Pray for Big Boy Noah!

Time for a REALLY great update...

2011-12-23T17:37:00.004-06:00

his month has had a few great accomplishments. The first being, Noah getting into the CVS (cyclic vomiting syndrome) clinic. He is now being seen by the top CVS specialist in the world! We now have some plans written down for prevention and rescues. Since then, I believe we have successfully prevented two cycles from happening/worsening!

There is a CVS Awareness walk this coming June in Milwaukee. A dear friend is planing to visit during this time and we are going to be walking for Noah!

Lately, Noah has been doing some amazing things. This past week, he has been pulling himself onto his knees using the coffee table. He is getting so strong! As of today, he has started pulling himself to stand! Here is the video to prove it..... :D

First heart cath since December 2010....

2011-11-21T21:14:00.002-06:00

11:30am - They took our sweet boy down to the cath lab. He got a generous dose of versed just before they took him through the doors. Funny how quickly those meds work!

1:20pm - First update: Intubation went very smoothly and he is breathing comfortably on the machine. They were able to get access through his subclavian!!! THANK YOU JESUS! They are now beginning to take pressure measurements and are going to test his lungs with nitric oxide, which is a vaso dilator, to see if his body is responsive and it will help with the pressures in his heart and lungs. Then they will test him with Sildenaifal to see if this will also benefit his heart and lungs.

1:50pm - They JUST finished the procedure! God is amazing and faithful! Noah did very well through the whole procedure and was stable throughout! They are now doing an ECHO while he is still sedated and then he will be brought back up to his room to recover! Now we are just waiting for the doctor to come up and talk to us about the results! Thank you Jesus for answered prayers!

Dr Gudaunsky, the heart cath doctor, said that the residual VSD is "significantly smaller that it was a year ago" and that he has "absolutely no pulmonary hypertension" PRAISE GOD!!!!!!!!!!!!!! His pressures in his heart are balanced beautifully and, in Dr G's words, "his heart is in the BEST condition it has EVER been!" AMEN!! He did say that his left pulmonary artery is a little narrower but not to the point of doing anything to it right now. They will talk to his cardiologist and see what she thinks would be the best approach to correcting it. But for now, he can go home and stay home for a while with no "planned admissions".

About 4 hours after Noah came back to his room, his nurse and I noticed his lower abdomen was distended and hard. It was concerning because when they put the arterial line in his groin, they had to go in a little higher than normal and that increases risks of bleeding into his body cavity... the main reason they are keeping him sedated and still until 6 hours after the cath was done. We had the ICU doctor come in and take a look at him and he said that it could be his bladder and told the nurse to straight cath him to see if he had urine. He said that if we didn't get any urine, then he would want a CT done. But, God answered our prayer again, and it was just his very full bladder. The nurse was able to get a little more than 100cc's out with the straight cath and about an hour later he peed on his own.

9:15pm - His sedation drip is now off and he is already trying to sit up. My boy is such a fighter! They will let him wake up more and at midnight they are going to start a pedialyte drip over night and then give him his first feed in the morning. We possibly could go home tomorrow, if not, Wednesday!!! In time for Thanksgiving!!

Caught off guard...

2011-11-03T20:33:00.002-05:00

Earlier today, Noah had a cardiology evaluation with the heart cath doctor. He talked to us about Noah's case and whether he would be a candidate for a medication that could help with him coming off his O2. From the sound of it, he may not be. But before they would make any decisions, Noah will need a heart cath to determine if the med would actually work for him. They also need to get a better understanding of the pressures in his heart and lungs. This heart cath will most likely be scheduled before the end of the year. This is what caught me off guard today. I didn't think it would be so soon. But God is always in control and I need to keep reminding myself and relinquishing that control. Something else that was "mentioned" was the fact that the cath could possibly show a need for additional heart surgery. We are praying against this but if this is what needs to be done, then, again, we need to let God steer us in the right direction. It is FAR from "easy" to begin thinking of these coming plans. The information we received today, came with nervous feelings and a little sadness.

Tomorrow marks one year since the initial open heart surgery. I can not believe it has been a year already! And then, Saturday, marks a year since Noah's heart stopped beating for over 40 minutes. Look at how far he has come! God gave us a miracle! And to see Noah today, terrorizing our home and climbing into our entertainment center and learning new words... well, I have never witnessed anything more miraculous!
I love you, Noah Michael.

Been a while ...

2011-10-16T08:47:00.002-05:00

It has been a while since I have updated on Noah. There has been a ton of things going on that I have been taking needed breaks from computer time.

I don't remember if I mentioned just how many times Noah was admitted last month, but He had a total of 6 admissions in 2 months. Always for his cyclic vomiting. It was getting very frustrating and sad. But now, he has been home for 3 weeks and is doing great! He has been consistently gaining weight and learning lots of new words! He is so close to being 23 pounds! It took us a LOOOONNNNNNNG time to get him to 22 pounds and now he is flying through. I am thinking growth spurt!

Noah now has a Power Port. This has been a true God send. With his new port, we are able to give him fluids right away when he gets into one of his CVS episodes. No more useless pokes! We also are able to get blood work much faster and easier. He gets his port accessed once a week for flushing to prevent it from clotting.

Noah has a stander for PT now. He is actually very tolerant of the device... as long as we distract him with his favorite movie or something.

This is helping build his legs and hip strength so that he will eventually be able to stand on his own. He had his second round of Botox injections last week for his foot drop. His foot is STILL bad and I am getting nervous that they will have to do surgery to fix it.

Noah had a cardiology appointment a few days ago. His last ECHO showed that the residual VSD is actually shunting both ways. This could be part of the reason he is still requiring O2. We also found out that there is a medication that could possibly take over the O2 need. The only thing about that is it could put him into heart failure. So, in a couple weeks he is going to be evaluated by Dr Kirkpatrick to see what tests need to be done. He will most likely need a heart cath next spring to measure the pressures in his heart.

So, now that fall is here, we are going to be keeping Noah home and away from company as much as possible. He has already developed a cough but hopefully it will not become anything more.

Well... I should get off for now. Hope all is well you everyone!

Don't take life and family for granted

2011-08-26T11:39:00.003-05:00

One of the many challenges for our family happens to be family portraits. I know, I know... with what we have been through these past two years, family portraits shouldn't be on this "list". But it is. And probably not in the way that immediately comes to your mind. What are YOUR challenges when it comes to this? Getting everyone to smile? Making sure everyone is looking in the same direction? Do we all match? No one is blinking? ...... For us, our only real challenge is making sure we are all there. All three of us. That is the only thing I truly care about. I have been trying and planing our family portraits for the last year and a half. Every time I would set a date, Noah ended up back in the hospital, so we needed to push it back further. ..... Until yesterday. Yesterday, we had the opportunity to meet up with one of my dear friends from MOPS. Her name is Stevie and she has 3 beautiful children and one handsome (I am SURE) little boy on the way. In fact, he is due to be born in just 3 weeks! SO.. we squeezed in our session. Stevie has been a blessing to me. When I was living at the hospital with Noah, she drove all the way up to get me and take me to lunch just so I could have a break. She has a big and generous heart and I am so blessed that God has placed her in my life. I love you Stevie!

So, without further ado, here are the beautiful photos she took of our family!

So Blessed!

2011-08-23T18:03:00.002-05:00

We want to make a huge shout out to Tracey, from Little Bitty Design Studio, for re-designing Noah's blog!! It is beautiful and JUST what I wanted! Thank you from the bottom of our Hearts!

If you would like you blog have a new look, please check out her page and let her know Noah's Mommy, Debi, sent you! You can find her by clicking her button on the right side of my page!!!

You're All Set!

2011-08-23T10:33:00.001-05:00

Happy Blogging!

Yet ANOTHER stay...

2011-08-22T09:56:00.003-05:00

Once again, Noah landed himself in the ICU for a few days. This past Thursday, he had a scheduled MRI as a follow up from his previous MRI back in December. We have not received the results yet, but this appointment triggered another vomiting episode. Although he is not "officially" diagnosed yet, they believe he has cyclic vomiting syndrome (CVS).

This month has been extremely stressful on Noah. He has had many tests and appointments this month and the traveling and changing of his routine and feed schedule has taken a toll on him. We are trying to find the right combination of meds/routines to help Noah with his CVS. Trying to eliminate the triggers as much as we can. Trying to find what works with his body as far as preventing another CVS episode or to lessen the severity of it. It is extremely difficult. It is very draining on Aaron and I, not to mention, Noah!

When we got admitted early morning on Friday, I knew Noah needed IV fluids. But with his IV access being impossible, I requested they not try for the IV and just go ahead and put a PICC line in. So, around 2:30 that afternoon, he went down to IR and had his PICC placed. They gave him Versed through the nose to calm his nerves and once he was in IR, they gave him an IM shot of Ketamine to sedate him. However, he had a delayed reaction to the Ketamine, so they gave him a second dose. When he came back to his room, he was still out and did not FULLY wake up until around 10 am Saturday morning!

They started him on a D10 drip (basically a sugar drip) and a few bolus' of saline fluids. The D10 was started to boost his sugar level... he was at 45. They also use D10 as a rescue fluid for patients with CVS. I think this will be one of our tricks for when he gets into one of his episodes.. giving his juice instead of just pedialyte.

So, anyway, Noah is being discharged today. He will be getting a dose of IV Zofran and then the PICC will be pulled. I can not wait to get home!

A few hours that turned into an over night stay...

2011-08-13T10:24:00.003-05:00

Noah was scheduled to have a broncoscopy, endoscopy, and an ECHO early Thursday morning. We had to be at Childrens by 6am to check in at Day Surgery. They got checked in and took vitals and such, then around 7:45am they took him back to the OR.

First, the pulmonary team did the broncoscopy. The went in through his nose and looked at his vocal cords to make sure they were functioning properly. Then they numbed the cords and pushed past them and into his trachea. Vocal cords look great and there was no inflammation. The trachea was not perfectly round like a "normal" trachea should be, but the good news is that it is improving and it no longer touches... it is just an oval shape. It does pulse, however, which means that his heart/vessels are still compressing his airways a bit, but nothing major as of now. He may later down the road need additional airway surgery to try to shift things around, but that all depends on how he grows. Then they went into his lungs through the bronchus. His left bronchus is still a tiny bit weak but that is also improving. They did find some fluid in his right lung that they washed out and sent to the labs to test. Other than that, the broncoscopy went without any hiccups.

Next, the GI team started the endoscopy. Again, they went through his nose and into his stomach. They did not have to intubate him for this procedure since he did so well with the broncoscopy. His esophagus looks great and there was no acid reflux damage noted so his reflux meds are doing their job. His fistula repair site is looking good... so no need for any dilation of the esophagus at this time. When they entered his stomach, they found a pancreatic rest, which is basically a pancreatic cell that has latched to his stomach wall and formed a nodule near the opening of his stomach. This may or may not be the cause of his sicklet vomiting, so they will be discussing another test/ultrasound in the future. Dr. Tipnis said he also wants to have a swallow study done soon since Noah is taking most of his formula by mouth.

After the endoscopy was done, the cardiology team came in to do the ECHO while he was still sleeping from the anesthesia. We do not have the results from the ECHO yet, so there is nothing to report from that at this time.

Noah came back to his recovery room about 9:30am and started waking up. We gave him about an hour before we tried a sippy cup but he threw it up right away. He threw up quite a few times and his O2 started dropping. We had to increase his O2 flow rate from a half liter to 3 liters. His heart rate was elevated and his breathing was fast. So they told us that they would be keeping him over night for observation. Up to West 5 we went. ::sigh:: Noah doesn't like to make things easy. BUT he did well over night and they sent us home around 9:45 the following morning. 27 hours... what should have been only 3 to 4 hours. Oh well. :)

Another short hospital stay...

2011-07-22T10:22:00.002-05:00

This past weekend, we went down to my parent's house in Illinois. It's about a 45 minute drive. And wouldn't you know, Noah started one of his vomiting episodes. We thought we could help him control it a bit but then he wouldn't keep ANYTHING down and started vomiting every 2 to 5 minutes. So we decided that it was time to leave and take him to Childrens. We were already out to lunch with my family so instead of going back to their house to pack our stuff, we knew it was more important to take him straight to Childrens. We are bout half way there (we had just got in to Racine County) when we checked his O2 tank level. Of course it was on the last bit of oxygen, so we called his home care nurse and she told us to pull over and call for an ambulance. They were there in less than 5 minutes and took us straight to the Childrens ER. When we get there, they did their assessment and had some nurses try for an IV. My.least.favorite.part. NO success... even after 10? tries! THEN they wanted to draw blood for blood work... HELLO!!!! He is dehydrated!!! If you can't get an IV, what makes you think you are going to get blood?!?! Meanwhile, a doctor from the ICU came down and said that they already have a room for him but that they are just waiting for the ER people to finish their routine. FIVE HOURS LATER... they FINALLY decide to take us up to his room. **sigh** My poor sweet boy had absolutely NO reserve left but they still kept trying to get blood. I was getting so frustrated. By this time he was ready to take his sippy cup again and because they were not able to get an IV, they gave us the okay to let him drink. He kept it down with a little help from Zophran... I had NEVER seen him drink so fast! They let him have an adult sized hospital bed so that Aaron or I could snuggle with him. I think that having one of use with him in bed actually helped him get better faster. So we went through the whole routine of getting him back on his regular pediasure feedings.. it only took a day and a half to get him on full strength feeds. The day before we were discharged, one of the GI doctors came up to talk to us about these spells that he keeps having. They suspect that he not only has dysodonomia (sp?) where his nervous system is out of whack, but also has a condition called sicklet (sp?) vomiting where he has stress induced migraines that cause him to vomit uncontrollably. There are meds that they can give him to help control it but these meds can effect his heart so they would need his cardiologist's approval. They told us that the next time he has one of these spells again, to bring him in for blood work.

So, over all, he was only inpatient from Saturday to Tuesday. He has since then been his normal happy stinker self. I just wish these spells would stay away but I am pretty sure this is something we will have to deal with for a while.

My Two Year Old!!!

2011-06-23T22:53:00.004-05:00

Noah turned the mighty "Two" yesterday!!! I still can not believe how the first two years have flew by. And I am pretty sure I don't have to say it, but his first 2 years were amazing, scary, fun, sad, unforgettable, heart breaking, miracle filled, covered in prayer and held in God's ever capable hands. Yesterday, Aaron and I were looking at old videos and photos... basically starting with his birth photos and working our way to the present. I teared up quite a few times. Both for the scary moments and the moments when God gave us another miracle to hang tightly to. Each and every milestone (and now repeated milestones) are treasured and never forgotten. In a way, his struggles have been a blessing to me... I say that because I have grown in Christ more now than ever before but also because I know I look at life differently and know how important it is to cherish those moments ... even the little everyday things.

Noah has had a total of 6 major surgeries. Two of them were life saving. I still have a hard time wrapping my head around that fact. Noah is a miracle. There is no better word for him. I thank Jesus for every second I have with Noah. I thank Him for the miracles. We are so blessed that God chose US to be his parents!

Now for a quick update because it is late and I am tired.

Noah had botox injections today to correct the foot drop. He received a total of four injections. Then we go in next Thursday to have his foot casted. He will have to have his foot re-casted once a week to achieve full range of motion again and it could take up to 8 weeks to correct. Then he will have a brace to wear at night so as to prevent it from returning. The doctors believe the foot drop was caused from his cardiac arrest. Next week I will start posting photos of the serial casting progress.

Thank you all for keeping us in your prayers! Love the Solomon's :)

OHHH!! I almost forgot!!!! Noah's birthday party in going to be July 9th from 2pm to 5pm. You all are welcome to stop by and see how my little man is doing!!!
The party will be held at:
Smolenski Park
438 S Stuart Rd
Racine, WI 53406

June is here!!

2011-06-05T15:45:00.002-05:00

I only have 17 days left before Noah turns 2! Time really flies.

We are still not in our apartment yet. Lots of things keep happening to prevent us from moving in. It is getting really frustrating. We have waited so long. I want to cry most days.

Last week, we all were in Michigan for my cousin's wedding. Noah decided that vacation was the perfect time to visit another hospital! Yup... he vomited himself into dehydration. The Bronson Hospital in Kalamazoo only kept him for a night. He was let out just in time to go to the wedding. Silly stinker! Then the day we left to come back home, my grandparents took us to the Binder Park Zoo. AWESOME zoo!!! I love it there! I could stay out in "Africa" with the giraffes ALL day! Noah actually was brave enough to reach out and pet it's nose while I fed it. SO cool!

Now we are back "home". Two days ago, I decided that it was time to start switching Noah's drip feeds to bolus during the day. So far so good! I am so happy about that! I really hope we can get him to 3 bolus' during the day and shorten the run time on them so as to create the feeling of hunger more so that he will actually drink/eat by mouth. Pretty soon we will be able to start giving Noah breaks from his O2. Slowly he is getting more freedom.

I am sick once again. I feel horrible. I really hope Noah does not catch what I have... It is getting difficult to stay away from him when all he wants to do is "eat" my eyelashes... Yes... that is his new obsession with my eyelashes. He likes me to bat my lashes on his lips. Sometimes he will even close his lips on my lashes and pull back. Such a silly boy :)

Please pray for my health to return. For our apartment to be ready to move into this week! For Noah's continued progress. Thank you!

2011-05-14T14:42:00.002-05:00

This past week has been a hectic one. Noah had been going through one of his vomiting spells... only, this time, it lasted a bit longer than normal. He has lost a lot of weight as well. He lost 13 ounces this last week. He is actually under his weight that he was before he was admitted back in October. When he was discharged on February 23rd, he weighed close to 21 lbs... He now weighs 18 lbs 1 oz. He has become so thin. I have been getting so frustrated with the team that has been "helping" me with his weight progress. But we seem to finally have a game plan. I will say that this past week, Noah has become even more active, therefore is using up the calories he does get. If he does not start gaining .. or even maintaining a weight, that they will need him to be re-admitted for failure to thrive. That is exactly what he does NOT need! He needs to be home and STAY home! Noah was also started on a new med to eliminate this pattern of vomit spells he has. One of the side effects of this med is that it can make you hungry. Those are the 2 reasons he was started on it. And today it seems to be kicking in! he has been on it for a week and last night, he actually ATE! BY MOUTH! PLEASE PLEASE PLEASE... pray that his body keeps responding the way it is and that we can fatten him up!

In other news... Aaron and I are waiting on the Lord to FINALLY open the door to our place! It is coming soon!

Rough couple of weeks...

2011-05-01T06:57:00.003-05:00

A nasty bought of sickness has made it's rounds in our household over the past couple of weeks. Noah and I have had respiratory crud a few weeks ago that is taking it's sweet time to leave. Then a few days ago, I caught a stomach virus from somewhere (I have NO clue where!) that lasted for 24 hours and left me 8 pounds lighter and with less energy. Then it made it's way to poor little Lorali (Noah's cousin from SC) who didn't have it as long as I did but passed it to Aaron and Ami, my sister-in-law, and then on to CJ (Noah's other SC cousin) who is still feeling yucky today. This is their last day here before they drive back to SC this afternoon. :( I am going to miss having them here... I just wish this visit wasn't so yucky. So far, it seems to have skipped over Noah... I guess that flu shot he got has prevented it. Thank you, Lord!

On top of Noah's respiratory illness, he has not gained any weight in over 3 weeks. In fact, he has consistently lost weight every week. It is really frustrating and I can not help but feel like I am failing to see what we are doing wrong. I know I shouldn't feel that way... no need to reassure me of this, but it is just how I feel and it is because I am a mother. A mother of a special little boy. A mother of a miracle. Noah IS a miracle... God has proven that time, and time again. So, when I start feeling like a failure, I need to remember ALL what life has thrown at Noah and he has overcome it all. He keeps on trucking along. He keeps fighting. I am so blessed to have him and to be his mother.

Noah is a LOT more mobile. He rolls EVERYWHERE and gets into EVERYTHING! He has also learned how to throw a toddler tantrum :) I (secretly) am absolutely LOVING it too! I wouldn't have it any other way! He deserves to throw fits :)... for a little while at least. HA!

He has been so sweet on me. He loves to give me Eskimo kisses and regular sloppy kisses all the time! He still plays with my eyelashes when he is tired and falling asleep. He likes to pet my face and give me the sweetest smile. Then he becomes a stinker and starts smacking me... also while giving me the sweetest smile. My late Grandma Pownell would call them "love taps" :) He does love me. And I love him.

Noah's second birthday is creeping up on me. I can not believe we are about to have a TWO year old! June 22nd! Wow....

Until next update, praying you all are enjoying the Spring and are healthy! Thank you for the continued prayers... we are always in need of them and are so very grateful.

CHOWDA clinic update

2011-04-19T20:22:00.003-05:00

Noah had a long day up at Childrens for clinic visits. He was seen by ENT, GI, Pulmonary, and Speech... in other words, CHOWDA (Childrens Hospital Of Wisconsin Digestive and Airway clinic). For ENT he had a scope done to look at his vocal cords. Compared to his last scope done when he was inpatient, his vocal cords have greatly improved and are working great with no gaps! For GI, he received a new g-tube design. Hoping this new design keeps him from leaking so bad. It is also more flush with his belly so it does not stick out so far... MUCH nicer! He is also being started on a new med that triggers the nerves in his stomach to expand the size of his stomach. This is being started to help with the vomiting pattern that he seems to have but also to kick start his appetite. For pulmonary, we discussed his breathing and about his O2 use. She told us that she wants us to wait till June before we start giving him breaks from it during the day. She said that as he gets trunk strength back that his breathing will get better, lessening his need for additional O2. So I am thinking about a year more of him being on oxygen. He will be getting an airway study done within the next 2 to 3 weeks as well as a swallow study for Speech. What a LONG day it was. All in all, it was a good clinical visit.

Waiting on the sunshine....

2011-04-08T12:47:00.002-05:00

I am totally ready for the weather to warm and the sun to come out. It will sure help Noah and I feel better. We are both sick with some kind of cold/sinus infection. We are miserable. Noah is on a 10 day antibiotic. Pray that Aaron stays healthy.
Noah has been home for a month and a half now. His strength is slowly starting to come back. He can sit up unassisted again, but gets tired after about 30 minutes and then starts to lay down again. He is so silly too. He loves music and loves to dance to it. It is so fun to watch him "dance".
He is still on a continuous drip for feeds. We are working on adjusting it so he can have breaks throughout the day so he can have a little more freedom to roll around.
The Diazapam is almost half done with its ween. He is doing good with it coming off. Next month we go in to have Noah's botox and serial casting started on his right foot. Praying that it will help him.

I can't believe that I will have a TWO YEAR OLD in 2 1/2 months! I need to start planing his party :)

Please continue to pray for our health to return quickly. Thank you.

Clinic appointments update

2011-03-24T19:49:00.002-05:00

Yesterday, Noah had 3 different appointments at Childrens. Our first stop was with Rehab. The checked his joints and muscle tone. They asked how he was doing with his therapies and what we were working on. I had them look at his right foot because he has had horrible foot drop ever since after his surgery. We have been having almost no luck getting his foot back to neutral position. The splint we have been using doesn't seem to help all that much. The looked at his foot and checked his range of motion. Their solution is to do Botox injections into the muscles to help relax them. Then they will do serial casting. So in May, he will get his first Botox injection and serial cast and we will have to come back once a week to have his foot re-cast for up to 4 to 6 weeks. We also finally have a weening schedule for his Diazapam.
Our next appointment was with Special needs. We went over meds and such. We made sure we had all our follow up appointments. I really LOVE that Noah is part of this program. It is great to have others advocate with and for us. It gives us a breath of fresh air to know we don't have to go at this alone. They also ordered a chest x-ray to make sure that his congestion was not in his lungs. According to the x-ray, his lungs are actually better than his previous one! Praise the Lord!
Our Last appointment was with GI. This appointment was made because of the 2 pound loss last week. Although he has not vomited in a week, his weight gain didn't show the greatest improvement. Noah has a home care nurse visit tomorrow and we will see if our adjustment in his feeding plan has been the trick. We also we told that some patients with MIC-Key buttons will be getting a new button design that will help with g-tube leakage and is more low profile. He should be getting his new button next month.
Thank you for your continued prayers. Please pray that Noah gains weight and we can stay away from another admission.

Almost a month!!

2011-03-19T13:32:00.002-05:00

This coming Wednesday will be a full month that Noah has been home with us! It is almost strange to say that it is almost like this last hospital stay was ages ago. It is great how quickly my mind has put it in the past and we can get on with our lives at home. While things have been great here at the home front, we have had quite a few scares and concerns. The other day, for instance, my sister and I were in the kitchen making dinner. I heard Noah cough like he had just thrown up, so I went out to the living room to check on him. He looked up at me with a huge grin on his face but something was different. He did NOT throw up but as I quickly looked him over I had noticed that his hands and feet were blue (like 'blue baby' blue). I started freaking out and ran to get his pulse ox but by the time I got it on him he was already starting to pink back up and his O2 saturation was in the high 90's. After cardiology had called back, they said it could be that his cough could have caused his blood to shunt across the VSD. They were happy that the blue episode did not last long and that he recovered from it on his own and that he did not drop his O2.
The other concern we have had this past week and a half was how much Noah had been vomiting and his weight. In a week's time, he had lost 2 whole pounds. In a toddler his size and condition, that is HUGE. He now has a GI appointment on Wednesday. But in the mean time, Noah's Special Needs coordinator and I came up with a feeding plan that we thought would help with his vomiting so that he can get the fluids and calories he needs. So... instead of having him on the feeding pump 24/7 at 39cc's an hour, we altered it to run for 22 hours a day at 42cc's and hour with his 2 hour break between 1am and 3am. So far, this has been the trick! Yes, I lose even more sleep over this but I am willing to do and try anything to keep my boy home and healthy with me! I am so glad that this new plan is working! Thank you Gwen for helping me!!!
Noah has developed a congested cough over the past couple weeks. The vest treatments are helping though. I have even tried deep suctioning him and that has helped a little too. Yesterday, I had Aaron help me with suctioning and my little nephew came in the room to watch. After the first pass, Jonas (he is 2 and 1/2 years old) looks at us with a very serious face and said while shaking his head, "I think that is enough, guys" LOL he is so cute! He loves his little cousin and is sometimes protective of him. Such a sweet heart. But his expression and the way he said it was so funny!
Aaron and I are in the waiting process for our apartment. Every once in a while, I start day dreaming about living in our own place. I picture Noah's room and how I want to arrange his furniture. I can't wait!

update from home

2011-03-09T19:18:00.002-06:00

Noah has been home for 2 weeks already! He is doing great and starting to get back to all his normal, silly, mischief making activities. We are still dealing with him vomiting more than usual, but they are not concerned unless he is loosing wight. He is still gaining which is great! We are just going to have to deal with the vomiting for a while.
His speech is coming back... he now says 'mom mom' all day and recently has started saying babababa again. Today was even the first time since before his surgery that he has eaten anything by mouth. It came out of the blue, too. He saw me eating a peanut butter sandwich and seemed really interested so I put it up to his mouth and he actually tasted it! Then for dinner we were having fettuccine alfredo and I mashed up some noodles and added a little more cream cheese and he LOVED it! I am so proud of him! I was really worried it would take a very long time to get him to take ANYTHING by mouth. Praise God for taking away my worries!
Noah is now getting his PT and Speech therapy once a week as well as his home care nursing. So far he is doing great with them.

HAPPY DANCE!!!!

2011-02-24T09:52:00.001-06:00

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

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

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

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

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

Thank you all for your continued prayers. Please continue to pray for Noah, as he still has some recovery and rehab to go through. Prayers to keep us at home and healthy! And even though we ARE home, I will still update his blog once a week to keep you updated on his progress and how happy his life is :)

2011-02-22T21:26:00.002-06:00

Last night was extremely difficult. Noah spiked a fever that would not come down with the Tylenol or Motrin. He was becoming dehydrated due to his vomiting. Last night they tried 4 times for an IV. At first they got a vein so they drew cultures off of it before they secured it. But before they could flush and secure it, the vein blew. We had him on Pedialyte all night in hopes to keep him hydrated, but that didn't seem to work... vomited ALL NIGHT LONG. He was so miserable. Couldn't sleep at all. Cried all night. Wanted me near but then pushed me away. I tried to hold him in the rocking chair as this has ALWAYS been the cure all, but he didn't even find THAT soothing. I cried with him. It hurts that I couldn't find the right thing to do to help him feel better. Then FINALLY at 5am his vomiting stopped. At 6am he started asking for water and by 7am, was finally sleeping. What a rough night.

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

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

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

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

2011-02-14T21:51:00.002-06:00

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

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

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

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

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

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

2011-02-11T13:36:00.002-06:00

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

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

Feeling kinda crumby...

2011-02-05T12:41:00.002-06:00

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

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

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

We are at the end of January already!

2011-01-30T21:26:00.002-06:00

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

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

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

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

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

2011-01-24T20:38:00.002-06:00

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

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

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

2011-01-21T20:17:00.002-06:00

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

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

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

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

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

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

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

Time for an update

2011-01-18T21:56:00.004-06:00

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

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

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

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

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

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

Enjoy this video of my sweet boy!!!

Quite a few changes....

2011-01-11T21:59:00.002-06:00

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

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

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

2 steps forward, 1 step back

2011-01-09T19:32:00.002-06:00

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

So far, so good!!!!!

2011-01-07T22:17:00.003-06:00

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

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

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

Big plans....

2011-01-05T10:12:00.002-06:00

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

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

Thank you

I wanna say, "I told you so!"

2011-01-02T11:06:00.002-06:00

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

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

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

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

2010-12-31T13:19:00.003-06:00

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!

2010-12-30T18:50:00.003-06:00

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.

Not today...

2010-12-28T12:50:00.003-06:00

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.

Big plans for tomorrow

2010-12-27T11:43:00.003-06:00

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!

2010-12-23T10:54:00.003-06:00

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.

BUT.......

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 :)

4 days post-op...

2010-12-21T17:47:00.002-06:00

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.

2010-12-19T14:12:00.002-06:00

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!

Almost 24 hours post-op!

2010-12-18T16:16:00.003-06:00

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!

Sugery updates!!!!

2010-12-17T08:34:00.011-06:00

******** 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.

Surgery plans...

2010-12-15T11:47:00.003-06:00

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!!

2010-12-13T12:16:00.003-06:00

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.

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

2010-12-10T15:58:00.002-06:00

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

Nervous anticipation for tomorrow morning...

2010-12-09T21:06:00.002-06:00

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!

Noah likes to be a mystery :/

2010-12-08T18:31:00.002-06:00

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!

2010-12-07T18:54:00.002-06:00

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!!! :)

2010-12-06T16:21:00.002-06:00

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!!!

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

2010-12-03T12:48:00.002-06:00

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!

Results from the ECHO

2010-12-01T20:38:00.002-06:00

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!!

Things look promising...

2010-11-30T14:12:00.002-06:00

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.

Round 1....

2010-11-29T22:20:00.003-06:00

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.

Things are speeding up a little...

2010-11-28T10:48:00.002-06:00

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!!!!!

2010-11-27T20:58:00.002-06:00

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!!!!!!!!!

2010-11-24T15:14:00.002-06:00

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!!!

Rough seas ahead...

2010-11-23T22:27:00.002-06:00

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.

2010-11-23T10:22:00.002-06:00

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

2010-11-21T21:46:00.002-06:00

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!

2010-11-20T11:29:00.003-06:00

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

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

2010-11-18T22:32:00.002-06:00

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!

2010-11-16T11:13:00.003-06:00

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.

2010-11-15T11:52:00.002-06:00

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

The Silver Lining....

2010-11-14T10:29:00.004-06:00

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!!!

2010-11-13T10:05:00.002-06:00

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.

2010-11-11T12:59:00.003-06:00

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.

2010-11-09T10:49:00.002-06:00

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.
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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.
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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.
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They have decided to do an echo before they open his chest. Still going smoothly.
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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!!!!!!!
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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!!
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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............

2010-11-08T17:50:00.002-06:00

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! :)

For those who have been asking.....

2010-11-07T23:34:00.001-06:00

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 :)

2010-11-07T21:33:00.002-06:00

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.

2010-11-07T10:25:00.002-06:00

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!!

2010-11-06T12:33:00.002-05:00

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.

2010-11-05T22:59:00.002-05:00

URGENT!!!!!!!!! NOAH IS BEING CUT OPEN!!!!!!!!!! WE DON'T KNOW WHAT IS GOING ON. HIS HEARTRATE DROPPED AND BP DROPPED. THEY WERE DOING COMPRESSIONS. PLEASE PRAY!

UPDATE: THEY HAVE CUT HIM OPEN RIGHT THERE IN HIS ROOM. THEY ARE PUTTING HIM ON THE ECMO MACHINE (basically bypass) WE STILL DO NOT WHAT CAUSED HIM TO GO INTO DISSTRESS.

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........

2010-11-05T11:01:00.004-05:00

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

2010-11-05T09:07:00.002-05:00

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! :)

8:15pm CT

2010-11-04T20:23:00.002-05:00

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

2010-11-04T20:00:00.002-05:00

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

2010-11-04T18:38:00.002-05:00

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

2010-11-04T16:43:00.002-05:00

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

2010-11-04T15:46:00.002-05:00

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

2010-11-04T14:45:00.002-05:00

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

2010-11-04T13:41:00.003-05:00

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

2010-11-04T12:46:00.002-05:00

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.

2010-11-04T10:58:00.002-05:00

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.

How is THAT for some shock value?!?!

2010-11-03T17:11:00.003-05:00

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

2010-11-01T16:25:00.003-05:00

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!

Todays update

2010-05-16T11:14:00.001-05:00

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!

The good and the bad.

2010-05-13T23:32:00.000-05:00

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!

Once again... :/

2010-05-11T19:43:00.002-05:00

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!

I could not be happier!!

2010-04-10T15:47:00.003-05:00

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!!!!!!!!!!

It has been a few days...

2010-03-25T16:23:00.002-05:00

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 :)

Laying out the plan

2010-03-19T12:08:00.002-05:00

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!

Getting the ball rolling

2010-03-16T19:59:00.003-05:00

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!!

We Moved!!

2010-03-13T19:04:00.003-06:00

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!

Another day has come and gone

2010-03-10T21:30:00.003-06:00

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!!
http://www.allsportcentral.com/donation/index.cfm?EventID=23232

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

2010-03-09T20:53:00.004-06:00

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!

So much progress to be thankful for!!

2010-03-07T19:22:00.003-06:00

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!

Great day!!

2010-03-03T18:31:00.002-06:00

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!!!

March 1st

2010-03-01T11:32:00.002-06:00

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!

Getting answers is always nice

2010-02-26T11:01:00.003-06:00

This morning, after rounds, we feel as if there is FINALLY a plan(s) underway. The current plan is to start his feeds again and work him up to full feeds. Every four hours they will give him a break from the CPAP and put him on high flow for an hour. The MRI did not show significant heart failure so they will try weening him off the CPAP for now. If he still needs the positive pressure support after 2 to 4 weeks, then they will discuss the next solution... repairing his heart or putting in a trach. I pray that Noah will decide to take the easy route, but I also am praying for God's will and that I will find comfort in God's plan.
Today he is comfortable and HAPPY! He will not stop smiling!! And he warms my heart! I was having a bad day yesterday but all I had to do to feel better was look at the huge smile on my sons face! He is such a ham!
Oh... and he has been extra drooly today so guess what I discovered?? His second tooth is coming in! His first two teeth have shown up in under a week! I will get more pictures when they both come in a little more! :)