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

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!!

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.

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!

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!

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!!!

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!

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. :)

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.

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

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!

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!

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.

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.

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.

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.

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!

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.

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 :)

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!

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!

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!

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Enjoy this video of my sweet boy!!!

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

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

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

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

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

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

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

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

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

Thank you

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

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

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