Thursday, February 24, 2011

HAPPY DANCE!!!!

Last night, my little family had the BEST sleep in nearly 4 1/2 months! Why you ask? BECAUSE WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yesterday morning, I waited with MUCH anticipation for rounds. During rounds, they asked, "Does he have a fever?" - nope, "Is he tolerating his feeds?" - YUP! "Are you ready?" - SO READY!, "Okay, let's get you out of here!" - (Everyone's reaction)YESSSSSSSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr Mitchell, Noah's CV surgeon, came in to celebrate the great news with us. I signed the discharge papers, and we were ON OUR WAY! Let me tell you though, that morning before rounds took FOREVER!

SO... Noah is now home. Loving it too! He was a little cranky and very tired when we got home... only wanted me to hold him. But now, I think he realizes that no one here is going to bug him or poke him or prod him at all hours, day and night. He is LOVING his cousins and his cousins are very excited and happy to have "their baby" back. It is so sweet to watch them play with each other. Noah's strength and endurance isn't back to what it was before he was admitted... the boys are used to him rolling all over the place and sitting up on his own so it has been a little confusing to them as to why he is just laying there and barely rolling to his sides. But they love him and play with him just the same :) Benjamin even told me that he feels bad for Noah. I asked him why and he told me that he feels bad that he still has doctors. I told him that some day he won't need to see the doctors anymore. Then he said, "I am happy he is home."

Jonas is way excited too. Aunt Amanda was holding Noah while he was sleeping and Jonas comes over and sits on the arm of the couch and starts petting Noah's head. Then he said, "I just love Noah" and then he laid his head on his. So sweet :) I love how they love each other... it melts my heart.

Thank you all for your continued prayers. Please continue to pray for Noah, as he still has some recovery and rehab to go through. Prayers to keep us at home and healthy! And even though we ARE home, I will still update his blog once a week to keep you updated on his progress and how happy his life is :)
Tuesday, February 22, 2011
Last night was extremely difficult. Noah spiked a fever that would not come down with the Tylenol or Motrin. He was becoming dehydrated due to his vomiting. Last night they tried 4 times for an IV. At first they got a vein so they drew cultures off of it before they secured it. But before they could flush and secure it, the vein blew. We had him on Pedialyte all night in hopes to keep him hydrated, but that didn't seem to work... vomited ALL NIGHT LONG. He was so miserable. Couldn't sleep at all. Cried all night. Wanted me near but then pushed me away. I tried to hold him in the rocking chair as this has ALWAYS been the cure all, but he didn't even find THAT soothing. I cried with him. It hurts that I couldn't find the right thing to do to help him feel better. Then FINALLY at 5am his vomiting stopped. At 6am he started asking for water and by 7am, was finally sleeping. What a rough night.

Today has been better. His fever has been gone since early this morning. A little more happy and sleeping a lot. I don't blame him though.. I just predict tonight will be a wakeful night... but a happy wakeful night... at least on his part.. this momma is going to be very tired.

I can't remember if I mentioned this in the last post, but Noah had thrush a few days back and has since been getting nystatin. His mouth looks SO much better. The cultures they drew last night are positive for some kind of bacteria. Not really sure if it is a true positive culture or a contaminated culture. They re-drew cultures a couple hours ago just to be sure and was started on another antibiotic.

::sigh:: this weekend has been a REAL test of my patients... I can't wait till this is all over and we are a family who lives at home once again! Please pray our night is uneventful, and despite my prediction, a RESTFUL, sleeping night! Thanks!
Monday, February 14, 2011

Things I have learned from this stay.....

God made a Life Album for my little family. But sometimes He only lets me look at a few pages. He has already written our story and has chosen us to tell it a little bit at a time. We are not the authors so it is silly that we try to "write" our own paragraphs the way we want it to be. If we were given the pen, the ending of the story would be MUCH different and NOT as awesome and amazing as it would be with God's ending. We don't know what God has planned for us so it makes sense that us humans tend to freak out and try to do it on our own. God has already written it, we just need to play our parts and trust Him. Even when we are in our most vulnerable, scary, life changing moments, we need to give it to God. That is something that Aaron and I have encountered MANY MANY times these past 4 months alone. There have been many unbearable times when it was just Noah and I while Aaron had to go back to work. Many times have I been on the edge wanting to give up and think that I can't get through this another day. To watch your child struggle day in and day out. To not know if he was going to "wake up" to be himself. Watching his silents cries. Struggling with the doctors. Watching him struggle with every breath. It is all too much to do it alone. And even though we are in a pit of our struggles, that is when Satan attacks us even more. That is when my most desperate prayers are said. There is a song that I keep listening to and I feel it is our theme song. "Better Than a Hallelujah" Just listen to the words... they hit it spot on.


Other lessons I have learned are that sometimes God just needs you to ask. He WANTS you to ask! I have asked for simple everyday things. I have even given him a date of when I would want it answered. I prayed so long and hard for things that we tend to forget about.... Noah's smile for instance. I desperately prayed that God would let me see him smile just once by Christmas. I prayed for this because we still did not know if he had any brain damage from his cardiac arrest. It had been 40 days that we went with out a smile. God not only answered my request EARLY, but blessed me with way more than just one!


Ok... now for an update....

Noah is doing so well with his feeds! He is currently on 3/4 strength Pediasure and tomorrow they will go to full strength.
A few days ago, he had severe diarrhea with vomiting so they tested him for a bacterial sickness called c-diff. This puts him in isolation until the test came back negative. Unfortunately, it came back positive. So he was started on antibiotics and will remain in isolation for the remainder of this hospitalization. He already seems to be on the mend once the antibiotics were started.
His respiratory status has greatly improved this past week. He is now on a half liter of O2. They have also told us that we can give him breaks during the day.
More and more monitors are being removed because he is showing consistent stability! I LOVE it when they start taking stuff like this away!

Please pray for continued toleration of his feed. Pray for Aaron and I to get the rest we need. Pray for Noah's illness with the c-diff to go away quickly. Thank you!
Friday, February 11, 2011

We can see the light at the end of the tunnel....

Noah is doing extremely well. Beside him not tolerating feeds and a fever 2 days ago, we are getting so close to the end of this stay. This Tuesday will be exactly 4 months. **sigh**
Noah is on a regular nasal cannula now. His flow rate is a half a liter! The other day we actually had him off the O2 for about 12 or so hours and he did great! He would dip to the mid 80's and even lower when he became agitated, but for the most part he stayed above 90! This is HUGE! We are still going to be going home on O2 but at least he can have long breaks from it during the day. And as he grows and gets stronger, who knows, he could be totally off O2 by the end of the year maybe a little bit longer.
The discharge nurse came by today. She wanted to make sure she had all the right information for all his medical equipment and supplies we will have when he DOES come home. I can't wait for the day when he will not need ANY of it!
His feeds are the biggest struggle now. He will tolerate the formula for a few days and then start vomiting all day and night. We switched him to pedialyte for a couple days and he stopped vomiting... then back to the formula. Again, vomited all day and night. Back to pedialyte and today we are trying half strength Pediasure. They had had him on Neocate, which is supposed to be the most gentle formula out there, but I don't think it was sitting right with him. So hopefully him being back on his normal pediasure will work again. Please say LOUD prayers for this! We need him to show good consistent weight gain for us to be able to go H.O.M.E.
Since he has been vomiting so much lately, it has caused him to have diarrhea so I think they are going to test him for c-dif. :( That means isolation for a few days. But so far they have not tested him yet. We shall see.

Man, oh man. I am just drained from this stay. My body aches all over and I am SO ready to have our life at home back! It is time for Noah to come home! I want to end this update with good thoughts though. I am SO grateful for the family and friends that God has placed in our lives. We have so much support it is unbelievable! I am so very thankful for my fellow heart families. Together we encourage each other and give each other hope. And I thank God for the sweet smiles I am receiving from my Noah. God promised to give him back after all this and he has held true to that promise!
Saturday, February 5, 2011

Feeling kinda crumby...

I am exhausted. Between Noah vomiting and coming down with some kind of baby bug and both of us NOT sleeping this whole week, I am surprised my eyes are able to stay open. I feel on the verge of tears lately. I want to go home and I know it is getting closer but it is just not happening as fast as I would like. Sometimes it is just hard to wait. NO... all the time it is hard to wait. And to top it off, Aaron has not been able to see us since this past Monday and we still will not see him until next weekend! I will say this, though, I am SO glad that Noah was NOT home for that crazy blizzard! I would have been in a panic mode the whole time!

Alright... Now to get to the update....

Noah had been vomiting over night again 2 nights ago. He spiked a fever and had a heart rate over 160 so they drew labs. His white blood cell count was elevated but they have not started antibiotics this time. Today, he has only threw up a couple times. And as of this moment, he is napping peacefully. I do not believe he has an infection of any kind... I just think it is some kind of "normal" bug. Never the less, I can not stand to see my baby sick and miserable.
His high flow is being weaned down. He is currently on 3 liters of flow with 40% O2. They are going to come down on the O2 a little more and then come down on the flow as he tolerates it. He has gotten a little more congested the past couple of days, but again, I just think that is part of the bug.
They are going to keep him on 22 calorie Neocate formula as long as he is still gaining weight.
Still working on weaning him off his sedation meds.... still a long process with Noah. They are going slow with him just because of how bad he withdrawals if we go too fast.
I am going to end the update for now. Thank you all for your continued support and prayers.

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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Me and my boy :)

Dec. 6, 2010

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

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