Noah did very well during his heart cath today. Thank you for praying for his safety and for us. The news we got is not what we were "wanting" to hear but at least we now have some answers. This whole time they were seeing just 2 residual VSD's but during the cath, they found a third hole. Dr. Mitchell said it was not ideal to repair with the cath procedure. He has a 2 to 1 shunt, meaning that the blood is going to his lungs twice the amount that is going to the rest of his body, creating high pressures in his lungs and making the right side of his heart work twice as much as the left. So this means, that Noah is going to need another open heart surgery to close those holes. He is now scheduled to this surgery on Wednesday next week. It will be another all-day surgery. They believe that these VSD's are what are contributing to his liver and pancreas enzymes being elevated. So we are now on the third floor again.. the Cardiac ICU.
I think I am going to end this update for now... I need to process this and pray.

So... Noah's new mailing address will be:

Chilrdrens Hospital of Wisconsin
c/o Noah Solomon room # W322
9000 W. Wisconsin Ave
Wauwatosa, WI 53226

Noah is going to the cath lab tomorrow around 10:30am. Heart caths ALWAYS make me nervous! Please pray for safety and peace. Please also pray that whatever they find that needs work, that it can be done in the cath. Pray that he will not require any surgery to close the residual VSD's.
Depending on how Noah does during the procedure and if they need to do some extra work, Noah may be moved back to the cardiac floor.
Noah has been on his anti-seizure medicine for 24 hours so far. It is making him sleepy, but so far we have not seen any more activity.

Short update, I know... but I will do a more detailed one tomorrow after the cath is done. Night!

This morning, around 6am, Noah's nurse noted that she saw what looked like seizure activity. And for about a week, he has been having some crying spells that always end with him urinating. Today we had urology come and take a look at him. He doesn't have an answer as to why he is crying right before urinating but he said that he is thinking it might be that his body is seizing and the urinating is just an after effect. Noah is now on an anti-seizing medicine. We shall see how this goes. Dr MacArthur doesn't believe that, if it IS seizures, that it is NOT harmful to his brain and that it should not be a long term thing.
They are starting to wean his methadone little by little. Today they had an ultrasound done on his IVS and his SVC to check for the clots, their size, position,etc. They will need this information for Friday when they do his heart cath.
Noah is doing great with his eye focus. He is also starting to get some motor strength and coordination back... he is trying to put his binky in his mouth and also the mouth care sticks. This is AWESOME!! He knows what they are and where they go! I have been trying to get video of him trying but by the time I push recod on the camera, he has gotten tired and doesn't have anymore energy or strength to keep doing it. It is so sweet to watch him.

I feel like this update is kind of scattered! LOL!

My mom, sisters, and nephew came up to visit us today. It was the first time that Jonas got to come in to Noah's room and see him. They have not played with each other since October 15th :( Jonas had a huge smile on his face when he saw "his baby"! He did not show any signs of being scared of Noah's appearance... like it didn't even faze him, he was just so happy to see him. I wish Noah was awake during the visit... it would have been good for him to see his big cousin. Next time!

Yesterday, Noah had a new nurse every few hours it seemed like. It gets a little frustrating when this happens but I will forever be grateful to his last day nurse... She asked the best question in the world... She asked me if I wanted to hold Noah!! I said "ABSOLUTELY!" So she called in another nurse to help with the transition... passing a baby who has a breathing tube down his throat, an arterial line in his groin, and a central line in his neck, and leads and monitors all over, is a huge process! While I waited, my heart swelled as I anticipated the weight of my child in my arms again. I was very near to tears and SO ecstatic! As soon as Noah was in my arms and settled, his heart rate and blood pressure came down and took one little look at me and fell asleep. :) *Sigh* MY. HEART. MELTED. I held him for two hours before my arm started to fall asleep! LOL

The rest of the evening went ok... he did require some morphine a couple times, but for the most part he was comfortable.

THEN, at 4 o'clock in the MORNING, Noah's nurse wakes us up. At first, Aaron and I thought it was time for x-ray... that is the normal wake up time. Then she said, "I have some good news and some bad news..... Noah is getting transferred... back upstairs.... right now" :::SHOCK::: So.. Aaron and I both jumped up and tried to organize our brains and started packing. We had about 8 nurses helping us pack and carry things. When you have lived at the hospital for over a month and a half, you tend to accumulate a lot of things... So we packed up are whole "home" withing 25 minutes! That was fun. <~~ Do you sense the sarcasm?!? LOL

Noah is settled in his new room back up on the 5th floor... room W504!

Nothing significant showed up on his latest abdominal ultrasound. Their next plan is to talk with the surgery team about his pancreas. Get some ideas from them and possible come up with a plan. He is also requiring a heart cath, that will most likely be scheduled for this Friday. Heart caths always make me nervous, so please pray for this procedure to be done safely and that we can get some answers. We were also warned that he could possible get put back on the cardiac floor right after his heart cath. :/ Nice. ::sigh:: So, we will not be unpacking his room just yet. I wish the cardiac doctors would have thought about this before they decided to move us! Oh well!

Noah received a cute little Christmas Tree and a BEAUTIFUL heart shaped ornament for The Mended Little Hearts of Milwaukee today. It is now sitting in front of his glass door. We would love for family/friends/visitors/nurses/doctors etc. to help us fill it up!!

Please continue to pray for our endurance. Aaron goes back to work in a week. I am going to miss having him up here with us everyday! Please pray for Noah's heart cath to go smoothly. Pray for his physical therapy sessions to keep improving and that he gets his strength back quickly. Please pray that we can have him extubated soon and that he will not need anymore airway intervention! Pray for his withdrawals to subside so that I can have my Happy Noah back! And last, but not least, please pray that I can get at least ONE smile by Christmas!!! :)

There have been no real big changes in Noah's care these past few days, except they have taken away the scheduled Atavan (sedation drug) and boosted his methadone and clonodine. He is going through some fierce withdrawals... poor buddy :(

Today, he received yet ANOTHER ultrasound on his liver and pancreas. His liver enzymes have gone up again. Still trying to figure out what is contributing to these elevated numbers. The previous ultrasound from 2 days ago, they just HAPPENED to discover a blood clot in his IVC (inferior vena cava... caries de-oxygenated blood from his lower body to the right atrium). We are praising God for this discovery, as they were not purposely looking for this. So his heparin drip has gone up to prevent the clot from getting any bigger.
Foot splits are still in use... it's going to take a while before his legs and feet muscles are loose again.
Yesterday, Noah had begun to focus a little and start tracking movement! He is doing great with left to right eye movements, but has yet to move them up and down.. SOON though!
Withdrawals are the pits! Have I mentioned that yet?!???! Poor Noah... It is one thing to hear your baby cry and watch them squirm, but to NOT hear them cry intensifies the visual experience... you can see ALL their pain and discomfort in their eyes and body. I just wish I could hear him... gotta get that breathing tube out first though!


I was passed a message from someone I do not know but they are constantly praying for Noah and sharing our story with others, and was told, "Stand in Faith, and when all else fails....... Stand some more! You never know when your miracle is going to come!" So... I am going to KEEP on praying for that miracle! And ONE of those miracle I would LOVE to receive for Christmas is for Noah to give me at least ONE smile for Christmas! Sure, I would LOVE to have him whole and healed and all that jazz, but I would be more than happy and content with just one smile... I have not seen his breath taking, contagious, gorgeous, silly, heart melting, soul warming, smile for 32 days! Please, God, I would LOVE to receive ONE!!!

These last few days have been extremely hard. Noah is not doing so well. We have weaned down his Atavan over the past 3 days and his withdrawals are getting worse. We are working to help him get comfortable but it is very difficult to watch him suffer. NO child should EVER have to go through narcotic withdrawals! Unfortunately, Noah does. My heart breaks every minute of every day that we struggle to help him. It is a slow and excruciating process. I have to confess to you all, because I need prayers... My Faith breaks a little from time to time... just pray the God continues to give me the ability to make it through day by day. It is easier to ask God "WHY?!" then to fully give it to Him and to trust Him. I am being VERY honest when I say, "I am NOT as strong as you all think"! I faulter... sometimes on a daily basis... sometimes I feel like I can't hang on any more, but that is when God tightens his grip even more. He allows me to be sad and in the pits but He NEVER leaves! He is there in the pits with me... crying with me... showing me signs here and there that His Love is GREAT and He is working! He always gives me a glimmer of Hope... even when I am too down to notice it. But once I am out of my 'funk' I realize that He was ALWAYS there! He ALWAYS is giving us signs that He is there... we are just too absorbed in the moment to realize. Many have asked me how I have stayed so strong in my faith when treading through these murky, treacherous, painful moments... how they don't know how I do it... how they can't imagine being in our shoes or KNOWING they could NEVER do it! That is NOT true! God is the only one who is able to do it... and He shares his ability with me and Aaron. If it was in His plan for YOU to walk the same path, He would share it with you also. So it is NOT that I am able to do this... it is that God has chosen us for whatever reason and he is giving us the tools to make it through. He is pouring out His blessings... we just need to make sure to catch and use them. He is doing the same for you!!! He is giving you abilities left and right... different ones than what Aaron and I are given but to me it is all the same. We KNOW God has His perfect plan for ALL of us. We just don't always know what exactly it is. I pray that God will give you strength and determination to follow!
With that being said... here is an update on Noah....
Last night, Noah kept showing movement that was concerning. He was showing signs of seizure activity last night and the doctor ordered an EEG test. The test was run for 45 minutes but during that time, Noah was not doing any of the movements he was showing prior to the test... SO... no seizure activity was detected. If he still continues to show those signs, another test will be ordered. So far, he has not done the same movements as last night. Dr. Hoffman just came in because we thought he was starting to have one of those episodes... although not nearly as close to the ones last night. Dr H looked in his eyes, moved his arms in a coordinating motion, and lifted his jaw, etc. He said this is not a seizure but it is like he does not have the right balance of drugs (i.e. he could be under too much and his body is just having a reverse effect). He said he wants the nurses to avoid giving him PRNs as much as safely possible but instead to try doing the coordinating movements as kind of like a brain distraction. He also said that when he gets in these agitated states that MORE stimulus could actually help him rather than giving him PRNs. His explanation is that when you create more stimulus, we are telling his brain to stop focusing on flailing his body or the agitation but to focus on something else. It makes a lot of sense and I am praying that it helps! He said he knows it is and will be hard to watch but it might just be what his body and mind need. I like this plan.
Noah's BNP is starting to come down... 1600! Still high, but Praise God it looks like it is slowly getting better. His liver and pancreas enzymes are elevated so an ultrasound was done to look for stones or sludge... no results have been posted yet.
His renal and cerebral saturation levels have also been down for reasons still unknown.
Noah has yet to focus his eyes... still stares and doesn't really follow movement yet. Please pray that this improves.
While I was taking a break away from the hospital, Noah was started on foot splint therapy. From being in the bed for 4 weeks, his feet have begone to drop causing his muscles to tighten. So he now wears foot splints throughout the night and on/off in 2 hour increments during the day.

::Sigh:: I think I am done with my update for now. I am emotionally, physically, mentally, spiritually exhausted. Until next blog!

Hello everyone! I am writing this from the comfort of my home. It is nice and refreshing to get a couple days break from the hospital. Aaron stayed with Noah so i wouldn't worry about him too much :) Thank you babe!! I love you so much!!

The results from the ECHO showed 2 residual VSD's in "moderate size". Don't really know what that means.. I know it is not a good thing but I don't really know what they plan on doing. Possibly a heart cath.. that is all I know.
From what Aaron told me today, they have gone down on the Atavan dose again. He was doing great but about an hour ago he got really fidgety and his blood pressure started to rise so they gave him a PRN of Ketamine. They are also going to try feeds tomorrow. Please pray that he starts tolerating the feeds so we can get him back on his healthy normal nutrition. Aaron said that he had a pretty good day today considering him going through a little withdrawal from the Atavan.
I miss my boys!!! Can't wait to see them tomorrow!!