Happy Halloween!

I hope you all had a day filled with more treats than tricks! Not only is it Halloween, but it's Thursday evening which means I am on my way to Pittsburgh tomorrow! I am definitely excited, but also sad because I will be leaving Riley for 10 days. Makes me sad, but, I need to be with my boy, too.

Matt's mom and dad came to Pittsburgh today to visit him and Nolan. Matt told me that Nolan had a great today - maybe one of his best. They have continued doing physical therapy, speech therapy, respiratory therapy...he is on very little sedation and only receiving the Heparin through the IV. Oh, and he is off of his oxygen! You are probably wondering...speech therapy? Nolan can't talk? Well, speech therapy is there to make sure that when he is bottle feeding that he is swallowing properly. When they are there is when they give him a bottle and watch him feed. When they are not there, they encourage us to give him a binky so he gets used to sucking again. Just another exercise he hasn't been doing in over a month.

Matt said he was very playful today, interacting with him, playing under the gym and seems more like himself. So, all in all - a great day. It is hard to believe that tomorrow is November. Nolan spent his first October in a hospital. It is just so hard NOT KNOWING how long this will be. I have all of his stuff still out...swing, baby specific items (floor gym, Boppy pillow, Bumbo), bottles, etc. I just wonder...am I ever going to use these items with him here in our home? He could very well be over the age of 1 by the time he is home. Just - hard to believe. And hard because I am missing all of these baby memories with him. It has kind of been on my mind all day. I may have to start rocking Riley to sleep to get my baby fix! :) Anyway, I am so excited to see him and plan on taking advantage rocking him, (hopefully) feeding him, maybe even change his diaper! HA!

I hope everyone has a wonderful weekend. If I do not send an update tomorrow, that is probably because Matt and I went out to a late dinner. I probably won't get into Pittsburgh until 6 ish, spend time with Nolan until he goes to bed, then we will go out somewhere. But, I will probably fit something in before then. At least pictures!

Good night! ONE MORE DAY CLOSER!

#nhos

One Month In

Well, today marks one month since our lives changed forever. It seems like forever ago when we received the news that Nolan would be taken by life flight to Hershey Medical Center. It is so crazy waking up and doing your daily routine not knowing on that day EVERYTHING will change. I sometimes wish I could REALLY wake up and realize that this was all a crazy nightmare.

 

But...I have pinched myself multiple times, waken up mornings only to close my eyes again hoping I would wake up to a baby monitor of Nolan crying...but, this is reality. And with that, what else can we do but LIVE. We have to for, most importantly, Riley. She needs her Mom and Dad and to have fun, play and continuing living a two year old life. She reminds me that I can't crumble - I have to be strong to keep our family moving forward. And we are! Nolan has had an amazing week and I give a lot of credit to his dad. Matt has been such an advocate for him and a positive force for little Nolan. I hope this all continues when I am in Pittsburgh next week!

The doctors are super pleased with Nolan's recent progress. He has been fever free, off all antibiotics, receiving sedation meds orally, doing great during physical therapy and started bottle feeding today! He took in an ounce and held it all in! This is a huge jump for him! Our little man is coming around...it is such a blessing. If all goes well, he will be transferred to the step-down unit by this weekend. I can't believe where we started from and where we are at! It is truly like night and day. I used to take life hour by hour with Nolan...then day by day...now I am not really fearful for his life. Soon he will have his life back. I am so proud of him!

Tonight I had a nice dinner with a great friend of mine (who is also like family to us), Becky Shaner. She brought over some delicious Thai food, which Riley ended up loving also, and we shared some laughs and tears. It was really nice - THANK YOU, BECKY!

Ahhhh! Less than 2 days and I will be back in Pittsburgh. I am looking forward to spending time with Matt and having lots of snuggle time with Nolan. Miss Riley will be going to the Penn State game with my mom and dad...then head to Danville to spend the rest of the weekend with Matt's parents. We are all keeping her busy!

I hope everyone is having a great week! We are officially sliding into the weekend!

ONE MORE DAY CLOSER!

#nhos

Starting To Gain Strength

An early report today! My parents have Riley at the moment, so I thought this to be an opportune time to send today's update.

Nolan's day was good! They are VERY slowly weaning his sedation. I am pretty sure they completely took him off one either last night or the day before, and have a few more to go. Moving slowly has proven to work for him, so they are planning on staying the course. He is also on very little oxygen. He could probably be taken off of that, however being on the sedation and having that little bit of o2 helps while he sleeps. SLOW AND STEADY.

The past few days he has had very little drainage from his second chest drain and the doctors said the X-ray looked great, so they removed the drain. Anything invasive they can pull out is great because it eliminates any chance for infection. Besides his VAD, I am pretty sure the only other line he has is a standard IV line which is running his Heparin...also his feeding tube. So, those are the two left. (Beside the VAD, which is a pretty amazing site. I am pretty sure Matt hasn't even braved to look at it yet.)

Nolan has also started physical therapy to begin regaining his strength. Matt said he did well today. They placed some hanging toys above him to work on his hand/eye coordination and have been sitting him up to gain some core strength. Can you believe this little guy? He just had open heart surgery less than two weeks ago, has two large cannulas coming out of his body from under his rib cage and he is tolerating all this movement. My hero. I hear that his daddy has also start some exercising having ran 8 miles today. You both amaze me.

All in all a great day for Nolan, so I guess that makes it a great day for us. I can't WAIT to have my family all under one roof. You never really know how good you have it until it is taken away from you so fast. I would take waking up every hour with Nolan to have everyone here healthy and safe. I can't wait until we get that day again!

I have had many people come up to me about my updates and what an inspiration Nolan is. I promise when I say this, I knew something was going to be different with him, I just didn't know in what way. I thought since he was a preemie that this was what my instinct was tell me, but I guess not. I am pretty sure he will be inspiring people throughout his entire life - whatever it is he does. Even though this situation really (ready? I am going to say it...) SUCKS, there is a lot of good that has come out of it. I love my family more, I love my friends more and I truly love my life more. It may be sad right now, but at the end of the day, it has changed everything for the better.

I am off to see some of my wonderful girlfriends tonight - and I can't wait. Then maybe snuggle my lil' gal again (sorry Matt!)

ONE MORE DAY CLOSER!

#nhos

Still Going Strong

Another Monday done. It is officially over two weeks that we have been on the transplant list. I am so excited and nervous thinking about Nolan receiving a new heart. I am excited because he will be receiving the Gift of Life and given a second chance. On the other hand, I am nervous because he is doing so well and having this surgery means he will be sedated and intubated once again. And then we just have to cross our fingers and say many prayers that his body accepts the heart and we can begin the healing process. I can't imagine what it will be like to have my entire family under one roof. It is amazing how quickly you can semi-adjust to life. This is definitely not the type of life I want, however knowing Nolan is safe and stable (and with his dad) puts me at some ease. I just PRAY that things keep on course, however I know I need to be prepared for those bumps in the road. As far as the actual transplant process goes, I plan on explaining all of that one day. It is quite the process and one that takes an additional 4 - 6 weeks in the hospital after receiving the heart. Like I said almost a month ago...this is a marathon, not a race. And I am OK with that as long as he comes home and back into our lives!

Nolan had another great day. They are starting to get him up a little more and trying beginning to stimulate him with various age appropriate toys. He doesn't like to sit up much, but I would imagine it would feel weird (or hurt) having two large cannulas coming out from under your rib cage. But, we need to start exercising him and keeping up with what milestones we can. He is continuing his feeds and putting on weight. He has little oxygen and got a drain pulled out from his chest. They are very pleased with his progress and we are still working on removing all sedation. Last night he was pulled completely from one, so we are getting there! I am hoping by the time I get there this weekend he will be starting feeds from a bottle and I can actually hold and feed him! It's been almost one month!

Tonight Riley and I went over to Becca and Aubrey Alexander's house for dinner (joined by Kristen Nau and Ashley Christ). Becca whips up an amazing meal and I was so happy to see their baby girl, Reagan. Riley enjoyed Baby Reagan and the cat. It was so nice to see good friends and have a delicious meal. THANK YOU! Now, against Matt's suggestion, I have Riley sleeping soundly next to me. Sorry Matt! She's my snug bug, what can I say.

I hope everyone had a good Monday and continues to have a great rest of the week. Again, it is so amazing to think that any day now we could receive the phone call that Nolan's heart is on the way. I just can't wait to really HOLD him and squeeze him some day.

OK - I am off to snuggle my little girl. I am so thankful to have her cheer me up every day!

GOOD NIGHT! One more day closer...

#nhos

Quick Sunday Night Update

I just wanted to write a quick update before going to sleep. It was harder than ever to leave Nolan and Matt today. I think because Nolan is less sedated and more himself. I can't wait for Friday to come and hold him all weekend (and have a nice weekend with Matt). Nolan is doing excellent. Because things have changed so quick the past couple days, I truly believe in miracles and am thankful for the brilliant staff at Children's Hospital at Pittsburgh. They saved my son. Without them a piece of our life would be gone and never could be replaced. I can't thank them enough.

I am hoping that the coming weeks while we wait for Nolan's heart is a quiet one. He could very well be out of the CICU and placed into a step-down unit by mid-week. I am excited for him to make this move, however a little sad because I love the nurses in the CICU! This week they will focus on getting all lines removed (except for the VAD) and work on increasing feedings. Hopefully we can move onto bottle feedings by next weekend.

Well, I am going to cut this short for the night and hopefully get some GOOD sleep to start off another great week for our family. It is always nice to be here and see my little girl. She was coloring a picture today in Sunday school and told the teacher that she was going to give it to her baby brother, Nolan. She also asked me to go to the hospital and see Nolan. It makes me feel good in the sense that I know she misses him and she is understanding that he is sick. This is hard on us all - but will bring us closer in the end!

To end, I can't explain enough how wonderful it is to see my baby boy be more like himself! Holding him in my arms is better than anything in the world. We are so fortunate to have a chance to give him the life he deserves. I know that he has made Matt, Riley and I better people. I will thank him for that forever.

OK - BED TIME! Hope everyone had a great weekend and here's to good week!

#nhos

Steady Saturday

Nolan started out his morning getting to spend some time with his dad. He had another good night and currently only has one main line running Heparin (anticoagulation). THAT IS IT! He has weaned off of all cardiac medicines and is receiving all of his sedations orally. They are working towards getting rid of all of his lines to reduce the risk of infection. He is looking amazing! He does struggle a bit with weaning off the sedation, but that is to be expected. He did have some minor bleeding due to the Heparin, so he received a blood transfusion this morning.

It is so wonderful to see our son again! He is coherent, plays with his toys, hugs his lovey and is a little whiney, but I think he is sore. They said it could take him two weeks to heal from the open heart surgery. He is such a tough cookie, I am amazed at how well he is doing! I think everyone here is. Now that we are in a more stable time, those scary times come out of the woodwork and doctors are now telling us what a serious situation we were in. I can't express how happy I am that we are here. This hospital is amazing. They are so supportive and caring...and they love our son, which makes me love them all!

My sister made it in to town! It is always great to see Auntie Megan. She has been such a rock for us during this time...I can feel her hugs daily all the way from Chicago. Tonight we are heading to Brookfield to watch the Penn State/Ohio State game (WE ARE!!!!) We were supposed to meet my best friends from Penn State, Alisa and Kelly. But sadly, Alisa decided that this would be a great time to get an appendicitis and have to have an emergency appendectomy today. :) POOR GIRL! So instead, we are walking over to Shadyside Hospital to see her before we go watch the game. Feel better soon, Alisa!

Tomorrow they are hoping to remove Nolan from his oxygen. They were going to do it today, but they had to stitch up an spot where one of his drains was placed because there was a little bit of bleeding. They made the decision to let him relax the rest of the day. He is still getting feedings and is starting to put on weight! I even think he looks a little longer!

That is really all I have to report for today. This morning I went through some mail we have received here and the support and love we get from people - some anonymous - is amazing. It is such a great feeling because we know we aren't alone. Thank you everyone!

Well, I am going to kiss my little boy and head over to take care of my girl, Alisa. I hope everyone is having an amazing weekend...and GO PENN STATE! A win against the Buckeyes would be amazing!!

#nhos

Reunited!

Well, my mom and I made it to Pittsburgh! I am currently sitting in Nolan's room while he is getting cleaned up from a massive poo. It got onto his VAD dressings, so they are now having to do an entire dressing change. When they do that they have to totally scrub and gown up, so this is going to be a QUICK post!

The staff here is amazing. The minute I walked in they said, "Mom, do you want to snuggle Nolan?" and I was like, "Ummm...YEAH!" So here we are...reunited again! He was completely content, but then got nauseated due to the withdraw he is having from sedation. I could hear his stomach churning, so yep...got vomited on, which followed a huge poop. But then he was just as content as could be. I loved EVERY moment of it. He looks amazing! He is off of a few heart medication and they are currently focusing on weaning the sedation. That is where withdraw symptoms start. He's had a lot of nausea (throwing up), but they have helped him with some medications. They say he is doing great and everyone here things he is such a trooper! I am proud of him.:)

Anyway, I will post more tomorrow morning. He had a good day. Just having effects from weaning sedation, which is to be expected. Matt, my mom and I are going to head to dinner and get some good sleep. I can't wait to spend the day with him tomorrow!

#nhos

It's A Boy!

I have to start today's post by congratulating some of our dearest friends, Tom and Rachel Houseknecht, on the birth of their baby boy! Rachel texted me this morning at 5:01 am saying that she was on the way to the hospital. Baby Houseknecht quickly joined his mom and dad, making his grand entrance into the world at 8:31 am, weighing 6 pounds 3 ounces and he is 20 inches long. Sounds like Rachel did AMAZING, only pushing for 15 - 20 minutes. Tom and Rachel...we are beyond happy for you guys and we can not wait to meet that little man. We love you all so much!

 

Nolan must have known that his buddy was coming into town because he too had an amazing day...again! Matt tells me that all the nurses were stopping by so they could actually see Mr. Nolan and his amazing hair. He was smiling and laughing; Matt said that he is pretty sure Nolan has a fan club. He was up almost the entire day and pretty content, with the exception to having chest PT. That is when respiratory will come in and pat his back to make sure that any mucous in his lungs is broken up. I can imagine that does hurt when you just recently had open heart surgery! They are very pleased that he is still doing well off of the vent, and they took an IV out of his head, his arterial line out and his catheter out. So, within the past 24 hours they have removed 5 different lines that was going into his body. This is great because that means less risk for infection!

 

They are still slowly weaning sedation, along with some cardiac medications and his VAD is working wonderfully. Because he is on so many medications they proactively make sure to keep an eye on his kidneys. They did an ultrasound of them today and they look good and seem to be functioning well. He is receiving full feedings through his feeding tube - and Matt did not want to leave out the fact that they had a full out code BROWN today (AKA...he had a big poo). You know...Dad's are proud of that kind of stuff. :)

 

So, thank you God - we had another happy day. It feels amazing! Tomorrow when I run into the CICU I am actually going to see my little man's face! I can't wait to see smiles and even hear him CRY (I know - crazy lady over here!) My world just seems brighter and I feel confident that we are going to get through this. He is truly an amazing human being...it blows my mind. I know he will never understand the amount of inspiration he has given me, but I will always be thankful and I am so glad he is in our life.

 

Tonight I spent the evening with my friends/co-workers working (and having fun!) at our annual Spirit of Women Girls' Night Out. It was a great night at the Holiday Inn with delicious food, drinks, amazing presenters and vendors. Always an exciting night. (Local ladies in the Williamsport area - become members! Shameless plug for the night.) Riley spent the evening with my mom and dad. They went to Hoopla's to play some games and had dinner at Longshot's Grill. I was excited because I got home and my little lady was still up - so I got to snuggle her a little and put her to bed.

 

Last but not least, today Nolan was represented on the Children's Cardiomyopathy Foundation's Facebook page. Thank you to Carrie Springman for reaching out to them and connecting me with the Foundation. It is an amazing organization that I am so glad I have become a part of.

 

I hope everyone had a great Thursday! I need to get some sleep so I am ready for the weekend! Looking forward to seeing my Matt and my boy (and my sister!)

 

#nhos

Feeling Human Again

You know when you wake up and you know it's going to be a good day? That was how I felt this morning. First off, I slept from 11 pm until 6:30 am...straight through, without waking up. I actually felt like I could think straight today. My work life is getting straighten back out, my house is as together as it can be for the moment and, most importantly, Mr. Nolan had a great night. I spoke with Matt early this morning and the nurses told him that he did a breathing trial during the night and he did great!

After rounds they decided that if a morning breathing trial went well they were going to move forward with removing the breathing tube. Well, things continued to do well so they moved forward with the tube removal and he was successful! They watched him closely through the rest of the day, and as each hour passed, he proved that he was strong enough to breath on his own. He does have a nasal cannula providing o2, which they have already weaned from 7 to 5. They will continue to decrease the pressure as the next few days pass.

Not only was the vent removed, but his draining tube from his chest was also removed since no fluid has drained for the past 2 days. Having two different items removed from his body just lessens his chances for any infections, so this is all great news!

They continue to change his sedation as they shift away from the Precedex. To help with some of his agitation they have been using Benedryl, and this has shown to have made a big difference. I believe tomorrow they are going to adjust his feeding tube. I will hear more about that in the morning. In the pictures I have included you can see a white object in his mouth. This is actually his feeding tube that he has managed to push forward with his tongue. Little stinker.

Today has probably been one of our best days since September 30. Progress feels so great! I just have to remember that there are still bumps ahead, but I just know we can't give up. He is amazingly strong and motivates me to stay strong. If he can get through this past month, we all can get through anything.

To end the good day, Riley and I spent the evening seeing some of my amazing friends. It was nice to see their faces and finally hug them! Better yet, in less than two days I get to see Matt and my baby boy (and Aunt Megan!) As bad of a situation we are in, I do feel like a lucky person to have a great husband, a beautiful daughter, strong son, supportive family and amazing friends!

ONE DAY CLOSER TO MEETING NOLAN'S NEW HEART!

Keep those prayers coming!

#nhos

A Hopeful Day

I am definitely not one who has ever had problems sleeping, but last night was worse than Sunday. Hopefully a little Tylenol PM will help me stay comfortably asleep tonight. I really need it both mentally and physically!

 

Update from Steel City:

 

Matt said Nolan was showing signs of overall improvement today. He was presenting a slight fever over the past few days, however his temperature has since lowered. Also, the weaning of sedation is going slowly, but smoothly. He is still on the vent, however only at 10 breathes a minute when yesterday I believe he was at 20. They decided to keep his intubated because late last night he showed mild fluid build up in the right lung again. They think it was because his draining tube was clogged. This morning they started a medicine that helped clear the blockage. After an X-ray that was taken this evening it showed that his lung looked much better and the tube was doing its job! SO, if he does well over the night and tomorrow morning's X-ray looks good, he should be good to extubate!

 

The doctors, nurses and Matt all think he looks better than he has in the previous days. He is pretty coherent and Matt says he interacts with him with little agitation. All of this proves favorable that the weaning process of sedation is going well and extubation should be seamless. They do think he still has a small bleed from the VAD placement. This is probably because of the Heparin, which acts as an anticoagulation medication for the pump. So, just another adjustment to certain medications. All of this is like putting a complex puzzle together!

 

Tonight I had another night at home hanging with Riley and mostly trying to get organized. I have so much to go through, fall clothes to get out (both myself and organize Riley's) and get a bunch of items together before the weekend. My sister is flying into Pittsburgh on Saturday and my mom and I will drive out Friday. I will be in Muncy again next week.

 

I am hoping to have a good rest of the week. These first two days have been pretty tough. More of a reality check than anything. I think the worst part of the day is driving home from work because I just pray I pull into my driveway and back into my normal life. I am ready for Nolan to make a BIG improvement (like - getting that breathing tube pulled!) However, I want them to take their time and do things right, of course!

 

Hoping to bring you all some good middle-of-the-week news! Looking forward to seeing some of my wonderful friends tomorrow night! :)

 

ONE MORE DAY CLOSER TO MEETING NOLAN'S NEW HEART.

 

Have a good night and a great day!

 

#nhos

Must Be a Monday

Well, I made it through my first day back at work since our life took a major turn. I have to admit it was nice to be there and in a normal setting. My co-workers always find a way to make me laugh and are good to talk to about what's going on. It kind of set in that this is really happening while explaining it to my friends at work. I think I said a million times...this is just not real life! Driving home from work today I thought about how amazing it would be to get back to our house and see our Nolan in Colleen's arms and Riley playing in her sandbox. BUT, here we are. I think what is so hard is the not knowing what next week will be like...or the next 3 - 4 months. I do not do well with not having a "plan." I am definitely learning how to "go with the flow."

So, an update from Matt today. He said that Nolan had a good day. He still has his breathing tube but it is basically set to a point where Nolan is breathing over it. The respiratory therapist said there's a 50/50 chance he will come off tomorrow. The breathing trials are showing he is having better tolerance, but not 100%. They don't want to take a chance on him failing and having to re-intubate.

Currently, they are focusing on changing/weaning his sedation. He didn't do very well last time he was weaned off of sedation. The took him off of Precedex today. Matt says he actually saw him awake and not irritable tonight, so that is good to hear. The weaning process should take about 48 hours for each medicine. By the end of it he should also be off of his vent. The sedatives can also make coming off the vent either hard or easy. So, they are just being very precautious about everything.

The VAD is working well. It is showing no signs of sediments (clots) and is filling properly. SO, that is all good! I guess we are on our way. Matt and the nurses (and doctors) were very pleased with how he looked today, how he did during his breathing trials and weaning the sedation. Let's hope this trend continues!

Riley and I had a good night. I am exhausted, but focused my night on trying to get our house back together. It's been out of control since Nolan has been born! This has definitely been the most challenging six months of our lives. People wonder how we keep it together. Honestly, what else are you supposed to do? I could sit here and cry, asking the why's in life...trying to find someone to blame. But, nothing is going to change the situation we are in now. I can say that Matt and I are a great team in all of this. We definitely keep each other level and pick each other up when we are down. And Riley - she just brings joy to our lives and we have to continue to be strong for her. If we let down our guard what good are we to either of our kids? And of course, we have our family and amazing friends. I know I couldn't get through this without all of you.

On to another day! Like I said before, it is just a day closer to Nolan receiving his new heart and a new chance at life. We are grateful that we have made it this far.

Hope everyone had a great Monday and continue to have a wonderful week. Can't believe November is so close!

#nhos

Another Weekend Gone

Sorry I did not post yesterday. I was hoping that I could have announced that Nolan's breathing tube was removed, but it ended up not happening. They did two breathing exercises and he ended up not doing horrible, but he just wasn't 100% ready. So, they told Matt and I that they were going to keep him comfortable over night, continue his antibiotic for the infection in his lungs and try again in the morning.

This morning they took a chest X-ray and it looked as though he had developed some fluid around his right lung. Because of this fluid, it was making it hard for him to breath on his own, which was why he wasn't doing well during the breathing exercises. So, in order to remove this fluid they had to do a small procedure where they placed a tube into his lung so it could drain. It was a pretty simple procedure and they did it right in his room.

After that was done, my mom, dad and I said our good-bye's to Mr. Nolan and headed back east to Muncy. It was very weird driving into Muncy today. I just feel very incomplete. It is like my house is completely empty (and messy...ha!) BUT, I have my baby girl to the right of me - sleeping soundly on the couch. I am so thankful for her.

I spoke to Matt. He watched the Steelers with Nolan tonight (BIG WIN!) and said that Nolan was doing much better after the fluid removal. Tomorrow they will try again to wean the vent...and let's REALLY HOPE that it is a success and I can send you all a picture of our little champion! I am looking forward to sleeping in my bed tonight - first time since September 30.

Thank you all for the continued prayers and support. I want you all to know that Matt and I (and our entire family) are so appreciative for everything!

More to come tomorrow. Matt will be keeping me up-to-date so I can keep you all up-to-date! Back to work tomorrow...looking forward to seeing my co-workers :)

#nhos

Day Five Friday

Well, almost going into our third week here at Children's Hospital. Hard to believe. Everything has happened so fast. Three and a half weeks ago I thought we had a healthy baby boy and now here he is waiting for a heart. As all of this has been a whirlwind, it also seems like an eternity since I have been home. That will change for me soon. Matt, my dad and Riley are on their way to Pittsburgh to spend the weekend here. On Sunday my mom, myself, Riley and my dad will be heading back east to Muncy leaving Matt here to watch after Mr. Nolan. I am so scared to leave, but I also want to have my time with Riley and make sure to keep her life semi normal through all of this. I look forward to seeing some friends and my co-workers, but I am also nervous! This is my life - 50 emotions going all at once.

I am SO excited to see my baby girl today...who is definitely not a baby anymore, but she will always be in my eyes. Of course I am excited to see my wonderful husband, and of course my dad. Matt's mom and dad may also be making a trip over during the day Saturday. We are so lucky to have a great family that is here to support us. I am so thankful my mom was here this week because it has been pretty crazy. I am hoping after this weekend we will start to see improvement for Nolan.

With that said, I am sure you are wondering what is up with the little guy. Well, things are still looking steady since his surgery yesterday. He is actually looking MUCH better. His average heart rate is the best I have ever seen; so does his blood pressure and his o2 currently sits around 98 - 100%. He is currently still on the vent. They have slowly started the weaning process, but have still been pulling some thick secretion from his lungs. They decided to culture it again and found that he does have an infection. They started him on an antibiotic this morning and tomorrow we will HOPEFULLY get that breathing tube pulled. They think he would do OK if they removed it today, however, they don't want to push anything and want him 100% ready so they know it will be successful.

I am going to head back and see how my little man is and wait for the rest of the family to get here. I hope everyone has a great weekend! I will touch base tomorrow...hopefully with the news that the breathing tube is OUT!

One day closer to meeting Nolan's new heart.

#nhos
https://www.facebook.com/nolanheartofsteel

Second Open Heart Surgery Success

A breath of relief! Nolan's second surgery went well. They cleared off the fluid from around his heart and checked the heart's positioning. They said the fluid (basically blood clots) were actually older looking, so they do not think there's any new bleeding going on. He actually looks MUCH better. His o2 is at a steady 99 - 100%, BP looks great and his heart rate is in the upper 90s, which is perfect. The VAD seems to be filling up better...so let's PRAY we are on route to some positive progress!

I am pretty sure they will not remove his breathing tube today, but I know that they begin lowering the o2 so he starts working more on his own. HOPEULLY...for real...by tomorrow morning they get to pull this tube and we can start the weekend off on a good note! Once that tube is pulled that means we can start feedings, he will be awake and they will begin weaning him off of certain medications. BABY STEPS THOUGH...

I received the official letter from Children's Hospital of Pittsburgh that Nolan is a candidate to receive a new heart as of October 14. Believe it or not, there's one more little guy down the hall that just received his letter, too. So, lots of prayers to all these families in the CICU. Nolan is listed as 1A, which means his is critical and on a high priority. This will be a whole other emotional path the day we are told his new heart is on the way. It is just crazy to think that it could be ANY day now...(it could also be MONTHS from now).

Aside from the surgery, one doctor told us that his lung X-ray looks good. So we think respiratory wise the nitric oxide is helping and extubation should go pretty smoothly. Oh my gosh, I can't tell you how excited we are to see our little man again.

I am exhausted - I didn't fall asleep until 2:30 am last night and was up a lot through my short sleep. We woke up at 6:30 am so we could see Nolan off to surgery. I just hope I can sleep tonight. Things here should be pretty low-key for the rest of the evening (we hope!), so I will be back to update everyone tomorrow after we round with the doctor's. Thank you all for your prayers!!

#nhos

Quick Morning Update

I just wanted to send out a quick morning update. So, our morning hasn't started as anticipated. Nolan has developed fluid around his heart that they are going to remove this morning. That means they will have to take him back to the operating room and open up his chest again; probably not entirely, just enough so they can drain off the fluid. It does seem to be causing his blood pressure to be on the lower side and he is having some difficulty weaning off the vent.

That will really be the focus today. They say that after the procedure they will continue the weaning process towards extubation, but honestly, I am pretty sure having your chest re-opened and then seeing how he responds to the fluid removal will be what our day consists of. I am continually reminding myself that this is a marathon - not a sprint. We really thought we would get the Berlin Heart and things would be back to the way he was (or even perhaps better!) Well, we will get there, eventually.

With that said, I wanted to send out this quick notice so everyone keeps Nolan in your thoughts and prayers during the day. With him being in critical condition, any surgery is risky. So extra prayers today are greatly appreciated. :)

I hope to bring good news later this evening!

Day Three - Rainy Wednesday

Good evening.

Sorry for the late post. I kind of had a down day today - but, I am feeling a little better. Nolan had a steady day. We really had no changes. He was supposed to get his feeding tube in at 1 pm and it didn't actually happen until 4 pm. They did not want to remove the breathing tube before placing the feeding tube through his nose, so when they didn't get him in until 4, I knew they weren't going to remove the tube. They like to do this during the day when they are fully staffed because they need a team of people in here to make sure everything goes smoothly.

Some new things. Nolan is currently on nitric oxide in combination with his oxygen. Nitric oxide (not to be confused with nitrous oxide) is used in critical care to promote capillary and pulmonary dilation - basically it helps open up his lungs to assist in weaning off the vent. So, plan is to get him off of the vent tomorrow. They are already starting the weaning, but the actual removal will take place tomorrow. I think I will feel a lot better when this happens because they will wean the sedation and I will actually be able to interact with him again.

He is currently receiving blood because his hemoglobin and hematocrit (H&H) levels are down. They discussed this morning that this is probably happening because they take so much blood from him during the day for tests and due to some blood loss from his surgery. So, now they have a specific protocol for Nolan and they are going to try and decrease draws. I did notice today that he was looking paler, and the doctor just told me that he will look nice and pink by tomorrow morning. (PS: Become a blood donor!!)

After the breathing tube is removed, they will begin feedings through his tube to start getting his GI system back in the game. Soon we may be able to bottle feed. I can't wait to hold my little man! I know he won't forget myself or Matt, but it is really hard being disconnected from him for over 2 1/2 weeks. I just can't wait for him to look at me and smile.

OH, CORRECTION FROM YESTERDAY - I explained something wrong in yesterday's post. I said that Nolan was getting a dose of surfactin. That is wrong. Nolan received two doses of pulmonary surfactant, which increases pulmonary compliance. We all naturally are born with pulmonary surfactant. Many preemie babies are born without it if Mom is unable to receive the steroid shot to help lung development before birth. Because Nolan was on the heart/lung bypass machine (and he was a preemie), this may have washed away his pulmonary surfactant - which is why they are replacing it. (Hope that all makes sense! I had to have my mom detail it for me. And, we are Googling...)

I think I covered everything from today. One last thing in regards to fundraising efforts. We appreciate everyone's outreach and willingness to help Nolan and our family. I am researching how to do this properly and am placing a phone call tomorrow to an association tomorrow. Alisa Zisman (one of my best friends from college who lives about a mile from Children's Hospital) is going to help me collect any donations/funds that have been raised. So, once we get this organized I will provide information on how to donate and Alisa's contact information. THANK YOU, THANK YOU, THANK YOU a million times over for being so kind and generous. Honestly, we have amazing friends and family. AND the kindness of complete strangers...it is all overwhelming and appreciated. I am learning how to RECEIVE things...I am not used to it as I love to give, give, give. But, really, we are so thankful for everything.

OK - Nolan is getting yet another X-ray. Once it's done I am going to kiss him good night and put myself to bed. Looking forward to a GREAT day tomorrow.

Good night!

Day Two Tuesday

Good afternoon! Day two waiting for Nolan's heart...

An early post today. Nolan had a fairly quiet night and steady day. My mom and I did our morning routine of waking up and getting to Nolan's room by 7 am so we can be here to listen in on the rounds. Then we went for a long walk - it was a nice morning.

So, here is what was on Nolan's agenda today. He still has the breathing tube. His o2 levels look better today, however they do not feel comfortable pulling the tube yet because he is not really working very hard over the vent. They are also pulling a pretty "creamy" secretion from his lungs, which they are not sure if it is from the rhinovirus that he has popped positive for or (hopefully not) some infection. Whatever the case may be, they gave him a dose of Surfractin which is a very powerful surfactant commonly used as an antibiotic. This should help clear his lungs, and in doing so, they will begin to lower the vent allowing for him to start doing more breathing on his own until they feel he is ready to have the tube pulled. They are hoping to have the tube pulled tomorrow.

Today he had an IV line pulled from his neck - he seriously has a PICC line (peripherally inserted central catheter) or an IV placed on every extremity of his body. I will list it for you starting from the bottom to the top. Pulse oximeter on his left toe, blood pressure cuff on his right leg, catheter in his...you know what, temperature probe (YIKES!), a VAD device coming out of his lower rib cage, PICC line in his right arm, IV in the left arm and an IV in his head. OH - and a tube down his throat and a nutrient line down his nose. Seriously, this little man is a champion. Anyway, one line removed! Hopefully a few more by the end of the day tomorrow.

What else today? So, because his heart was so dilated on the left side, the right side of his heart is a little compromised because it was being pushed for so long. With that said, his VAD is not filling as full as they like, so they have started him on some heparin to make sure that the blood will not clot and will give him more fluids. They are not concerned that there's any damage to the right side, they just are watching closely and expect it to resolve itself. I have provided a picture of Nolan's awesome Super Man socks (thank you Shaner's, Daugherty family!!) and the pump that is the important piece to the Berlin Heart. This is Nolan's left side of his heart right now. Pretty amazing. So, he will remain with that until his new heart comes. I would show you how the tubes go up into the lower part of the rib cage and internally is connected to his heart, but once things heal a little and Nolan is awake, I will provide that image. It is truly amazing the technology they have these days to help save people's lives.

So, today is a pretty good day. They will probably get a feeding tube placed later today or tomorrow morning so we can begin feedings. And I am hoping tomorrow we can wake our little man up and show those eyes to us all. FIRST, taking out that tube. He is not a fan. This also means they will begin to wean him from sedation - which is always interesting with him since he had pretty bad withdraw last time. :)

I have been reading more about cardiomyopathy and running into other people who have had family or friends that have experienced this disease. One family is actually from our area in Williamsport, PA. I wanted to share baby Ellie's story with you all. You can view her family's foundation page by going to http://elliesheartfoundation.org/. I look forward to connecting with baby Ellie's mom sometime soon. Their story sounds very familiar to ours, unfortunately baby Ellie passed away April 25, 2012. It saddens me so because this rare disease comes on with obvious no warning. And every day is a different story as far as the progress of this disease goes. We started out this journey thinking it was myocarditis, to maybe cardiomyopathy...to yes it is cardiomyopathy and how long has he had it or how did he get it...it seriously is like a House episode. Anyway, I do plan on supporting the cause and advocating for further research on this horrible disease. I would NEVER EVER want anyone to go through it. EVER. Thank you to Ellie's mom for reaching out to me! :)

Because Nolan has already had open heart surgery, they did do a biopsy of Nolan's heart. This MAY be able to tell us the root cause. For more information about children's cardiomyopathy, check out the Children's Cardiomyopathy Foundation's website, http://www.childrenscardiomyopathy.org/.

I have babbled a lot today. Sorry! Tonight I think my mom and I plan on going out for a nice Italian dinner. It is nice to get out of the hospital setting and into the real world.

Hope everyone is having a great day! Continue to send us those prayers :)

Love,
Cori

Listing Day

Sorry for the late post!

Today was actually a good day. It was the first day that I have felt good and positive. This is the best that I have felt since this all started. It began after getting to Nolan's room at 7 am and hearing that he had a good night and his recovery from the VAD placement surgery was progressing nicely. He also just looked better, MUCH more comfortable, low heart rate (good thing!) and the VAD was pumping well. Now that he is on the VAD, his heart doesn't look dilated as it did before, so they had to make sure that there was no damage to the right side of the heart. They did an echocardiogram and EKG, and everything seems to be settling well.

The VAD device is a pump that sits right below his chest. There are valves and it acts as the left side of his heart. There is a large box and computer that sits at the end of Nolan's hospital crib and this is how the device is pumped and adjustments can be made. Hopefully by tomorrow he will get his breathing tube out and slowly taken off of any sedation. They will place back in a feeding tube to slowly start feeding again. In about a week or two we will be moved from the CICU to a regular hospital room. That is where we will wait for Nolan's new heart.

That being said - today marks day one. Nolan officially was listed as a candidate for a new heart. This will be a whirlwind of emotions when the day comes. All of this still seems so unreal to me, but I have come to terms with it. This is how we move forward in order to have our beautiful boy in our life. It has opened my eyes to where my philanthropic efforts will go towards in the future and fighting for further research on children's heart disease, specifically dilated cardiomyopathy. We have agreed to have Nolan's heart to be used for research and for him to be followed for other research. Whatever we can do to further education on the how's and why's to cardiomyopathy, we are willing to help. (MORE ON THAT IN THE FUTURE!)

So - good day because Nolan was good, we were officially listed and last, but not least, Fred and Janice Springman spent the day with us. We visited for awhile with Nolan and then went out to lunch. It was so nice to see them (they are like my second parents) and I am sure it was good for them to see Mr. Nolan.

We hope to continue to have these good days leading to the day Nolan receives his heart. This whole experience, albeit a terrifying one, has really opened our eyes. I am beyond grateful for all the support everyone wants to provide. I do plan on starting something on Nolan's behalf to support research towards cardiomyopathy and pediatric heart disease, I just need to do some research. I know that many want to help us out financially, and we appreciate it so much! It is honestly hard to tell what will be covered by our insurance and what will not. We are just in the beginning. The kindness of others is really overwhelming - we have even had some anonymous help...and there is nothing much more to say than THANK YOU. Matt and I feel so blessed that we have so many people fighting for us. We love you all.

Please continue to send us all the love and prayers - I know I pray and thank each of you every night. Just look at the wonderful picture I captured tonight out of Nolan's window. I know we have some wonderful angels watching over us here in the Steel City.

Sunday, Surgery Day

Nolan went into surgery this morning at 8:45 am. The surgery took about 4 hours. It was a successful surgery and now Nolan has a Berlin Heart that sits right below his chest. This was an open heart surgery where they actually had to stop his heart to place it on a bypass machine while the surgery was completed. Now the Berlin Heart beats for the left side of his heart. The next 24 hours will be a critical time for him where he will be closely watched. I will place pictures of the Berlin Heart sometime in the near future when his incision area is a little healed and when his breathing tube has been removed.

So, it was quite a site to see Nolan after surgery. While we are relived it is over, we also are looking at our son who just had major surgery and has an incision in the middle of his chest. I will be honest in saying that I am kind of at an angry stage of all of this. I am SO thankful for modern technology and the fact that this VAD will save his life until he receives a heart - but, I think it is all hitting me. This is really happening. My son's life is in the hands of the people here at Children's Hospital, and I can do nothing but hope and pray that he will stay safe. It's really a stressful situation...as parents we become so protective of our children. I just wish I could scoop him up and hold him...magically make this all go away. Reality really does suck sometimes. (again - sorry for the anger and negativity)

After the next 24 hours, we will begin to see Nolan do MUCH better. His heart function will be normal, he will be taken off of his breathing tube, we will get to hold him, bottle feed him...snuggle. I can't wait.

Matt left with my dad today and will reunite with Riley. He will be at work this week, then the following week I will be home. We will then rotate weeks...with some weeks me being home more than Matt. My mom is here with me, which I am so thankful for. Tomorrow, Fred and Janice Springman are coming. I can't wait to see Jammie and Grampie.

PLEASE, PLEASE keep the prayers coming the rest of the day and through the night. I am anxious for the evening. I thank you all for the love and support.

Love,
Cori

Sleepy Saturday

Well, nothing really new to report today. We are focusing on keeping Nolan comfortable because he is still very agitated, causing his heart rate to go pretty high. So, I have been sitting by him with Pandora on listing to the Rockabye Baby station (awesome, by the way) and it definitely has Nolan at ease.

Tomorrow is the big day for Nolan in his step towards receiving a new heart. He will get the ventricular assist device (VAD) placed at 9 am. THEN - he will officially be listed on the heart transplant list and our waiting process will begin. After being placed on the VAD you will begin to see Nolan actually looking like his old self! After some recovery time we will actually be taken out of CICU and placed on a standard cardiac floor.

I will go more into the whole transplant process some other time - it is pretty long and drawn out. I am really just expecting us to be here for the next 4-6 months. Matt and I will do the alternating weeks - I may stay home more than him since he has FMLA time. ANYWAY, luckily we both can do a portion of our jobs remotely.

I wanted to focus my post today on some positive stuff! Last night we had a great dinner with Blaine, Matt's little brother. It was nice to get out and have some laughs. It really is important to remove yourself from all of this because it can wear on you. I already think I have aged about...10 years...hahaha. BUT, anything for my little man.

Some other good news...one of my best friends from high school, Kristin (Scullin) Collins had her baby on October 10. Her and her husband, Jon, were blessed with a beautiful baby girl named Brooke Elise Collins. She was 7 pounds 9 ounces and 20.5 inches long. She definitely looks like her mama!

One of my long time friends, Maggie, and her husband, Bryan, adopted a baby girl over a year ago. Katelyn Mary Davis was born on August 30, 2012 and yesterday they finalized the adoption! So along with Baby Kate's birthday, October 11 will also be a very special day for them here on out - their adoption day. Congrats!!

My mom is taking the week off next week and is going to stay with me here. I am glad she will be here to keep my company and hang out with our baby boy. We'll have some good mother/daughter time (wine, bad magazines and shopping).

Tonight we are going to head over to Rob and Alisa Zisman's to watch the Penn State game (WE ARE!); I am looking forward to some good food, a good game and hanging with Baby Enzo.

So, I know Matt and I (and my family) are going through probably one of the worst times in our life, but I don't want to think of this as a negative situation. I would never give up my baby boy for anything in the world. Tomorrow Nolan will receive the VAD and actually feel like a normal baby. Who knows if he ever has had that. So, that is positive. And, now our prayers will be focused on waiting for his new heart.  When we do receive his new heart it will also be a sad day for me because I will know that someone else lost a young child and graciously let a piece of them live on in my son. I will be eternally thankful to those people. Matt and I were talking the other night and we reminded ourselves that there is really so much good going on for many of our friends and family...it truly makes us happy. Nolan is lucky to be surrounded by so many great people and he is going to have an amazing life! Today is Nolan's 6 month birthday - and I am hoping the rest of his life is much more comfortable...starting tomorrow!

OK - enough with that. :) I hope everyone has a great day. GO PENN STATE! I will update tomorrow after Nolan's first big step towards some normalcy. Please keep us in your thoughts and prayers!

Love,
Cori

And Our Journey Continues...

Sorry for such a late post. Matt and I had a very busy day today talking with the transplant team, social services and surgery.

WELL - we have come to the day where some major decisions have been made. After weaning the epinephrine, Nolan's echocardiogram showed that his ejection fractions have gone back to where he was prior to going to Hershey Medical Center. The left side of his heart is barely functioning. When weaning him off of sedatives yesterday, he became very agitated. Basically, he is having withdraw. Having withdraw increases heart rate and expends a lot of energy (sweating, crying, moving). So, they started him on some methadone to ease the weaning and placed him back on the heart medication doubutamine (we had him off). This helps his heart beat more efficiently. He seems to be a little better, but still very agitated. When he gets agitated, his heart rate goes almost to the 220's. This can be very dangerous for Nolan as he could have a stroke.

Because Nolan's heart works so hard to pump blood throughout the body (and he is in need of two different heart medications to do so), his other organs may not be receiving the proper amount of blood to function. This poses a risk to damaging other major organs.

With all this said, Matt and I came to the realization last night that Nolan is failing. They are doing everything they can to sustain him, but the truth of the matter is that his heart is severely damaged. On Sunday morning, Nolan will be receiving a ventricular assist device (aka, Berlin Heart). This is a mechanical pump that's used to support heart function and blood flow in people who have weakened hearts. The device takes blood from a lower chamber of the heart and helps pump it to the body and vital organs, just as a healthy heart would.

Also on Sunday, Nolan will be placed on a list to receive a new heart. The ventricular assist device will actually help Nolan become stronger and healthier so he is ready to go when his new heart comes to him. We have switched our outlook on how can we save Nolan's heart to how can we save Nolan's life. By next week, Nolan will be awake, eating through a bottle, we'll be able to hold him and cuddle...and hopefully in the next 2 - 4 months Nolan will have a new day to celebrate, a new heart.

Honestly, I feel like I am in a Lifetime movie. Like...this isn't my life. This only happens to those other people you read about on Facebook. It is seriously an out of body experience. But, I know with the support of our family and all of you reading this, Nolan is going to do amazing. And after this when we are home, we will live life to the fullest with our family and friends. I want us to do new things, visit new places and live life the way we were meant to. Nolan can still go on in life as normal, play non-contact sports, go to school, go to college...maybe have a family someday...who knows. A heart transplant is not a long term solution, but, it gives him a chance. Who knows where medicine will go in the next 5-10 years.

SO...our journey now is really just starting. We have wonderful support here who have helped us the past 24 hours and the resources they provide to us are great. Matt and I are doing OK. Matt's brother, Blaine, flew into town and we are going to go have a good dinner and some drinks tonight. We have Nolan comfortable and on the morphine to help ease agitation, so he will be sleeping a lot.

Thank you all again for all the love, prayers and support. We will need them more than ever.

Love,
Cori

A Few Steps Forward, A Few Steps Back

I am not really sure where to begin today.

Nolan had another great night last night. However, today has been a different story. It seems as though he is having some withdraws to pulling some of his sedation medication. He had a really agitated period where his heart rate was close to 200. This can be very dangerous for him because the left side of his heart beats very little and his right side compensates for this. With that said, they have him on medication to help wean him off of the sedative, and then was placed back on some heart medication to help with his ejection fraction. He also started some tube feedings today. This may be a cause of his irritability, but our nurse personally feels there may be some belly irritability due to the narcotic he is on to help wean him from the sedation.

So - I guess not every day can be a good day. I do know that tomorrow at rounding they are going to take all of this into account and do some adjusting, keeping in mind if this trend continues we will be looking into becoming true candidates for a heart transplant. Today we met with several members of the heart transplant team. We meet with various players such as the transplant coordinator, the transplant physicians, surgical PAs, infections disease and psychiatry. We are currently doing this to start the process so if we do need to move forward with a heart transplant, Nolan is ready to go.

I have to remember that not every day is going to be a good one. We have really pulled a lot from him the past 24 hours so some steps may need to go a little slower. I pray that tonight and tomorrow go better - and maybe the doctors/nurses will have a better plan. And I have to also come to terms with the fact that Nolan may need a new heart, and if he does...that is OK. We just want to give him a chance at a life he deserves. All the kids here in this CICU deserve that (and anywhere else, for that matter).

On a side note, my Susquehanna Health family had a wonderful service for Nolan this afternoon. They have made a string of hearts with messages of love and hope for Nolan. We are so excited to see it and hang them in his room. I was lucky to be able to Skype in for the service and view for myself. All the love and support is overwhelming. It makes me feel good to know that whatever happens here, I know I have so many to lean on. We really thank you all for that.

Lastly - we received a Amazon gift card, but I have no idea who it came from. If the sender is reading this, please contact me :)

PLEASE keep sending all the love and prayers.

Love,
Cori

Quick Snuggle on a Good Day

Well, we had a good day. Nolan's vital signs have continued to be stable - he did seem to be a bit agitated through the day when he is awake, but this Mama thinks it's because he is hungry! He got a feeding tube placed today so we can begin some feedings to get his stomach and GI system going. Feedings will start REAL small, it is almost like we are starting all over. They will probably start that tomorrow - we hope.

We have him weaned off of one heart medication, epinephrine - so that was also a good step forward today. We have also took him off of forced air and he is on just normal oxygen. Once we have him lowered on milrinone (another heart medication), then we can look towards bottle feedings. If he is successful with the feedings, we will be really on our way.

We still have a long way to go. I can't wait until some days pass and we get further and further away from the heart transplant discussion. Because he could still need one, Matt and I are moving forward this week to meet the transplant team. It is a series of meetings with doctors, nurses, infectious disease, counseling; this is so if we do have to move forward with a transplant, we are ready to go. Let's pray we don't!!

Oh, last thing to wrap this up, I got to hold Nolan today for about five minutes. He was not really having it, but it felt good to have him in my arms again.

Matt and I plan on taking a break tonight and are heading over to our friends house - Rob and Alisa. They are making us dinner and we are going to watch the Buccos. Let's hope for a win, but most importantly, let's pray that Nolan has a good night!

Hope everyone had a nice day,
Cori

Tube Out and a Good Night

Good morning!

For those who have just viewed this blog for the first time, you can view my past posts about Nolan's condition at http://www.carepages.com/carepages/NEMcLaughlin. I am going to continue to update both this blog and the CarePage because my work family at Susquehanna Health can't access this site.

We just got done rounding with the doctors. Nolan has had a good (almost) 24 hours. He got his breathing tube removed around 11 am yesterday. He responded well to it and we all felt good. This was a HUGE step for us. If he would not have successfully supported himself without the breathing tube it would have been pretty much a sure sign that Nolan was in need of a heart transplant.

So, feeling very happy and positive, Matt and I went out to lunch (outside of the hospital). We started discussing who was going to go home first because we plan on alternating weeks here so that one of us is home with Riley and one is here with Nolan. Having made the decision, we called my dad and told him to hit to road, that one of us was coming home. Then, we got a phone call from our nurse that Nolan was not responding well and they were going to have to place the breathing tube back in. Matt and I immediately ran out of the restaurant (we did pay our bill).

Getting here, my prayers were answered on my way back to the hospital - the tube was not in. He had an episode where his breathing was very wheezy and his skin was mottled, kind of representing a cardiac issue. But the doctor said it didn't really make sense because his blood gases were great and his chest X-ray was pretty clear. So, what happened? We really aren't sure, but he did self-correct and has been fine since. SO - we are currently tube-free! I didn't leave his side all night. I couldn't bear to leave him again and get another scary phone call.

On the agenda for today...

Now that he is doing well without the breathing tube and currently is receiving oxygen through a cannula tube in his nose, they are starting to wean and adjust his meds. They have also decreased the amount of oxygen they are supplying to him so he begins to work more on his own. Once some meds are weaned, we will begin bottle feeding. I can tell he is hungry - he is eating his hands. I was even told we may be able to hold him today!

We are hopeful for another good day with little to no scary surprises. We are not out of the woods, by any means, but we are managing, and that is what is important right now. I think the doctors and nurses are pleasantly surprised thus far.

Future plans - as of now ONE of us will be coming home Sunday. I am thinking it will be Matt as he wants to get back to the office and we also are finally getting our garage construction underway (another crazy story I won't even get into).

Thank you ALL for the prayers and strength! They are working - truly. I can feel the love and energy.

To another step forward...
Cori

Welcome to Our Journey

Well, this is my first post to my first blog. Unfortunately it is a blog about my son, Nolan Everett McLaughlin, and his battle with a recent diagnosis of dilated cardiomyopathy and reactive airway disease.

What is dilated cardiomyopathy?

Dilated cardiomyopathy is a disease of the heart muscle, primarily affecting your heart's main pumping chamber (left ventricle). The left ventricle becomes enlarged (dilated) and can't pump blood to your body with as much force as a healthy heart can.

What is reactive airway disease?

Reactive airway disease in children is a general term that doesn't indicate a specific diagnosis. It may be used to describe a history of coughing, wheezing or shortness of breath triggered by infection. These signs and symptoms may or may not be caused by asthma.

So, you are probably wondering, how can these diseases be treated?

Nolan shows signs of pretty severe cardiomyopathy. He very well could have to take medications to help his heart function through life. Our current treatment path goes as followed:

• Wean from ventilator
• Observe off ventilator to adjust any medications
• Begin bottle feedings (feedings for babies act as their exercise, as well as gaining energy)
• Begin removing IV meds and replace with oral meds
• Observe, observe, observe
• Begin to wean meds
• Observe, observe, observe
• Be discharged with any necessary medicines to be taken orally, indefinitely

What if this doesn't work?

If the above treatments do not work and Nolan continues to show signs of no improvement, then he will be a candidate for a heart transplant.

As you probably know, this has been a whirlwind of emotions for Matt, myself, family and friends. We have learned so much in such a short period of time. It has opened my eyes to so much in life. What is really important? My family, my friends, their health. I have learned not to ever give up hope and found faith in my heart. I know no matter how our journey ends here, I have found random kindness of others and the power of giving. Matt and I love our son so much and can only rely on the amazing practice of medicine that the Children's Hospital of Pittsburgh provides and the love and prayers we are receiving from so many. We are truly grateful for each and every person who's rooting for us day in and day out. We can't wait for the day our family gets to reunite and we can watch Nolan and Riley grow together.

I plan on updating this blog daily on Nolan's status. This is going to be a long and hopefully, pretty uneventful journey. :)

Much love to you all,
Cori