Friday, December 31, 2010

Last update for 2010!! Where has this year gone?!?

Noah's fevers have gone up a little and he was cultured again this morning. Already, his blood has grown bacteria as well as his breathing tube. He has been on antibiotics for a couple days now and will continue to be until the infection is gone. We are still waiting for the meeting about Noah on Monday. His pancreatic enzymes have doubled again today so they have stopped his feeds. We were doing so well with his tolerating the slow drip! I am so frustrated! I know the doctors are too. We have no idea as to what is causing his elevation. But I am going to give it to God.
Last night, Noah had been having a hard time settling for the night. We had tried his PRN's but nothing was really helping much. I am having an even harder time watching him like this. I feel like I can't help him. Sometimes I feel as if I have triggered his agitation is I brush his arm with my hand. Sometimes I avoid kissing him good night because I fear waking him and him being restless all night because of it. I wish I could crawl into his crib with him and snuggle. Maybe I should ask them for a big kid bed so that I CAN. I can dream!

Anyway.. Aaron and I are going out on a date tonight. Aaron has spent his birthday money to take me to see the Harlem Globe Trotters!!! I am SUPER excited!!!!!! Then we will be coming back to the hospital to watch 2011 drop in with my boys and get my New Year's kisses! Happy New Year everyone!
Thursday, December 30, 2010
Noah had another echo done today, the reason being that he was started on epinephrine again. The results showed high pressure in the right side of his heart. So they will be discussing him on Monday in the cardiac meeting. He could need another cath done to determine just how high the pressures are or they could start him on a new medication.
His withdrawals are getting a little worse. It is like he is hyped up on caffeine and is restless. We are having a really hard time balancing this out... but we have been down this road before and we know it will end.. just difficult to live in the moment. His nights seem to be worse than his days. We just need a lot of prayers this week. Aaron is going back to work on Monday and it is making me nervous with Noah's condition right now. But we both need him to go back... he needs to have a bit of normalcy to get his mind of things here and then there is the financial end of things. But we are leaning and trusting God for ALL things and He has been faithful.

I can not wait till we are done with this stay! SO many things going on right now and it is all tearing me down emotionally.

Please continue to pray for Noah's pancreas... there was an increase in his enzymes this morning. Pray for his heart pressures to normalize. For his withdrawals to start getting better and NOT worse! Pray for our [future] living situation... We have decided to NOT go with the apartment complex. They had been giving us too many problems for us to be comfortable with signing a year lease with them. We need to have a home for Noah to come home to where we have the space. Please pray for me, as after this Sunday, I will once again, be here with Noah on my own for the most part. I will not have transportation once Aaron goes back to work so the only time I can get out of the hospital is when he or other family members visit. Thank you.
Tuesday, December 28, 2010

Not today...

Noah did not really pass the trial yesterday so today they will not be extubating him. We are not sure if he exactly failed because there was a lot going on when the respiratory therapist turned down his settings. Once when they were suctioning him yesterday, his heart rate dropped and his color was really pale. He did recover but it took a lot of reserve for him to get his color back. Yesterday was a really rough day as far as withdrawals go. The doctors are trying to come up with a good sedation regime so that he is still comfortable but not totally knocked out. So far, today, he is doing great. He woke up for me and was actually playful and smiled for me. :) And he actually tried to reach up and touch my face... it looked like he wanted to kiss me because he was touching my cheek and trying to pull my face toward him with his mouth open. So cute! But the stinking breathing tube was in our way so I had to settle with kissing him on his hand.
Noah's pancreatic and liver enzymes are coming down. MUCH better than last week! His belly is smaller and less firm. Nice and soft and squishy. We are actually going to try small feeds today. They are also going to try a different formula that is broken down already so it will be easier to digest. Just until he is tolerating his feeds again. His kidneys are doing MUCH better! I love answered prayers!
So, as far as the trials go, we just did a half hour worth and he seemed to tolerate it well. They may try an hour worth later this evening. This is going to help get his respiratory strength back up so that he will do better with extubation. They are also switching his breathing treatments from Albuteral to Atravent, to see if this will work better as far as his malasia. He still has a lot of secretions but it seems to be better. He is just weak still.
This is Aaron's last week with us up here, then he will be going back to work. It has been really nice having him with us this whole time. Pray that all three of us will be together at home very soon!

Prayer requests:
For the withdrawals to subside and for him to be awake and comfortable.
For his airways and lungs to strengthen so we can get the breathing tube out.
For his overall strength and healing to continue to improve.
For his toleration of the new formula and feedings so we can get him back on normal nutrition.
That his recovery quickens even more.
Monday, December 27, 2010

Big plans for tomorrow

Tomorrow they plan on extubating Noah. This will be second time they try so please pray that his lungs and airways are ready and strong. Today, they are doing a trial with the tube still in, they just turn down the vent settings and let him do all the work. They have been doing a lot of weaning of his sedation drugs over the weekend and he is having withdrawals again. But we need to get this over with so we will push through this rough time and rely on God for our endurance, comfort, and strength.
One thing that I discovered yesterday when we got back to the hospital was that Noah had 3 blisters on his neck and a little yeast. I was very upset! But it is not being taken care of and we are trying to keep the area dry and exposed to air.
Noah's fever curve has been trending down. AMEN! He has been more awake in a little interactive with us... yesterday morning, I was snuggling up to his cheek and he tried to reach up and touch my face. I put my cheek in his hand and he petted my face and then tried to grab my eyelashes! So sweet. I fall more in love with this sweet boy with every second that passes! I can't wait to hold him again.

Aaron and I were able to go to my mom's for Christmas Eve and day. It was really hard watching all my nephews and niece open their gifts and play together. Noah was missing for that picture. I kept remembering moments of Noah's first Christmas last year. I cried quite a few times thinking about it. I missed not having Noah on my lap wanting to get down and roll around in all the wrapping paper. He would have really enjoyed himself. But it's okay... when he DOES come home, I don't care what month it is, we will celebrate with Noah.

Prayer requests:
For tomorrows planned extubation to go smoothly and for his to PASS!
For his pancreatic enzymes and liver enzymes to keep going down.
His overall healing to improve.
For his withdrawals to GO AWAY!

Thank you. I pray everyone had a GREAT Christmas! And a great New Year!
Thursday, December 23, 2010
Noah's labs from early this morning show an increase in his pancreatic enzymes so they will be doing an ultra sound sometime today. Please pray for answers.


Chest tubes, heart lines and pacer wires ALL got pulled this morning! YAY!! They are even saying that they are going to turn off his Fentanyl!!!!

When Aaron and I got to the hospital this morning, Noah looked really comfortable despite having a distended belly again. He was sleeping peacefully. I kissed him on his face and he opened his eyes and sleepily looked at me. Even though he did not smile, I knew he was happy to see me.

All of his other numbers are looking really good. Praise God! So please pray for continued healing. Pray for his liver and pancreas to heal. Please pray for his lungs to be healthy and strong enough for extubation and for him to PASS extubation!

*** Mommy and Daddy know of a special visitor that will be coming to visit Noah tomorrow morning!!!*** I will post video and pictures tomorrow :)
Tuesday, December 21, 2010

4 days post-op...

Noah is doing good as far as numbers go. He is still one of the sickest kids on the unit but he is making slow progress. Today they have weaned his Fentanyl and Versed a little. I don't know if he is liking the change though, he has been thrashing around and grinding his teeth a lot today. I hurts to watch him like this. I feel helpless. I can not wait until this is all in the past and I can look back at it with distant memories. Right now, in the moment, this seams surreal to think about. Some days I feel like it is never going to end... like the pain is always going to be there. It is hard to picture him being a normal toddler getting into things and being naughty. I can't wait for that!
Lately I have been feeling like this hospital stay is going to be our longest one yet. Only 20 more days and this WILL be the longest stay. ::sigh:: :/ WE WILL GET THROUGH THIS!
I think I need to end the update for now... otherwise it will end up as a rambling.
Sunday, December 19, 2010
Noah had a rough start to the night last night. His temperature peaked at 42 degrees Celsius which is about 107.6 degrees Fahrenheit. VERY scary! They put him on a cooling mat and cooled him down as quickly as they could. He was awake and looking at the doctors and nurses around him, so they were not too concerned about him having seizures but it is not certain. Since then, he has blood work done every 4 hours and they are keeping a close eye on his numbers. Some other things that they are concerned with his temp being that high, is muscle break down. This is also measure in his blood. It is elevated to 3,000's (which is really high) but it is not as high as kids who have severe muscle break down... theirs would be in the 20,000's. They are checking this number every 4 hours or so. Something that showed in the blood work, that they were not looking for, was a HUGE escalation in his liver enzymes. This is bad! It could be from his temp being so high, but once again, this is also a number they are watching VERY closely.
Some positive outcomes of the night include his Fentanyl being weaned from 15 to 8! This is a HUGE answer to prayers! This is a drug we ALWAYS have trouble coming off and he is doing so well! PRAISE GOD!!!!!!!!!!!!!!!!!!!

I feel like there is some information I have forgotten to mention... but please continue to pray for strength for Aaron and I as well as Noah. My brain is to scrambled to even try to come up with a prayer request, but God knows His plan so just continue to pray for His will!
Saturday, December 18, 2010

Almost 24 hours post-op!

Noah is doing very well. His urine output is not doing as good as they would want but they are keeping an eye on that. They have turned off his paralytic about an hour ago and so far he is started to move his tongue and a little eye movement. His sedation meds are even higher than the last operation. He has not gotten swollen yet but we should see some swelling in the next few days. His heart rate is still high but given the lengthy procedure yesterday, his heart is just a little mad. His blood pressure is stable. However, post-op his pressures were on the low side. During surgery, he had a moment of hypertension but that was the only time that his numbers were not good.
The second VSD was left open. Dr Mitchel was unable to close it safely enough. The position of the VSD was in such a spot that he was unable to see. But he is hopeful and optimistic that Noah should not have any trouble having a more "normal" active life... it will just be a short term struggle with recovery.

Things to focus on in your prayers:
Noah's overall recovery to be quicker this time around.
Urine output to improve.
Noah's pain control and sedation to be balanced well and no struggles.
His airways and lungs to heal and be strong enough for when it comes time to extubate him.
That the second VSD to close on it's own/not cause any problems and not require any additional operations or procedures.
For his strength to return.
Easier time getting him back off the sedation drugs.
When it comes time to try feeding him, that his gut will work and will not cause him any discomfort.

Thank you everyone!
Friday, December 17, 2010

Sugery updates!!!!

******** Today's updates during surgery will be added to this post!!! So please keep scrolling down for the additional updates. I will be updating this post EVERY HOUR! ***********

First update 8:30am CT:
They came and got Noah at 7:30 this morning. It is now 8:40, Dr Mitchell just came in and explained everything that will be done during surgery and that he is very optimistic that closing these residual VSD's will help him improve with his recovery. They had just completed an ECHO done through his esophagus and it showed just 2 holes... on at the top of the patch and one at the bottom. Before they open him up, they will be doing a bronchial scope to look at his airways. Stay tuned!

Second update 10:00am CT:
Dr Mitchell has made made the incision into Noah's chest and has started dissecting through the scar tissue. Prepping for the transition onto bypass is starting. Vitals are stable. Dissection is going to take a while.

Third update 11:00am CT
Noah has been on partial bypass for about 50 minutes and complete bypass for 25 minutes and Dr Mitchell is now working on finding/closing the first VSD. Noah is doing well and surprisingly, the dissection has gone a lot quicker than expected. PRAISE GOD! **** My mom is helping me keep busy... she is cutting out fabric so I can make some crayon rolls. I have my own little sweatshop going on here ;) LOL! ****

Forth update 12:00pm CT:
BOTH VSD's are now CLOSED! They are now warming him back up. His heart is beating on it's own!!!!! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!! They will now do an ECHO to make sure there are no more residual holes and then start to take him off the bypass machine. Things are going really smoothly!

Fifth update 1:00pm CT:
Prayers please!!! Noah is going back on bypass. They had taken him off bypass and had done the ECHO... the hole on the bottom did not close properly. They did blood work and determined that they needed to go in and try to close that hole again. So once again they are cooling him back down and will once again put his heart to sleep and try again. Noah is still stable and doing well but with every bypass run there is always risks.

Sixth update 2:00pm CT:
Still working on the VSD... still stable. It is just a little more difficult working on this hole.

Seventh update 3:00pm CT:
Patching is done and now they are doing another ECHO to see if it is now closed... Please pray that this time was successful! When it is done and everything looks good they will do the broncoscopy to check his airway stability... Please pray for an airway miracle that he will not need any further airway reconstruction!

Eighth update 4:00pm CT
They are unable to close the second VSD. It is too risky and dangerous for them to continue to try. Noah is no longer on bypass and is doing well. The cardiologist that came to update us this time said that it will be a short term struggle but in the long hall he will be able to live a "normal" life with this hole. I asked him what he means about short term struggle and he said that we will struggle with getting him off the ventilator for a little while. Please pray that his lungs will be strong enough and not too much fluid over loaded. They are now doing the broncoscopy. Noah is doing well.

Ninth Update 5:00pm CT:
They are now closing Noah's chest. Everything is going well. Coming off bypass was a good transition again and his heart is beating on it's own very nicely. For some reason, unknown to us still, they have decided against doing the bronc. We are now waiting for Dr Mitchel to come out and talk to us.

LAST update!!!!! 6:00pm CT:
Noah is done with surgery and is already being wheeled back to his room. we got to see him in the hall and he looks great! During surgery he did have one episode of hypertension but besides that and the unsuccessful closure of the second VSD, everything went great. Now we are just waiting to go back to his room, which should be in about an hour. Thank you all for praying for us today. Please continue to pray for a quicker recovery and a successful extubation when the time comes.
Wednesday, December 15, 2010

Surgery plans...

Noah's re-operation on his heart has been moved from today to Friday morning. Dr. Nancy did not want him to be second case of the day, she wants him to be first or only case. It is going to be another lengthy surgery. Most likely all day. So with these extra few days, we are holding Noah at least once a day. Yesterday was the second time I have gotten to hold him. I had Aaron take pictures and some video. During one of the times Aaron was recording us, he got close up to Noah's face. Noah was just looking at the camera and all of the sudden the corners of his mouth turned up..... NOAH SMILED FOR ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My Christmas prayer was answered!!!! AND God made it so that we could capture it on VIDEO!!!!!!!!!!!!! Thank you Jesus for this Christmas miracle!!

Please pray for Noah's surgery this Friday. Praise Jesus for my Christmas miracle smile!!
Monday, December 13, 2010
Morning rounds, we discussed Noah's surgery. It is in the schedule for Wednesday still, we just don't know exactly what time yet. But it will be an all day event again. They are deciding whether or not to do a heart cath at the same time as the surgery... again, something that will be decided that morning. Noah is in pretty significant heart failure. It is causing his organs to work extra hard. They are pretty much just going to work on keeping him comfortable until Wednesday... no real big changes.
Today, we are struggling with keeping him comfortable, though. He looks like he is in pain or something... cries almost every hour. Poor buddy. His temperature goes up as he gets agitated too but nothing has grown from the cultures, so no sign of infection.
They have been having to suction him a lot as well.. and he has been throwing up a lot of mucus. His liver is extremely large and almost rock hard. This could be because his heart is sick.
Pray that the surgery on Wednesday will go without bumps and that this recovery time will go a lot quicker and more smoothly. Pray for Aaron and I... it is putting a strain on us as individuals. We just need a break from life for a little bit, but that is difficult when we worry about our baby boy.
Friday, December 10, 2010

Heart cath update... We have somewhat heavy hearts today...

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
Thursday, December 9, 2010

Nervous anticipation for tomorrow morning...

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!
Wednesday, December 8, 2010

Noah likes to be a mystery :/

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!
Tuesday, December 7, 2010
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!!! :)
Monday, December 6, 2010
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!!!
Friday, December 3, 2010

::Rock:: *Noah* ::Hard Place::

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!
Wednesday, December 1, 2010

Results from the ECHO

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!!
Tuesday, November 30, 2010

Things look promising...

Noah had an ECHO and a CT scan this morning. So far the CT results came back with no big concerns.. PRAISE GOD!!!!! It did show very small calcification but nothing that would have shown up from the cardiac arrest. It could be from as far back as when Noah was still in my womb. It is not concerning though. In Dr. Niebler's words,"I have no reason to believe that we should have any problems waking him up and retuning to the same 'Noah'." It will take some time though.
It is very reassuring but we will not know for certain until we do wake him up so please keep this a top priority in your prayers for Noah.
I will update once we hear results from the ECHO.
Today they are going to start lowering the Atavan dose.
Monday, November 29, 2010

Round 1....

They tried to extubate Noah today. He had the breathing tube out for an hour and a half before they re-intubated him. I knew he wasn't ready after 5 minutes but we all wanted to give him a chance. He has a lot of thick secretions and aspirated some causing him to struggle for each breath. Thanking God that they were able to re-intubate without any difficulty and he is now resting and breathing comfortably.
Just before they extubated him, they turned off his Ketamine drip (a sedation drug) so he would be a little more awake. Even though they had to put the breathing tube back in, they left the Ketamine off. I am happy about this! Ketamine can cause hallucinations and cause secretions.
They took another BNP (the blood test that measures heart failure... how sick his heart is) and it is extremely high... 2200! They will be doing an ECHO sometime in the next couple of days. They will also try waking him up more to see if he will interact with us... the status of his brain is still unknown and a little concerning... and will be going down for a CT scan in a few days. He has been opening his eyes wide today but doesn't really look AT us or move his eyes to follow movement. He is also still on a fair amount of sedation so this could also be the reason. PLEASE PLEASE PLEASE pray that Noah is still there!! It is going to take some time but I have faith that God will restore him 100%!
His liver is still large... most likely because of his BNP being so high.

Lord, please watch over the care of Noah. Guide the nurses and doctors working with him. PLEASE deliver the SAME Noah I had the day before his surgery... the only change I want is his heart to be healthy! Please continue to heal Noah. I pray that the next time they try extubating him, it will be YOUR timing! And that he will not require any more airway intervention. Please comfort Aaron and I and let us feel Your presence and Your hand working in our lives. Give us peace and patience with eachother. In Your loving and gracious Name. Amen.
Sunday, November 28, 2010

Things are speeding up a little...

The power of God and prayer is AMAZING!!!! Please don't stop!!!!

Noah's progress is starting to quicken a little day by day. Today, they are turning off the Fentanyl!!!! He is doing very well with the weening method... has not required any PRN's in the past 3 days now! They are weening the vent support today as well, in hopes of taking the breathing tube OUT TOMORROW MORNING!!!
Last night, we had to turn off his feeds again as he kept throwing up. But we all believe it is just because he is more awake and is gagging on the breathing tube. So they will leave him on full IV nutrition until we take the breathing tube out.
This is surreal. I know everyone has prayed for this... for his health to return quickly. And it is starting to... it just is starting to make me nervous about how quickly it is happening... something I can't really explain to you all... but I know Noah is on the right path!
Please keep praying for the specifics I posted yesterday. With extra focus on his respiratory status... I will let everyone know tomorrow morning if they do indeed, plan on extubating him... We need all the prayers possible for success!!!! And a MIRACLE!!!!!
Saturday, November 27, 2010
Happy Thanksgiving (a couple days late) EVERYONE!!! Noah is doing pretty good.

Yesterday, Noah had his pacing wires removed... seeing as he was only paced for half a day after his cardiac arrest. Less and less wires and tubes!!! LOVE IT!
The past couple of days, Noah has not required any PRNs, we have been able to keep him happy. We are getting closer to getting him off the Fentanyl and as of today, he is totally off the epinephrine!! His renals are looking better... still on the low-ish side but he doesn't dip to the low 30's anymore. He is still having high temp spikes as high as 39.7*C (103.5*F). When he reaches 39*C we turn on his cooling mat until he is 38*C. Tylenol is not doing ANYTHING, so we have to resort to the cooling mat. I HATE the cooling mat... if he is not watched closely enough, he gets too cold and starts to shiver... but thankfully he has not had any of those episode in the past two days. I think we have got a 'rhythm' going. His vent settings are really low now... Low enough that were he awake enough, they could extubate him! Which, BTW, they are talking about later this coming week! We have started feeding him again. Just 3cc's an hour this time. He has still been retching and throwing up a lot but wee need his gut to move!

Prayer requests:
The continuing progress of weening his off all his sedation meds with no problems.
For Noah to wake up more and be alert and to actually focus on us.
For the unknown health status of his brain... will know more when he is more awake and interacting with us.
For his liver to decrease in size more.
For his toleration of the feeds and that the retching and throwing up will cease.
When it comes time to extubate him, that he will have success and not need re-intubation! AND that extubation time will be SOON!!
For Aaron and I (mostly me!! LOL) to be able to hold Noah again SOON!!!!!!!!
For a miracle on Noah's airways (REALLY focus your prayers on this one specifically as well as the brain function)
Also, that Noah will not require additional closing of the residual VSD's.

I know there are a lot of medical terms in this and you may not know what you are praying for... but God does :) LOL!
Love you all!! And thank you!!!!!!!!!
Wednesday, November 24, 2010
Right this moment, Noah is getting an ultrasound done on his thigh. His thigh has been getting firmer and larger over the past couple of days so they are having the US done to see if there are any blood clots. It looks and feels like he has a huge charlie horse. Come on, Noah! Seriously... are you going to add this to the mix?!? (Noah is just being Noah.. always has to be a puzzle. I sure wish he came with an instruction manual though!)
We woke up this morning to Noah's eyes WIDE open and responding to our voices! You can tell he is actually recognizing our voices and trying to turn his face towards us and trying hard to focus. He looks more comfortable today. It seems we found a good balance of the drugs he has on board... for now.. *sigh*. His BNP is still high, although I didn't quite catch where it stands today, whether it is higher or lower than yesterday. He pooped twice today!! His belly is a lot less bloated, but his liver is still large. They have gone down on his vent settings (giving him less vent breaths, letting him breathe at his own pace.. just leaving the pressure support the same.). We have stopped his feeds last night due to the vomiting. They are going to leave it off until they hear more bowel sounds.
Ok... so now the ultra sound is done.. just waiting and praying for good results but I want to find out what is going on with his leg!
Over all, today is a little less stressful. Aaron and I will not be going home tomorrow for Thanksgiving. We don't feel comfortable being that far away from Noah when he is so sick. Thankful to the many friends that have offered their closer homes for us. Thank you Erin and Robin for taking us in as your own family tomorrow and letting a couple bums celebrate the Holiday with you! :) We love you!!!
Tuesday, November 23, 2010

Rough seas ahead...

Today was just as, if not, more difficult than last night. Noah's blood pressure has been above 100 diastolic ALL DAY LONG. He has only gotten about an hours worth of sleep and has been extremely agitated with a fever as high as 103.5. We have tried PRNs and Tylenol all day and nothing helped.
Aaron left around 5:30 pm to go to his Men's Bible study group and since then Noah had gotten MUCH worse. So bad to the point that I called and asked Aaron to come back. We have tried a new drug called droperidal (I know I did not spell that right! lol) and it seemed to help him. However, about 45 minutes later, his blood pressure came back up. His color is not good... he looks very gray and sickly. That is the best I can describe it. He has been clenching and grinding his teeth and has also started biting his tongue. This concerns me that he may be having seizures but it also can be another sign of withdrawal. I will be asking that they do a head study tomorrow to ease my worry. They have also done a KUB (finally!) and it showed a lot of gas in his intestines and something about his left lower quadrant having a thickening of the intestinal wall. We will know for sure by the morning rounds. Noah's BNP is high... the highest I think it has ever been. This is the blood test that shows heart failure.
This is very scary for Aaron and I. We don't know what to make of this. It is extremely difficult to sleep tonight because we both want to be by Noah's side and make sure he is comfortable and well.
Thank you Lord for Nurse Jaci today. It is nice when you get a nurse that advocates for and with you.
I don't know if I have expressed well enough how critical Noah seems to be right now, but PLEASE PLEASE PLEASE.... pray ... I don't even know exactly what to have everyone pray for, but just pray for comfort all around and restful sleep and safety for Noah.
Yesterday had been a great day, but towards the evening and all through the night was really rough. Noah is going through withdrawal and it is making him extremely uncomfortable. His renals were low and his blood pressure and heart rate were high. We also had to turn off his feeds for a few hours because he started backing up and had bilious coming out of his g-tube. He had pooped a lot yesterday but was having a hard time with it because he kept bearing down a lot during the night. Then around 5 this morning, we had given him a dose of Benadryl because itchiness is a side effect of all the narcotics he is on. After that dose he calmed down and slept for about 2 1/2 hours.
So... During rounds this morning, they talked about his night and all the things they tried to help him. He now has Benadryl as a PRN and they are starting methadone to help with coming off the other sedation meds. His feeds are back on but still at a rate of 6cc's an hour. He seems a little better this morning than last night so please pray that this continues in the right direction. His lipids are going to be run in a 12 hour period so he can get the fats he needs.
Prayer list:
Noah's withdrawals to subside.
His renal function to improve and his blood pressure to normalize.
His fever to go away.
His liver to go down and his belly to become less bloated.
His gut to wake up more and start digesting his feeds.
That he can come off the sedation drugs quicker without being uncomfortable.
For Aaron and I to feel confident in Noah's care from the nurses and doctors. And for us to feel comfortable going home this Thursday for Thanksgiving with the family.
For our family, that they will be comforted when they can not be here with us everyday.
Thank you
Sunday, November 21, 2010
Noah has pooped TWICE today!!!!!!!!!!!!!! This is such AWESOME news!!! His belly is still distended but not as much as it was yesterday!
Today we have gone back up a smidgen on the epinephrine to help with his renal saturation. So far so good.
We are now starting feeds with Noah. Just 5cc's an hour through his g-tube. This should also help stimulate bowel activity as he wakes up and eventually help with his renals.
He still has the constant fever and it is now resistant to Tylenol. But nothing has grown from the cultures which is a good thing but also frustrating at the same time.
They were thinking that he was hallucinating earlier which can be a side effect from some of the sedation drugs. They gave him a one time dose of some kind of drug that helps with this kind of thing. Pray that these hallucinations (if that is even what he is having) will go away.
Please add the rest of my family to your list of prayers... it is hard for them to see Noah in this condition. Who can blame them?? I certainly can not! But this hospital stay is taking a HUGE toll on all of us! But with God's comfort and perfect plan, I KNOW Noah will be fine! I have had a strong feeling that Noah will grow up to be an inspirational speaker!
Saturday, November 20, 2010
Today, they are not going to change much on his drips. I heard they will add some sort of monitor to the ventilator... it goes down his nose and into his esophagus and measures his diaphragm activity.
Yesterday was an AWESOME day! Noah opened his eyes for us!!!!! He even tried to lift his hand to touch my face. PRAISE GOD!!!!
Noah's belly is still distended and he has no bowel sounds. But as they ween down his drips, we should start hearing movement. His kidneys are improving and he is putting out a lot of urine! Yesterday he ended up being negative in his fluid balance because he had been urinating a lot.
Later today, they might ween down his fentanyl again. He is starting to breath over the vent which is what they want him to do.
So please continue to pray for his kidneys. For his belly to go down in size and for his bowels to wake up and start moving again so we can start feeding him. For his brain function, him waking up and opening his eyes and reaching for us are all good signs, but we are not out of the woods yet. pray for whatever infection is in his body, to leave... he has had an almost constant fever for the past few days.
The swelling on his eyeball has returned to normal! Thank you for this answered prayer! The swelling on his arms, hands and legs and feet have gone down significantly! He looks a lot more like himself :D
Thursday, November 18, 2010

Extra, extra!! Read all about it!! There's GOOD NEWS!!!

I have been MIA for the past 2 nights. Got a nice break and spent time with my mom and sisters. I love hanging out with them!
While I was away, Noah behaved himself! Yesterday, he had his RA lines pulled. Then, this morning, he got his chest tubes taken out!!!!!! A couple steps closer to me being able to hold him again!!!!! I am SOOOOO EXCITED!!!!!!!!!!!!
They have added clonodine to the mix of sedation drugs. This, I think, is a good sign because it means they will begin weening him off the other more extreme ones! So tonight, they have weened down the Fentanyl (sedation) and his epinephrine (heart function med) and he is doing great. He has had a REALLY good day today! He is a super wiggle worm too... he has been squeezing my fingers and lifting his arms. He has been trying to open his eyes all day too :) He does have some swelling on his eyeball, so please put that on your prayer list. It is nothing too concerning, just looks a little uncomfortable. Another thing added to the list of prayers is his belly. He has gotten extremely bloated in his abdomen and his liver is super huge. His skin is very tight to the point that it hardly has any give when you try to press on it. Poor buddy :/ They have given him 2 glycerin suppositories to help with passing gas, but so far nothing has been happening.
Thank you Jesus for this AWESOME day you have given us!
Tuesday, November 16, 2010
Noah's chest has been closed for 24 hours now! PRAISE GOD!! He is having some issues with his renal sats and blood pressure. The swelling has gone down a lot in his face! He looks more like himself :) He is becoming VERY tolerant to his sedation meds, requiring even more to keep him asleep. I can't wait until we can start weening him off! He had a couple extra doses of lasix (his diuretic) had put off a lot of extra fluid. He has been spiking fevers over night, but I think it is mainly due to his agitation so he has been getting Tylenol.
Over all he is doing good! We just need to keep praying for the usual. Another request added to the prayer list is to get him weened off the epinephrin (the heart function med). That is our next 'moving forward' goal.
Monday, November 15, 2010
Noah's chest is closed!!!!
They took him down to the cath lab for the procedure. They did a picture study on his PA's before they closed his chest. The study showed the pressure in his left lung was higher than they would like. But nothing concerning about the new PA plasty. Things looked good for the most part. They cleaned out his chest and have closed him up. Dr Mitchell did NOT redo the airway pexy. It is possible that he will have to go back in later down the road to re-suspend the airways because of his underlying malasia. This is something that we (Aaron and I) are concerned about and would love prayers for a miracle healing oh his narrowed airways. Please pray that his airways will become much stronger so that he will not require any additional intervention. We NEED a miracle!! PLEASE GOD!!
Keep up the prayers for his kidneys!! He is producing a LOT more urine these past 2 days and has since then, gone down in swelling!!! Praise God!!!!!
Continue to pray for his brain... I have FAITH that God is going to give me My Noah back when he is awake!!!!!
Please continue to pray for the infection that is camping out somewhere in his body. It seems as though we have found the right antibiotic and his white blood cell count is decreasing! YAY!

Alright.. Thank you!! Can't wait to go back to Noah's room and see my baby with his chest closed!!!!! Pictures to come soon!!! :D
Sunday, November 14, 2010

The Silver Lining....

Noah has been off the paralytic for 24 hours now. Last night, around midnight, he finally had some movement. It started with his tongue and fingers and toes. Small, subtle movements but moving none the less. GREAT signs!!! He is still under a LOT of sedation so he won't be waking up and doing jumping jacks anytime soon :)
His white blood cell count has started going up over the past few days, so they are concerned with infection. So now they are putting him on additional antibiotics. This morning, I noticed that his urine output is increasing.. PRAISE GOD!! But please continue to pray for the kidneys!!! Noah's lungs and airways have a LOT of secretions, so there is a possibility that he may have an infection there.
Dr Michell came by to take a look at him. He is concerned about infections so he will be closing Noah's chest tomorrow. He will not be redoing the pexy, though, as he is concerned that the pexy had something to do with Noah's arrest last week. But this will be readdressed a little ways down the road. So for now, while Noah is still intubated, having the pexy down will not hinder his airways at the moment. When it comes time to extubate Noah, that is when the REAL test on Noah's airway will be.
Specifics to pray for today: Focused prayers for the kidneys to continue producing more and more urine. The closing of his chest tomorrow, that it will go smoothly and will not put extra strain on his heart and kidneys. Noah's movement to improve (this will help with moving the extra fluid around so the swelling can go down). Noah's airway situation to heal so that he will not require additional intervention when he is extubated. And for Noah's lungs, that any infections that may reside there, that it will be gone!

Yesterday was a 'bad day' for me. Very emotional. Thank you to everyone for your prayers and encouragement. A SUPER awesome friend took me out last night to see Life As We Know it and then to dinner. We had a GREAT time and laughed so hard. I really needed that laugh and girl time! She is such a blessing to me! :) Looking forward to another girls night with her sometime. Later this week I am going out with another equally awesome woman!! Can't wait!!!

Side note: The hospital is STILL under water restriction, so pray that they can get the water cleaned and running again!!! Thanks!!!
Saturday, November 13, 2010
Still need focused prayers on Noah's kidneys and brain function. This is getting EXTREMELY hard to watch my baby just lay here with no real changes.
Today they have, once again, turned off his paralytic in hopes to see if he can tolerate moving a little. Last night we struggled even more with sedation and getting him comfortable. However, I think who he had for a nurse last night has something to do with it. :/
I am getting so frustrated with everything. I cried during rounds because my emotional cup is extremely full now and I can no longer keep it in. I just feel like we are not actively helping Noah recover. I am worried about his character... I really miss my baby boy who plays with my eyelashes and gives me random kisses and likes to shake his butt. It is harder to look at him this time around because he was not sick going into surgery. And because of that, recovery time feels like forever. It is a gloomy day outside this morning... a reflection of my heart right now. Maybe it is God's way of showing me that He is sad with me and that I am not alone in this moment. Today I just need and want to cry. I don't want to be strong today, and it is time for it to take a back seat. Praying tomorrow will be a better day and that I can once again be 'strong'.
PLEASE pray for Noah's kidneys... this seems to be the problem we need to get fixed before we can actively help Noah.
Thursday, November 11, 2010
There was no update yesterday because things are pretty much the same.
Noah is starting to have sedation issues from being on the narcotics for a while now. His body is requiring even more to keep him comfortable and asleep. His pupils enlarge, his BP and heart rate go up, and his renals go down, and his skin becomes very modeled or blotchy looking. Today, they have gone up on his atavan and will possibly go up on his fentnal. All his organs are improving and functioning except his kidneys. His kidney function is low however, he is still producing urine.
So, a couple specific things I would like us all to focus on in prayer, are his kidney function to improve like the rest of his organs and his brain to show no signs of stroke or bleeding when we eventually wake him up. Thank you :)

I would also like to thank all the visitors we have had these past few days. It means a LOT to Aaron and I to experience the support and love. Thank you to those who have brought their little ones along with them so that I may have a little "mommy therapy" and hold your precious child as I can not do with Noah just yet. It warms my heart to feel a little normalcy in that small moment :) Thank you to everyone who have provided meals and goodies. Thank you to everyone for your quick response on sending me lotion... I now have a good variety of scents to choose from :)
And as always, thank you for holding my little family in prayer and love.
Tuesday, November 9, 2010
Psalm 41:1 The LORD sustains him on his sickbed; in his illness you restore him to full health. --- They should be setting up a sterile field in about 45 mins to prep for the trial. Pray for Noah's heart, body, and mind.
No surgical procedure has started yet, but the ECMO cannulas are clamped so he is doing things on his own. His CVP went up a little so they are going to watch him for like 5 minutes before they continue with the procedure. So far things look good. They have also turned the paralytic back on so that when he is off ECMO ...completely, his heart doesn't have to work so hard.
They have started nitrous to help dilate his PA's. They are prepping his chest and Dr Michell is scrubbing in. He is also being paced to help transition from ECMO. Things are going well.
They have decided to do an echo before they open his chest. Still going smoothly.
NOW they are scrubbing him. They were trying to figure out why his PA pressure was so high, this is what the echo was done for. They have also recently stopped pacing him and his heart rate is in the 150s. They will be opening him up in a moment, clean out his chest, and remove the ECMO cannulas. PTL things are going well!!!!!!!
They are finishing up and working on getting the ECMO cannulas out!! Thank you Jesus, for answering prayers around the world this morning. Please keep praying!!

They are done!! The cannulas are out. They had some rhythm issues that were resolved after they had suctioned his airways. His chest is being left open so they would have a fast and easy access if the situation called for intervention and they have 'purse strings' (which are sutures that are the 'plug outlets' for the ECMO cannulas). Dr Michell said that he was concerned that the pexy had something to contribute to his cardiac arrest, so he will be re-evaluating his airway later this week to see if it is something that still needs to be done. But we will "cross that bridge when we get to it". He is being left on the paralytic and sedation and in a couple days, they will wake him up a little to determine his neurological state. Dr Michell is going out of town for the night but the other CV surgeon knows Noah's case so he is in good hands tonight.
So, right now they are cleaning him up. They are keeping a VERY close eye on him for the next couple of hours. In a couple days, if... no, WHEN Noah shows signs of recovery, they will close up the purse strings and close his chest.
Ok.. I am exhausted! Zzzzzzzzzzzzzzzzz............
Monday, November 8, 2010
Today, they did a short trial run of turning down the ECMO. Noah did kind of 'okay'. His renal saturation's dropped to the high 40s but slowly started to go into the 50's. And this was done with him NOT on milrinon (the medicine that helps his heart function). So that is a good sign. The paralytic was turned off earlier this morning. He has not started moving yet, but he is still under a lot of sedation. About an hour or 2 ago, the machine was showing signs that there was a lot less volume in it so they gave him more blood. They also tried turning down the flow on ECMO to see if that would help, and it has. And this is actually a GREAT sign because that means we are closer to having him come off the ECMO tomorrow! Keep praying!!

Thank you to all who have visited today and for the gifts and meals! Can't wait to dig into them! :)
Sunday, November 7, 2010

For those who have been asking.....

If you want to send packages, get well cards or anything, you can send them to his room

Childrens Hospital of Wisconsin
c/o Noah Solomon room #W317
9000 West Wisconsin Ave
Wauwatosa, WI 53226

The day of Noah's heart surgery, I went to parent art therapy and had painted heart shaped box that has a lid. I would LOVE to fill it with little messages from all who are praying for Noah so, when he is older, he can read them and know how many lives he has blessed. Please send all messages to the address above! And please pass the info on to your friends. Thank you, Noah's Mommy :)
Noah had a relatively good day today. His ECMO dressing had started pooling around the seams and seeping out the edges a little more today, so they actually went back in his chest to explore. They cleaned out a LOT of clots in the chest and chest tubes and now his chest tubes are draining more efficiently. His chest is now a little more closed after the cleaning. They have started slowly warming him about an hour and a half ago. The goal is for tomorrow morning, to turn off his paralytic. He is still on a lot of pain and sedation control, so he should not move as much. They are also going to try weening down his support tomorrow afternoon some time. He has behaved nicely today :)

Good night! New update will be later in the afternoon tomorrow. There will most likely NOT be a morning update.
No real changes in his recovery plan. He is doing good though. His kidney function is getting better. His heart rate is coming down and is in a nice steady rhythm. So overall, his body is making a nice slow recovery from the trauma just 2 days ago. They will begin to warm his body up slowly starting tonight at 8pm. His paralytic will be turned off tomorrow morning and try weening down the ECMO just to see how he will do. He is still on a really good dose of Fentanyl and Ativan, so he still won't be moving much but he will still be comfortable. Last night, I noticed that he is starting to retain a little fluid which I am surprised it took this long to show up! His ECMO dressing may be cleaned out and changed later today.
As always, thank you for your continued prayers. Love from the Solomon's :)

SN: I REALLY can't wait to get my baby back!!
Saturday, November 6, 2010
The excessive bleeding has slowed, if not, stopped, so they will not be going back in his chest today. They are leaving him on the ECMO for a few days, at least. His pressures are better and so is his urine output. Overall he is more stable than last night. He is responsive (with his BP) when they do cares, so that is a great sign! His pupils are really small and that means he is nicely sedated and comfortable. The echo last night showed that his heart function has decreased but that is expected with the episodes he had yesterday. His Grandpa Solomon arrived earlier this morning!!!! This is the first (but NOT last) time that Noah gets to 'meet' his grandpa. We are so grateful for the Lord allowing him to be here. Noah's Mimi and Aunt Ami and Uncle Chad are driving up here as well. Can't wait to see them. I was a little bummed when I heard they will be leaving CJ and Lorali at their grandmas ... I was looking forward to getting to hold them :/ But I understand. So if anyone would like to donate their babies for Mommy Therapy so I can hold and love on them, I would love it :D

Thank you, as always, for following us on this God led journey and for continuing the prayers for Noah's recovery.
Friday, November 5, 2010


UPDATE: One person is doing compressions directly on his heart, one is bagging him to give him O2 to his body and his brain, and Dr. Mitchel is hooking up the canulas from the ECMO to his heart. **I am udating my status for now. when everything is done, I will do one big update on the blog** Please share this info.

UPDATE: One person is doing compressions directly on his heart, one is bagging him to give him O2 to his body and his brain, and Dr. Mitchel is hooking up the canulas from the ECMO to his heart. **I am udating my status for now. when everything is done, I will do one big update on the blog** Please share this info. ALSO: They will not know how his brain was effected until a day or 2 from now. So please pray that we still have the same Noah when he is healed!

UPDATE: Noah is now on ECMO, and is stabilized. The ECMO is doing most of the pumping, allowing his heart to relax, and they have added a pacer to establish the proper rhythm so that the muscle gets used to contracting. Noah received compressions and bagging for over an hour. Because of this, there is a risk of stroke and organ deprivation. They are doing an echo now to confirm the VSD is still intact, and will do tests tomorrow to verify the brain function. We wont know for certain until Noah wakes up whether brain function is ok, but Dr. Mitchell spoke with us, and was extremely optimistic about Noah's prognosis. Please pray that Noah's brain and organs are ok. We are belieiving that God wants Noah to tell us his story some day! Tonight there will be a nurse in the room constantly to monitor Noah's condition, and there will be a constant rotation of techs for the ECMO machine until he is off it. Dr. Mitchell's opinion was that when they were doing suction to clear Noah's lungs the new pulmonary artery clamped down, making the back pressure on his right ventricle very high. Since up to this point the right ventricle has not had to function on its own (due to the VSD) it was a shock, and the RV slowed and lost pressure.

A BIG scare........

We just had a scare about 30 minutes ago. After they had turned off his paralytic, his temperature started climbing, his heart rate climbed, and his blood pressure started dropping. They a whole bunch of doctors came rushing in. They had restarted the paralytic and gave him a bolus of a blood product to help lower his heart rate which was in the 190's. They stood around him to watch how his numbers reacted. His blood pressure kept falling (40s/30s) and his heart rate started dropping quickly. A crash cart was brought in and a whole lot of other doctors and nurses. They had to do chest compressions for about 45 seconds. They turned his milrinon (a heart function med) back up and then he became stable again. They are keeping a close watch on him today. They are letting him recover from this traumatic episode and will not be weening anything today, so he is back to his original med settings and his cooling blanket has been turned back on. If he does good over night, they may possible turn off his paralytic tomorrow. Please continue to pray for Noah's recovery. Even though Noah did extremely well during his surgery, his repair was very complicated and is going to need more time to recover. Needless to say, Aaron and I will not be venturing out anytime soon. Noah is proving, once again, that he likes to do things on his own timing and does not like to be pushed.

12 hours post-op

Noah is doing great! He had a little bleeding last night when he came back from surgery... there are some small residual holes around the VSD patch that will eventually close on their own in a couple of days. The bleeding has slowed down and is starting to clear up. I am amazed at how well he looks this morning... For being in the OR for 12 hours yesterday, he should be VERY swollen, but he is not. Just a little puffy is all. They have already turned off his paralytic drip so by the end of today he should be able to move a little bit. He is on all the heart function meds until they are for certain his heart is doing well on its own. He has a fever but that is expected so they are giving him Tylenol and they have him on a cooling blanket.
Aaron and I did not go to sleep until around 1am and then had to wake up at 4am for x-ray. We are still tired and are trying to sleep but it is hard to. The hospital air is so dry that both Aaron and I woke up with dry lungs. We are going to go to the mall later after lunch to go to Build-A-Bear to make Noah the Heart Patch Bear! We are going to call him patches and give him a "stuff-day" of November 4, 2010! :)
Thursday, November 4, 2010

8:15pm CT

We just got to kiss Noah!! He was on his way to his ICU room and them stopped for a quick second so we could catch a glimpse of him. He looks GREAT!!!! Now they are hooking him up to his room monitors and ventilation machines so it will be another hour before we can go back to his room to settle for the night.

7:30pm CT

The pexy is done. The heart is done. Heart is beating on its own. Chest is CLOSED! No pacemakers. A little bit of bleeding that should seal in a couple days. He is being monitored on the OR still. He is stable! Surgery is DONE!!!!!!!!!!!!! Praise God!!!!! 12 hours in the OR so far! But my baby is strong!!!! Please continue to pray for his recovery. Noah is amazing his doctors!!!

updates 5:30pm AND 6:30pm CT

Sorry this update is a little late, I had went to art therapy for an hour while Aaron continued to wait for updates from the nurse.

5:30pm: The echo showed some bleeding so they are getting it under control. He is off bypass and no heart-block (where the electrical system of the heart is not functioning correctly causing the upper and lower chambers of the heart to beat at their own rhythms). They are warming his body.

6:30pm: The bleeding is under control and they are starting the last broncoscopy to look at the airways. Noah is stable and doing very well!

4:30pm CT

The heart repair is done! He is still on the bypass but being warmed up and then they will start his heart and do an echo to make sure there are no leaks or and additional holes they need to patch. Everything has gone super smooth so far! A BIG answer to our prayers!!!! Dr. Mitchel even said that his trachea malasia was not as bad as they were expecting! Another answered prayer!!!! So now we are waiting to hear back after the echo is done if they will need to go back in the heart to make any adjustments. Then if he is not too swollen, they will re-do the airway pexy.

I am filled with JOY!!! God is in this place and He is working through the surgeons and nurses. Thank you Jesus, for giving Dr. Mitchel the talent and knowledge to perform such a complex surgery!

Stay tuned!! :D

3:30pm CT

Still on bypass and they are now closing the VSD. He is still being a good boy. Things are going smoothly. There are about 5 or 6 more things Dr. Mitchel needs to do with his heart.
I still feel pretty peaceful. I have a lot of friendly distractions... Thank you for the friends that are chatting with me and making me laugh. It is good therapy! :)

2:30pm CT

On bypass for the past hour and 25 minutes. His body temperature is 18 degrees Celsius which is 64.4 degrees Fahrenheit. This body cooling is done to help his body function under less oxygen while his heart is asleep and being worked on. He is "being a very good boy" and his vitals are great.

Next update to come in an hour.

1:30pm CT

Noah, for the past 20 minutes, is now on bypass and his heart is now "asleep" and the repair is now started. The room is cooled and Noah is "vacationing in the Arctic" lol. Vitals are stable. We are possibly looking at 2 - 3 hours on bypass. He is doing very well!!

The waiting room is starting to empty a bit. Maybe 6 families in here now. I am feeling exhausted and really miss my pillow right now! lol

Stay tuned.

12:30pm CT

Noah's chest is open and they are still working on getting all the important lines and tubes put it. Dr. Mitchell is exploring his chest/heart before he hooks him up to the bypass machine. The room is still warm so we have a while before they have him on bypass. Once he is on bypass, Dr. Mitchell will begin working on his heart. His vitals are stable and he is doing well.

And now it is all a waiting game.

Noah has been in the OR since 8:30 am CT. The last update we got, they are still working on getting all the lines in and prepping for the initial broncoscopy. It was strange handing him off. I thought for sure I would break down and cry. Instead I gave him lots of kisses and hugs and smiled. It was almost like I was TRYING to feel emotional and cry but something in me was not letting me do that... It is God who is holding me together and giving me peace. Satan has no grip on me today, and what a day he would have had if God was not in control. Because of the peace I am feeling, I KNOW Noah is going to do fabulous! No worrying needed! Thank you Jesus!
I am sitting on the floor in the surgery family waiting room... It is a huge brand new room and there are MANY families in here waiting just like I am. I pray the the peace I feel right now, that these families feel it also. Will you all reading this please pray for us all here as well?? Thank you once again for following us on our God led journey. Stay tuned for more updates throughout the day. And if you have not already, add this blog to your email list so you can get notification of any new posts I have.
Wednesday, November 3, 2010

How is THAT for some shock value?!?!

We just signed papers for consent for Noah's open heart surgery. Which by the way will be TOMORROW MORNING! A spot on the surgery schedule JUST opened up and Noah got first dibs. This is great because we were worried that he would catch something between now and Monday. He is at his prime health right now and this gives him a SUPER advantage!

He is now getting all the blood work, EKG, and other pre-op testing done tonight. They will try for an IV later and give him some IV steroids in preparation.

He is first surgical case tomorrow and it will be the longest surgery for him yet. Most likely being all day.

Please pray for Aaron and I to sleep as peacefully as we can tonight. We are going to need our rest. Pray for them to get an IV with as few pokes as possible. And last but CERTAINLY not least, please pray for God's hand in this to be the most evident! Thank you.
Debi Aaron and Baby Noah
Monday, November 1, 2010
Welcome back to Noah's blog! Thank you for following us through our journey and for your continued thoughts and prayers!

I know it has been a long time since we have updated Noah's blog. We will be updating on a more regular basis for a while from here on out.

A week from today, our sweet baby boy will be undergoing his 4th major surgery. This one being the most complex surgery thus far. His heart surgeon came to talk with me the other day about the procedures will be done. It is a TON of information and I will do my best to write as much information about it as I can.

The main and most important step with his heart repair is closing the VSD (the whole between his right and left ventricles). The way he described that procedure is he will kind of make it a tunnel to Noah's pulmonary artery instead of patching the hole and rerouting his PA. He said that in Noah's case, the VSD location makes it easier to do that then in other DORV patients. His next step, he will do a left PA plasty. Basically, manipulating his left PA to open it up, with either a stent or ballooning it open. (There was something else... kind of lost track of my thought... umm....)

He also talked about his right PA and whether or not he will be doing anything with it, seeing as Noah's right lung is so small. Changing the right PA would be extremely extensive and would change the amount of blood flow significantly. He said that he may just leave his right lung alone and focus more on his left 'good' lung and make it as strong as possible. The only thing, he said later down the road, his right lung may start to cause problems, in which case, he would take part of his lung out.

The last step to Noah's repair is his airways. Back in January, Noah had his airway pexy surgery. For his heart repair, Dr. Mitchel will be cutting down the old sutures in order to get to his heart. After the heart is done, they will do a broncoscopy and he will redo the pexy and make adjustments so his trachea and left bronchus are more open. But, if his chest cavity is too swollen after they are done with the heart, Dr. Mitchel will have to leave his chest open and do the pexy and close him up a few days later.

I think that is all the info... that I can remember anyway :)

Noah is the first surgical case that day. And his surgery will pretty much be all day. Dr Mitchel said the heart will be asleep for approximately 3 hours and he will be on bypass until they restart his heart. That is after the 2 to 3 hour prepping of the heart (i.e. cutting the pexy down and opening his chest). Then even longer work on the PA and then the redo of the pexy.

This past week, Noah has been super happy and wanting to play and go on walks ALL day long! It is going to be VERY difficult to "hand him over" to the surgical team and get him back sedated and intubated with a fresh cut down his chest and bed ridden for a while. But I know this must be done so we can continue to have our happy sweet boy running circles around us!
Sunday, May 16, 2010

Todays update

These past couple of days have been really rough and scary. Noah was on the verge of needing to be intubated. They believe he is having so much trouble breathing because of the inflammation due to the para fluenza. He has been on a steroid for a couple days now and it is helping the inflammation and he is also on highflow. Two days ago, I was holding Noah and he was sleeping in my arms. Then he started to fuss a little so I was changing positions to see if he would be more comfortable. He started getting even more mad and started to retract so I set him in his crib to try to soothe him. He started thrashing around and screaming so I went out in the hall to get his nurse to see if she could help me calm him down and I turned back around and he had already started turning blue. Then a bunch of doctors come rushing in and started bagging him. His heart rate was elevated and his O2 saturation level was below 40%. VERY VERY scary! And because his IV had come out the previous day, they started trying for an IV... I think I counted 8 or 9 times and no success! So they decided to let him calm down and later send him to get a PICC line. After his PICC placement, they made him NPO (meaning he could not eat) for the rest of the night for if he needed intubation, his stomach would already be empty and would not risk aspiration. By morning, he was very hungry and fussy so the restarted his feeds. We gave him his first bottle and he chugged it! First time in a very LONG time that he has taken his whole bottle by mouth! Ever since then he has been asking for a bottle every 2 1/2 hours and has been drinking the WHOLE thing! This is amazing and I hope he keeps the momentum going! Sometimes he will still ask for more so we have started offering him an extra ounce and he finishes that too!

So... after rounds this morning, they are starting to ween him off the highflow and steroid. And as long as his breathing becomes more stable, they will not do a broncoscopy and just let this virus finish its course. Please keep praying for continued healing and that our little Noah returns to his happy spirits and health. Thank you!
Thursday, May 13, 2010

The good and the bad.

Today has been a good day and a not so good day.
Good: Noah is back on his full feeds today and for the first time.... he took all three feeds today BY MOUTH!!! I did not have to put any of it through his tube! YAY!!! AND he did this while he is still not feeling 100%! I am so proud of him!
Bad: Noah's fluoroscopy showed narrowing in his trachea. This could be inflamation due to the paraflu or it could mean that some sutures from the airway surgery he had done back in January have broken from all the hard coughing he has been doing. Their plan for him is to wait out the virus over the weekend and possibly do a broncoscopy on Monday to determin if they should re-do the surgery. I am really nervous. His breathing has gotten a little worse the past two days. Doesn't he know that his FIRST BIRTHDAY is NEXT MONTH?!?!?! He sure knows how to make me jump through hoops!
Anyway.. sorry for the short update.. I am exhausted from lack of sleep and I can't remember eveerything from today. I should start writing notes through out the day ;) lol Good Night!
Tuesday, May 11, 2010

Once again... :/

We are back up at Children's again. Noah is not doing so great. His respiratory virus is way worse this week. The antibiotics he was on did not doing anything to help him. He does not have pneumonia, thank God, but his cough is really raspy and congested. His breathing is labored at times and he struggles a little. When he is sleeping he breathes better and is more comfortable, but when he is awake he moans and has quite a bit of discomfort. He is still showing signs of hunger and thirst which is great, we just need him to get over the vomiting. We are giving him pedialyte when he "asks" for a bottle and he drinks it right up! So far, so good... I think when he "asks" for his next bottle, we can try half strength formula. He is currently getting maintenance fluids through his IV.

This morning during rounds, Noah had just got done with a breathing treatment (done by a therapist I was not happy with) He was breathing really heavy and was limp and pale. The doctor on this week, took a look at him and said that if his breathing did not improve in an hour, he would need to be intubated. But as soon as I got him to relax and calm down, he was breathing better. They also took viral swabs and cultures, which means we are in isolation. They put him on helium to help dilate his airways... he sounds like a little itty bitty baby... or a baby chipmunk :) it is cute!

**update-- about 3 hours after I started writing this** ... Bad news is: one of the viral swabs came back positive for parafluenza so we will remain in isolation. Good news is: we now know the source of his sickness and can wait it out in the hospital and help keep him fluid balanced.

Pulomnology came by earlier today to talk to me about his airways. This was before the viral swab came back positive... The pulmonologist was concerned that the sutures that are lifting his trachea and PA's from the pexy surgery in January, have broken away from all the coughing and retching he has been doing this past week. They were planing on doing a fluoroscopy (which is a series of chest x-rays) to determine if his trachea is floppy. If it is, they will most likely do a scope down his throat to look at his airways. If they come to a conclusion that his sutures have in fact broke apart, then they will discuss with Dr Mitchell (his heart/airway surgeon) whether or not to re-do the pexy surgery. It is a strange feeling that she would be concerned about that because just last week I kept getting the feeling that some of the sutures did break! But because she told me this before the viral swab came back positive, I don't know if they will be doing the fluoroscopy anyway.

I am exhausted.

I feel like there is more information I forgot to mention... but I can not think right now. Just please pray for Noah and I, and Aaron too. Thank you so much!
Saturday, April 10, 2010

I could not be happier!!

I know it has been quite a while since I have updated... But for those who don't know yet... WE ARE HOME!!!!!!!!! We have been home for a week and a half now. We LOVE being home with the rest of our family! I will tell you this though, the first couple of days it felt strange to be home with Noah in my arms. And with the extra equipment (i.e. oxygen and CPAP machines) it has been a little overwhelming as well. But we are back to our normal routine and loving every second of it!
Noah missed his cousins and Auntie and Uncle. He was content to watching his cousins play in the living room and would laugh at their silliness. The first couple of days Noah and I camped out in our bedroom because everyone in the household was sick and it is extremely important that we keep him as healthy as possible. This is one of our bigger prayer requests.. that we will find a place of our own. Where we can spread out from just a one bedroom. We need our own space to keep Noah healthy and out of the hospital.
Today, Janelle Rodgers, ran a 13 mile marathon in honor of Noah. She sported a "Pray for Noah" shirt, hoodie, and button. She finished her marathon in 2 hours 18 minutes and 7 seconds! GREAT job and thank you so much Janelle!!!!!
Well... I am going to get off for now. Please continue to pray for Noah and us. Pray for Noah to stay healthy and out of the hospital until his heart surgery on the fall. Pray for Noah's feedings to improve so we can eventually stop the need for the g-tube and feeding pump. Please pray for his strength to improve so he can catch up with his fellow 9 month old friends! :) THANK YOU!!!!!!!!!!
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...

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He is getting so BIG!!!!

He is getting so BIG!!!!
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