Sorry my updates are starting to have some gaps between them. Most days lately it has been same news but other days I just don't want to write, mainly because I just don't want to relive the day.

I am very happy to let you all know that Noah is doing very well! He has been vomiting after every feed for the past week, and they tried many different strategies to help. Today, he has not vomited at all! Praise God! I needed today! I was getting so worn out and exhausted from Noah's constant vomiting and lack of sleep. I was literally only getting 2 hours total of "sleep" every night this past week. I think I have permanent bags under my eyes! But I am SO grateful for today! I am praying tonight is a smooth night as well.

A few days ago, they pulled Noah's PICC line. It had come back twice with multiple positive cultures which meant that the line was contaminated. It being gone also means that the Milrinone is no longer running... PRAISE GOD!! Noah's heart function is improving! He is no longer on any antibiotics either and has not had any fevers!

In the morning they are going to be drawing his weekly labs... the PICC line being gone means that they will have to poke him though :/ ... they are also going to have a chest x-ray. If the x-ray comes back with good results, then they will start weaning his high-flow. He is less junk these past couple of days and his voice is getting stronger. He is even starting to babble a bit :)

All great steps in the right direction! Please keep those prayers coming!!! Thank you!

So, Noah had positive cultures come back a few days ago. He is now on a round of antibiotics. He has been vomiting a ton in the past few days but is still well hydrated. My biggest worry about it is him aspirating. He had a scope done last week. They wanted to take a look at his vocal cords to determine if he had any paralysis. Both vocal cords were moving, however there is a small gap between the two from being intubated for so long. So with time, being short or a little bit longer, they should close. He has been playful and silly as well as very sensitive and whiny. I just can't wait till this is all over and he is back to being his normal happy self all the time!

The doctor is talking about moving us up to the 5th floor again pretty soon. Don't really know how soon though. Today I have been busy packing up our stuff in case they decide to move us in the middle of the night again! LOL Just kidding ;)

Sunday was a productive day. I "hosted" the first Childrens Clothing sewing party! My Aunt, Grandma, and cousins drove over from Michigan to help and visited with Noah. I also had my mom, sisters, and a couple sweet ladies who came to help as well. We started 4 different outfits that just need a couple more snaps and such before they can be washed and given to the ICU's. We even made 3 simple blankets. It was an overall successful party. I should have a few more "wrinkles" ironed out before the next party. I am still accepting donations of fabric and materials and even some to help sew. I am also taking brand new clothing that can be altered. If you would like to help or even host a sewing party in your neck of the woods, please send me an email at DebiLSolomon86@aol.com. Thank you to everyone who showed up and thank you to those who donated needed materials!!

Noah is 19 months old today! He is doing really great considering all he has been through these past few months. Thank you Jesus for this blessing.

We are coming up on 3 weeks post extubation. Noah is still on high-flow during the day and CPAP at night. However, last night when we put the CPAP on, he cried and cried and cried and would not settle. So I asked if we could leave it off for the night. He did better but still didn't sleep much. Today his respiratory rate is a little higher than usual. I hope that not having the CPAP on last night set him back any. I feel so helpless. He is getting his treatments 2 times a day. He is still very junky but he has a good cough to clear it for the most part. Last night he got his Synagis shot to protect him during the flu/cold season... he gets those once a month.

He is at full volume feeds now. We just need to work on getting him on full calories. But yesterday he had started throwing up. Not sure if this is from trying to go up in calories or if he is starting to come down with something. We are also letting him practice eating by mouth. It is a very slow process... when you have not been taking anything by mouth for over 2 months, you lose your natural skills. But progress is progress.

The milrinone has been weaned back down again. So far, so good. Hopefully we can get him off of it soon. They're going to take it a little slower, though. His renals are stable and his blood pressure is doing good. The weaning of his other drugs is going very well... we are getting close to having him off them! PRAISE GOD!

Noah got a big boy bed a couple nights ago! I was super excited because NOW I can get in there and cuddle with him! We both needed it! He loves it too... he plays with my eyelashes and falls asleep almost instantly. We even got to take him on a stroller walk around the unit yesterday. He of course enjoyed every second of it as well as us! :) Hopefully we will be back on the 5th floor next week!

Aaron and I have been doing okay. Aaron is back at work with the exception to part of this week. I really enjoy having him with us. We recently applies with an apartment a few weeks ago and a couple days ago we received the phone call saying we did not get approved. On to the next door to see if it will open....

Prayer requests:
For Noah's respiratory condition. He is breathing fast, even when sleeping. Please pray that he is not getting sick.
For his toleration of the higher calorie formula.
For his overall strength to improve.
Our apartment search.

Sorry for the long delay in updates. I didn't realize it had been a week since the last one.

Noah is doing great with his feeds. Tolerating them well! He is up to 35cc's an hour. They have even started letting him drink by mouth! He is still pretty weak so he gets tired easily but he was SO eager to get back to normal when he saw his speech therapist come in with his bottle! :) Friday, she is even going to start bringing him mashed potatoes with sour cream to practice with. He is going to LOVE it!!

Noah had a PICC line placed last week and has since then had his CVL pulled. He is no longer on antibiotics so the CVL was not needed. Plus, they don't like to leave CVL's in as long as he has had his. His sedation meds have been switched to oral meds. He is still doing well with the wean.

They tried weaning the Milrinon (heart med) but have gone back to the original dosing. Hopefully we can get his switched to Captopril so we can get closer to taking the PICC line out.

WHEN Noah gets sent home, we will be coming home with CPAP again and a new machine.... the vest therapy machine. Praying he won't need them for long. But we are still a little ways out before they start mentioning the "H" word.

There is a lot more information but I am too tired to remember it! Hoefully it will come to me in the morning. Good night all! And thank you for keeping Noah in your prayers.

Enjoy this video of my sweet boy!!!

Noah did not get a heart cath today... THANK YOU JESUS!! He has now been extubated for a week and is doing great! He is still on CPAP but is given one 2-3 hour break onto high-flow during the day. Even with the breaks he is breathing comfortably. Hopefully soon we can get him on the high-flow.
We have restarted feeds today. So far, so good. He is only at 3 cc's an hour but it is a start. Surgery told the ICU doctors to stop checking his lipase (pancreatic enzymes) as they feel it is just a number. If he were to show signs of discomfort, vomiting, distended belly, etc. then they should check it again. So... Pray that us feeding keeps going in the right direction so that we can get him to full volume feeds again and off the TPN and lipids.
The weaning of his sedation meds is going well. He is still sleeping quite a bit, but is more and more responsive to us. He is very weak still from being bed ridden for 2 1/2 months but every day he gets a little bit more strength back. He has not started saying his usual babble and talk... still coos here and there. I can't wait to hear him jabber again :) I am praying to hear him call me Momma again, soon.
His cough is getting a lot stronger. He is clearing more and more secretions and they are getting a lot more out when suctioning him. His lungs are getting better every day.

Please continue to pray that we can get him off CPAP soon and onto high-flow and then on his home O2.
Pray for his feeds to go well so we can start increasing the volume so we can get him off the TPN and lipids.
Please pray for Aaron and I that we will not miss each other too badly and that we can all three of us, be home TOGETHER soon!

** A reminder for those who are wanting to help with the Clothing for Childrens... I will be reserving a conference room here to have a "sewing party". I would love to have input as to a good day to have one. I am thinking Sunday's would be best?? For those who do not sew but want to help, we need pattern cutters!! Please email me at DebiLSolomon86@aol.com for more information. I am also taking material donations or Joann gift cards!! Thanks!

Noah had 2 really great days... Until this morning. His heart rate was in the 180s for a few hours and a high temp. He has been cultured to rule out a new infection. Results still pending. In the mean time, they have added 1 or 2 more antibiotics. They also gave him albumen because they were thinking he could also be dry. This helped his heart rate come down a little. They have also restarted the epi. They held off on giving him any breaks from the CPAP. Hopefully we can start those again tomorrow. His pancreatic enzymes have gone up even more... now he is in the 1200's. But we are not feeding him so it really is a mystery as to why. Dr. Arca (general surgeon) came in today to discuss what she thinks we should do. She said that we should just feed him as long as he is not in any discomfort. So tomorrow, we should be starting feeds again.
After the rough start to the day, Noah has gotten better. He still has a little temp but the Tylenol seems to be helping. Some of my family came to visit us today. It was good to see them all. And great for them to see Noah's improvement. Aaron FINALLY has gone home. He goes back to work in the morning. Bright and early. I was and still am very sad that he had to go but we need this. I just need prayers that we can be a family at HOME very soon. PLEASE!

Noah was extubated yesterday!!!!!! He is doing great! It is so cute to hear his weak little coo's. His cough has already gotten stronger in just 24 hours. This is great because he can clear more secretions. He still needs a lot of suctioning, though, but he is doing really good! He is on CPAP for now. Once he shows signs of more airway strength, they will start to transition him to highflow. Once on highflow, he will be more mobile!! Then once he is tolerating the highflow, they will transition him back to his home O2! We are so excited! He still has a ways to go, but look at how far he has come!!!!!
The next challenge will be feeding him. The GI doctors want his pancreatic enzymes to be at or below 300 for at least 3 days before we try feeding him. Yesterday, he was in the 300's. Today, they are in the 400's. Please pray that these level out and stay at the normal range. I REALLY want to get back to feeding him!
He is doing great with the weaning of the sedations. He still is going through withdrawals but they are NOTHING compared to last week! We have a better control of them. PRAISE GOD!!!!!!!!!!!!!

Please continue to pray for complete healing in Noah. Pray for his airways to clear and the transition back to his home O2 to be quick and smooth! Please pray for our living situation and that God leads us where he wants us to be. Thank you :)

A couple days ago, I was inspired to make clothes for the patients at Childrens Hospital. I am in the process of designing clothing that meets the medical needs of the kids but also looks super cute and fun. Noah has been naked almost half his little life and there are plenty of outfits he never got to wear because of him being in the hospital for long periods of time. There are a lot more kids in the same situation and I want to help! I am wanting to make this inspiration a reality and I am going to need a lot of help! If you are interested in helping with this project (i.e. donating needed materials, sewing outfits together, cutting out patterns, etc.) please email me at DebiLSolomon86@aol.com for more information. Thank you!!

This week has been and still is a busy one for Noah as far as testing goes. Yesterday he had a MRCP done, basically a MRI of his pancreas. His enzymes go up whenever we start feeding him so they are trying to figure out why. Still waiting on the results and we can't try feeding him until they do. Today they are taking him down to one dose of Troperidol (sedation med) and if he does not require a dose between now and tomorrow, they will plan on extubating him tomorrow. If he does get another dose then they will plan on Friday for extubation. If we can successfully get the breathing tube out this week then he will not get a heart cath. So please send up LOTS of LOUD prayers that the breathing tube can come out and STAY out!
Noah has been more awake and a little playful these past couple of days. My mom and sister came up to visit yesterday and they got to see him in a playful mood. It was good for them to see him like this. Every time family has come up this past month to visit, he has not been doing so well. It is good for them to see these big improvements. I also got to hold Noah for a little bit a couple days ago. It didn't last as long as I would have liked because he started getting agitated. But I am still thankful none the less. ANY second I get to cuddle with my boy is treasured.... I am just selfish and want more! lol
I am home today. Aaron is up at Childrens with Noah and then I will come back tomorrow. Aaron is going back to work on the 9th. I REALLY hope we do not run into any more "mistakes" with his paperwork being sent in. We REALLY need him to go back to work now. We need our income back so that we can apply to a new apartment complex. Please pray for this situation.

Prayer requests:
Noah to be extubated successfully tomorrow so he will not have to have a heart cath.
For his MRCP results to show answers so we can start feeding him without his enzymes going up.
Pray for Aaron's work situation so he can get back on the schedule.
For our living situation.

Thank you

Since Noah's latest heart surgery, he has been on a sedation drug that he has not been on in over a year. The last time he was on this med, he had an adverse reaction to it. We told them that this med is not doing any good for him at all, but they were sure we were wrong. Last night was the worst. I had the doctor paged more 5 times within a couple hours to tell them this drug is making him worse. She kept telling me that she wanted his temp and heart rate to come down before they shut it off. Noah has not slept in 3 or more days. Last night he was crying tears he was so miserable. Finally I had had way more than enough and I told his nurse that I felt like I was going to explode if the doctor told me no one more time... so she went to find her but she was no where in sight so the nurse talked to the fellow. The follow comes in and I told him that I want it turned off and he said, "I agree, we are just going to turn it off. This isn't doing anything good for him." THANK YOU! And I will say, within 2 MINUTES Noah was calm and his crying had stopped! I wanted to tell the doctor that I told her so! I have yet to see her in the halls. I wonder if she will ever apologize for not listening. Anyway...

Since we have stopped Noah's feeds, his pancreatic enzymes have trended down. We are waiting on a set of labs before we try feeding him or get an MRI.
His white blood cell count is still going up and his fever curve is still high. He is on a couple antibiotics to get rid of the infection.
As far as respiratory, we have restarted his 3 one hour trials of CPAP support through the ventilator. Hopefully his airway will get stronger and we can finally plan of extubating him. I can't wait to hear his voice again. Yesterday, a friend of ours, who is also here with her one of her kids, stopped by our room to chat. She had her little boy with her and he is a month younger than Noah. She was playing with him and all of the sudden I heard him giggle. It was awesome because as soon as he giggled, my body felt like a jolt of electricity or something similar started in my heart and radiated out to my fingers and toes. It has been a while since I have hear a laughter like that. It gave me hope and made my heart warm up a bit. Something I REALLY needed yesterday! So, thank you Finn!

Right now, Noah is getting a bath. He is really relaxed and calm. It is a breath of fresh air to get a break from the misery we were all in.