing SO great! PRAISE JESUS!!!!! He is doing so well with therapies, breathing, and oral feedings! Yesterday was the first time in almost 3 months, I was able to try feeding Noah by mouth again. It took him about ten minutes to remember what to do, then he got into a rhythm and downed 50 mls! Almost half his normal feeding! God is awesome! I have been praying/ worrying about oral feedings for a long time. But when Noah first tried yesterday, he ate like he had been doing it all along! So now I get to offer him a bottle for every feeding during the day and then at night he gets the continuous feedings through his g-tube. This is what his normal home routine was :) I am so excited and filled with JOY! Noah now weighs a little over 15 lbs 5 oz!! He is gaining weight so fast and getting stronger by the day! Aaron and I cannot wait to take him home!
I have been able to complete some of Noah's scrapbook. I have been having so much fun with it! I am, now, starting to plan out his first birthday celebration!!! I know... it is 3 months away!! But once he gets home, I am going to lose most of my downtime by playing with my wireless baby!! :D I can not wait to take him on walks everyday and get out in the sunshine! I am getting excited just dreaming about it!
Well, I gotta get off for now... time to feed Noah!!!!!! And then the conference!
Tuesday, March 16, 2010

Getting the ball rolling

WOW... Noah weighs 15 pounds now!!! He is SOOO chunky!!! And playful! Such a happy boy!
We are able to take Noah on walks around the unit now. So he gets 2 three hour breaks on the regular nasal cannula a day. Today during rounds, I kept getting the feeling that they are dragging their feet with Noah as far as weening him off CPAP. So... I asked them what their plan was to start on his night time CPAP because I want to TAKE HIM HOME! The doctor on this week, said we can send him home on CPAP for night time just not the high flow. WHAT?!?!!?! I thought the only thing he could go home on was O2!!! So now the paper work is started to get him approved to be sent home on CPAP and regular nasal canula during the day! It will still take at least a couple weeks to get approved but still... something got started today! My sister and mom came up this morning to visit us. They went on Noah's morning walk and got some cuddle time in. Then we went out for lunch, and what a gorgeous day it was today! 60 degree weather with the sun shining down! So beautiful! I can not wait until Noah can take walks outside!
Please continue to pray for Noah's breathing to keep improving. Also, pray for approval for Noah to be sent home on CPAP and that the insurance covers it! Thank you!!
Saturday, March 13, 2010

We Moved!!

We are back on the 5th floor! Still in the ICU but at least a "less critical" one. All his W5 nurses missed him... they all came by his room to visit and all commented on how much bigger he has gotten. He then began to FLIRT with them all! What a stinker!
Noah is doing phenomenal! He is now on high flow during the day with 1 one hour trial of just a regular nasal cannula and then CPAP at night. Once they know he can handle that, they will start weening him off the CPAP at night. And once he is on 24 hours of high flow, then they will work on getting him on just a nasal cannula. We are getting SO close!!! I can feel it!!! Please pray we have no more set backs!!
Noah is still gaining weight like a big boy!! He is SOOOO chunky now! His new weight this morning was 6.721 kgs (14 lbs 13 oz)
PT and OT are going great. His legs are getting more mobile and his head control is starting to improve. We are starting to work on rolling now too.
Thank you everyone for following us on this journey so far! Thank you for your continued prayers and support!! Please continue to pray for Noah progress to continue so we can get him home! ... for LONGER than a month and a half!!!!

This is a picture of his window... His primary night nurse drew it for him!! So sweet!
Wednesday, March 10, 2010

Another day has come and gone

This is one tough roller coaster we are on! But today was a GREAT day! Noah is doing AWESOME on the high flow breaks! He is starting to feel more like himself than the past 2 days. Tomorrow they are going to go up on how long he gets his breaks. He will now get 2 five hour breaks on high flow with only 2 hours of CPAP in between and then CPAP throughout the night. Then over the weekend he will be on high flow all day and then CPAP at night. I can sense our homecoming is approaching! Please pray that I am right!!! :)
Tomorrow morning, Noah will be weighed again. He has lost a little weight over the past few days. Most likely from throwing up that one day. Since then we have tried the lower calorie but with a higher volume and he is doing just fine. Please pray he has gained weight with this new change. Thank you all!

Also.... the site for Noah's benefit marathon is up and working!!! Please check it out!!
Tuesday, March 9, 2010

"Time is tickin' away, tick tick tickin' away"

Yesterday was not such a good day. Noah vomited 3 times and his heart rate was a little high. This morning during rounds, we changed his calorie from 27 to 24 to see if that helps. So far, so good. He is still a little "sad", not really his normal happy self all day. His urine output is a little lower than normal as well but still within a good range. He has not spiked any fevers which is great!
Physical therapy came by during his morning break from the CPAP. He is now getting 2 four hour breaks a day. PT was happy to see how much strength has returned in just a week. Last week he hardly moved his left leg. Today he was kickin' away! We started working on getting him to roll to the sides and back and he seems to want to do it on his own.
On his last break today, we cuddled and watched Up together. Then we both fell asleep for a good hour and half. He drooled ALL over my shirt!! LOL!
I forgot to mention... This morning I asked them when they thought he could go home... One of the responses was, "Not before Easter, that's for sure" :/ ... I am getting the impression we could be here until the beginning of May. Please pray he can come off the CPAP and highflow... this is basically the only thing keeping us here... well and him showing them he can tolerate his feeds and gain great weight. Thank you!
Sunday, March 7, 2010

So much progress to be thankful for!!

Noah is doing AWESOME! We are now giving him three hour breaks, three times a day from the CPAP. Every break he seems to be breathing a little easier each time! God is FAITHFUL!
They are working on weening his clonodine right now and sometimes he shows signs of withdrawal. They are taking their time with this though, which is good.
Noah is having great weight gain... He now weighs 6.425 kg which is 14.1 lbs!!!
We are doing our physical therapy at least once a day with him. He is still pretty weak and gets tired quickly, so please continue to pray for his muscle strength to improve.
Hopefully this Wednesday or by the end of this week we can have Noah off the CPAP all together. And then soon, off the high flow so we can take him on walks and get him out of this room for a bit everyday.
There isn't much else to update on right now...
There is a woman who will be running a marathon and the fundraising goes towards a savings account for Noah. When they have the website all set up, I will post a link on here.
Thank you EVERYONE for your unconditional love and prayers! Let's stay strong together!
Wednesday, March 3, 2010

Great day!!

Today has been an awesome day! We are now giving Noah 2 hour breaks from the CPAP and he is doing so well! He is on full feeds and up to 27 calorie count. He has started to gain a little weight and I can definitely tell his legs are getting the chunk back! :)
Noah's PICC line was taken out today, as he no longer needs it. I just LOVE it when they start to take away things like that! Noah and I got in some much needed snuggle time a little bit ago... we both snoozed for like an hour. It was so nice. :)
Noah also had another ultrasound done on his abdomen, but nothing was out of the ordinary. His numbers are all starting to go back to normal so that is awesome. His gut is also working VERY well... lol... He actually managed to get himself a bath and bed sheet change today! ;)
Right now, he is still on a break from the CPAP and is comfortable. But he will be put back on it in a few.
Thank you all for the prayers!! Please continue to pray for healing and strength for Noah. Please pray we can come home SOON!!! Thank you!!!
Monday, March 1, 2010

March 1st

Sorry for the delay in updates...
Noah has been doing quite well lately! He has been getting good amounts of sleep at night and VERY active and HAPPY these past few days! He is drooling like nobodys business and what does he have to show for it??? TWO teeth! He is getting so big! :)
Noah has not had a temperature in almost 4 days now. He is comfortable on the CPAP and tolerating his feeds... which he is now on FULL feeds as of today! Now we just need to see a weight gain! They are going up on his calorie intake so he should be gaining weight quickly. They are going to be turning off his milrinone drip today and taking him off the lipids later this week. He is already off the TPN which is good! And hopefully by the end of the week they can take out his central line!
The plan right now is to leave him on the CPAP for another week or two. They don't want him working too hard and lose valuable calories. They are giving him breaks from the CPAP still and every time gets a little easier for him.
Aaron is going back to work tomorrow and this is going to be very hard for me to get used to again. Aaron has been with us since Noah's surgery back in January. I am going to be alone most days again. Please pray that I don't become insanely bored! lol!

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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