Holiday Season Is Here

Another Thanksgiving has come and gone. We had a nice family weekend. I missed my post yesterday because Matt, Riley and my dad got into town and our day was filled with visiting Nolan and then we had dinner over at my parents hotel. We ended up getting back to the Ronald McDonald house late.

Nolan is doing OK. He has had a tough couple days. Matt came over to be with him early this morning and said Nolan was inconsolable. We believe it is mostly due to weaning his sedation. Currently Nolan is on three different sedatives; methadone, Ativan and clonidine. The plan that has been going on the past 4 weeks is to wean .1 methadone one day, .1 Ativan the next day and the third day do nothing. Once he is weaned off of the methadone and Ativan, then they work on the clonidine. The clonidine is actually a patch, and the methadone and Ativan are taken orally. Having seen his last melt down, you can see that he is having some withdraw issues. Throwing up, shaky, high heart rate and totally inconsolable. It is hard to watch. But, they went back up on the Ativan and I think we may have to take the weaning process even slower then we are now. The reason they have to wean is so he doesn't build up an immunity to these drugs.

He is on very little feeds and the cultures of his diaper came back negative for any infection. The blood in his stool is probably due to the Heparin, and there's not too much concern. He had an X-ray of his belly again today, which came back fine and he also had a head ultrasound, which looked good as well. Neurologically he looks great. Moving his head left to right, focusing on things, moving his arms and legs...so all of that is good.

We had a really nice weekend with my family. Riley is so amazing, she brightens my day. We had so many laughs with my parents and sister...it's nice to get out a bit and into the world. But, you are never totally at peace. I can't wait for the day where we can feel somewhat relaxed.

I will make sure to post some good pictures tomorrow! Nolan has been so cranky, I didn't have the opportunity to capture any. I hope you all had a great holiday weekend! I guess it is now really time to get into the Christmas spirit!

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/
Buffalo Wild Wings Fundraiser Dec 4

Happy Thanksgiving!

I hope everyone is having an amazing day with your family and friends! My mom made it here before around noon and she was so thrilled to see Nolan. The last time she saw him was in the CICU and he was still pretty sedated and not really himself. She was shocked how much he is back to his old self! It brought us to the realization how far we have come and how thankful we are where we are today! There were many times I didn't ever think I would see that smile again...or hear his voice, and now I get it all day long! I even change his diapers, console him when he is upset...I get to play "mom" to him again! It feels good.

Nolan is having a wonderful day. He is still on TPN and lipids. They are doing a culture of his stool, so we should find out in 3 days or so whether or not he has an infection. He is on preventative antibiotics just in case. If the labs come back negative they will start the feeds again. Everyone is coming in and raving about how great he looks. "just like a healthy baby if the VAD wasn't there!" Thankful, thankful, thankful.

My mom and I went to a Thanksgiving dinner held here at the hospital for heart families by a family whose son recently received a heart transplant. His name is Jameson and he is now 3. I got to talk with Jameson's mom and hear about their experience the day they received the gift of life up to present day. What a wonderful family dedicating their life to CHD awareness and helping heart families during their stay at Children's. I get it because going through this all you want to do is HELP others after. I want to help people here even when I am going through the same thing. I think it's because we all feel so helpless. All of these heart families inspire me and I look forward to giving back when we are in our next chapter of life. Check out "Jameson's Army." http://www.jamesonsarmy.org/ Thank you for the dinner Danielle and Patrik and the board of directors of Jameson's Army!

I wanted to dedicate today's post to a few young entrepreneurs.

First are Brenna and Paige Rosenbaum. Their parents are good friends of ours, Scott and Amy Rosenbaum. We watched Brenna grow up, saw Paige take her first steps and they have given us all their girls clothes for Riley. We share similar experiences because both Brenna and Paige were preemies like Nolan. When the girls heard Nolan was sick, they told their parents they wanted to do something for him. Brenna spent hours making yellow and gold bracelets with a red heart in the middle representing Steel City and Nolan's heart. The girls would sit outside of their house for hours selling bracelets. Scott and Amy didn't even ask them to do anything, they acted on their own.

Last, but certainly not least, Miss Kailee Helmrich. We have season tickets at Penn State and are a part of a large tailgate (THE BEST TAILGATE!) There are a so many wonderful people associated with our tailgate, one being Kailee Helmrich, daughter of Chris and Tiffani Helmrich. Kailee also found a love and connection to Nolan and wanted to do something for him. She taught herself how to make bracelets and before a PSU game she made a bunch of them, blue and white to represent our favorite team, and sold them fellow tailgaters. She spent time to make signs and even write us a very nice letter expressing how much she wants Nolan to get better and live a happy life.

It is so heart-warming to see young kids selflessly do things for others. I don't think they understand the impact it has on me or my family, but it brings tears to my eyes how much they truly care! I think these sort of acts of kindness need to be emulated more amongst young kids, especially with all the bullying you hear about these days. These girls GREATLY helped us and my little boy. More then they will ever know. And we thank them so much, and their amazing families.

WELL, my mom is on the way back from the airport with my sister. We are going to hang with Nolan and then go watch the Steelers game somewhere. I am excited to be with my ladies!

Happy Thanksgiving everyone! I hope you all are stuffed and enjoying the day!

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/
BWW Fundraiser December 4

Heart Shaped Balloons

I have to give a shout out to my parents because today is their 37th anniversary! I have learned so much from them as parents and as a couple. The support each other, and of course their daughters, my husband, my kids, their friends, their parents, their friends family...you get it. I am so THANKFUL to have them in my life! I can't wait to see my mom and sister tomorrow...and then Riley, Matt and my dad Friday.

Nolan had an amazing day. I love that most of my mornings here start out with him waking up, looking at me and smiling. It's the best start to a day! I guess the morning actually started off to a questionable. Our nurse was doing her evaluation of him and he had a poopy diaper. She noticed that the stool looked like is had some red flakes in it (I wouldn't have even noticed), so she decided it would be best that the diaper be sent to the lab. She finished up her evaluation and morning meds...he looked great and no changes were to be made. Because of the blood in the stool they decided to get an X-ray of his stomach. The reading came back pretty quickly and showed nothing wrong, however, the lab results of the diaper did test positive for blood. The CRNP that was on duty suggested to pause feedings for the meantime until pediatric surgery could come up and evaluate Nolan. When they got to the room the team evaluated him, pressed on his belly and thought looked great. SO, for precautionary measures they are going to pause feedings for a week and start him on TPN and lipids. This is just in case there is some stress in the intestines that is causing the bleeding. Because he fully anti-coagulated he has the tendency to bleed more and faster. They absolutely do not want to deter anything that would result in us having to stop anticoagulation because he needs that for the VAD and if a heart were to come. I am all about being as precautious as need be. As long as he is receiving nutrition and the anticoagulants, I am happy.

The remainder of the day was perfect. He did great during OT/speech therapy. He allowed items into his mouth without much of a gag reflex. He knocked one out of the park during physical therapy. He was sitting up supported by the therapist and balanced himself pretty well, all things considered. Then we put him on his belly during tummy time using a Boppy pillow and he actually used his arms to pick up his head and moved it left and right about five times! Everyone was cheering...he was angry and crying, but working hard...it was wonderful. He has really recuperated well from the strokes he had about a month ago. I am so proud of him!

I had another crazy thing happen to me today. I was on the phone with Matt telling him about the feeding issues, and while talking I was gazing out of the window in Nolan's room. His room looks at a building that is connected to the hospital, a lawn and an old cemetery. As I was chatting I saw a shiny ballon the shape of a heart fly from behind the building. I was in the middle of a sentence and told Matt as I saw it. I mean...how strange is that?? A shiny, pink, heart-shaped balloon flying in my sight at the time I was looking out the window. Almost as crazy as the smily face I found on my banana the other day. I love these fun signs.

Oh, last thing. Nolan was lucky to have 4 visitors today! First, Laura Fisk (fellow heart mom) and the other Nolan stopped by to say hello. They were at the hospital for some appointments. It was Laura and Nolan's first time to meet our Nolan. It was really nice, and her Nolan is looking awesome! Then we got a visit from Rob and Alisa Zisman. Alisa brought Nolan fun pictures that spell out his name that we hung up in Nolan's room. It was great to see them all!

Well, I am off to bed. Happy Thanksgiving to you all! I will try to post tomorrow, but if I don't, no worries! My mom will be in around noon, then we are going to a Thanksgiving dinner for all heart families, after that Megan flies in...THEN the Steelers play! I hope everyone has a great day with their family and friends. I know we are not in an ideal situation, but I have so, so, much to be thankful for. Mostly, I am thankful for all the prayers, support and love we get from all our family, friends and complete strangers. You ALL have taught me so much! And I am thankful for a great husband...and two AMAZING children (and a dog that isn't so bad)! :)

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/
BWW Fundraiser on Dec. 4

A Day of Firsts

I was expecting to walk in this morning being told that Nolan had a fussy night because I ended up staying in his room until about midnight. He was so agitated, and I think most of it was teething. They also weaned his methadone towards the end of the day yesterday, albeit just a little bit, I do think it brings on some crankiness. When I got here I was told he pretty much slept through the night only having to receive Tylenol once. I was relieved to hear that, and really his demeanor was very pleasant the rest of the day.

Of course I have to mention the weather. It was snowing pretty much the entire day, then turned to sleet and I hear it is supposed to turn back into snow tonight through the day tomorrow. My mom was supposed to come tomorrow, however I am not a fan of Route 22 in the winter, so we think it would be best she wait until Thursday morning. BUT, I told Nolan that it was snowing out because this marks his first real snow storm! We hung out quite a bit this morning, then he took a good nap until about 10 am. While he was napping, Child Life came in and asked me about my husband requesting Nolan to receive a haircut. I reluctantly agreed to it only because I know Matt really wanted his hair evened out. PERSONALLY, I would have let it go, I haven't even cut Riley's hair yet! BUT, this is Matt's boy, so I will let him make the hair decisions because he is certainly not making Riley's hair decisions!

Around 10 am music therapy came in (which he loves so much) and then the hairdresser, along with another fellow heart mom, Holly Wagner, who helped set up the haircut. I later learned that she lost her son, Benjamin, to Congenital Heart Disease not long ago. When Benjamin passed away they vowed to help CHD families, educate others about the importance of organ donation and raise CHD awareness. Their organization is called Ben's Battle Buddies. I feel bad because I didn't know until a few minutes ago that she was who took time to find a hairdresser to come out and give Nolan his first hair cut. So, THANK YOU, Holly! I appreciate all the help other fellow heart families provide to current heart patients. I hope Nolan's Heart of Steel (soon-to-be) not-for-profit can do the same someday when we get through this.

Anyway, so Nolan's second "first" of the day...his first hair cut! He did pretty well and had a crowed of spectators watching. When people think of Nolan, they think of the HAIR! Now it's all even and he looks like a little gentleman. Really, he looks like his dad...I guess he is a gentleman, too. :) Nolan has a good guy to look up to.

After the haircut, Nolan took another nap for awhile until physical therapy came by. We spent a good amount of time with the physical therapist. He laid on his side, we worked on tracking toys from left to right and he had some tummy time. Worn out, we put him back into his purple chair where he hung out for a good portion of the day. I tried to give him some bananas, but he wanted nothing to do with it...so, I will try again tomorrow.

That was pretty much our day! He is just getting up from another nap and I think I am going to hold him for a little before I go to bed. He had a really nice, comfortable day. Tomorrow he will be getting his echocardiogram and maybe a head ultrasound. We'll also work him in PT and OT tomorrow, too.

THANKSGIVING IS ON ITS WAY! I am very thankful that we made it to where we are today, the progress Nolan has made and for all of you!

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/

Chatter Box

I walked into Nolan's room around 7:45 am this morning, and he woke up with a smile and chatted to me like he had just came back from Disney World. He was bubbly, animated and himself. It is so nice to see because I can remember those times when I promised the nurses in the CICU that this boy really does smile and is a happy little man. Well, it showed today. And it's times like these I don't want to forget that smile or babble because we do have another major surgery in the near future (the heart transplant) where he will be intubated again and we will have to work our way back to these happy days.

Now, he still has some agitation. All the nurses seem to think it's still the teething. No teeth have popped out yet, but I felt and his gums feel swollen and hot! (Not sure if that makes sense, but I compare that to the feeling of radiating pain.) They have given him some doses of Tylenol, which does seem to put him at ease. I think the big items from today are that he got his VAD dressing changed, he had to have a blood transfusion because his H and H levels (hemoglobin and hematocrit) were down and he got a bath! He was pretty angry after his dressing changes, so we skipped PT. I plan to have him up more tomorrow. The reason for the blood transfusion may be due to lab draws.

I still have such paranoia about this waiting period until the heart comes. I am constantly looking at him for any changes, particularly looking for any signs of stroke. They do monitor him closely, but naturally my fear is there. I did have an amazing moment with him today. He was having one of his cranky moments, which is always hard for a parent to watch because you just want to pick them up and hold them. Nolan has ALWAYS been a snuggly little man, so as I was patting my belly I laid my head next to his and was trying to calm him. He started to ease and then we began our staring contest. He was looking right into my eyes, almost studying the features on my face. Then I gave him a little smile, and he gave a little smile back at me. I will never forget it. I told him we'll get through this...you help me, and I will do whatever I can to help you.

Well, it looks like they are calling for snow around here tomorrow into Wednesday. I am so thankful that the Ronald McDonald house is hooked right to the hospital! Such a wonderful convenience! I hope everyone had a good first day of the week. It's a short week for most! I know I am looking forward to seeing my family!

ONE MORE DAY CLOSER!

#nhos
http://teamnolan.weebly.com/
Save the Date

Steelers Sunday

I can't believe Thanksgiving is coming up! Although it is Sunday, and I am usually pretty bummed because that means Matt and I have to separate for the week, I am excited because it's a short week! My mom will be here Wednesday, then my sister on Thursday and finally Matt, Riley and my dad on Friday morning!  Matt and Riley will have Thanksgiving with the McLaughlin family, then the Everetts will be doing our dinner on Friday. My parents stay at a great place in Shadyside called the Shadyside Inn. They are basically apartments that are refinished and modernized. So we are catering our Thanksgiving meal thanks to Whole Foods and having dinner at their place. I am excited!

Nolan is doing great. He has really been moving around so well. They are so happy with how well he is moving the right side, even his head tracks from left to right. SO THANKFUL! His VAD pump looks clean as a whistle, PTT levels therapeutic, almost done weaning his Ativan and he weighs 17 pounds! You would never know that he was a preemie. Besides having the VAD, he looks so healthy. This is exactly where the doctors want him to be...good and healthy for the BIG DAY!

Today marks day 41 that we have been on the transplant list. So, we are getting close. The anticipation is crazy! It's like being a kid again and waiting for Santa to come. I want to make Nolan's heart day a memorable one...a day of celebration, every year! I am sure people have many questions about the aftermath of a heart transplant and I have been trying to think of ways to answer these questions. So, first I can start by giving you an idea of what will happen post transplant until we are discharged.

When the transplant team approaches us to let us know that they found a donor, this means that they did a background check on the donor and they feel that the heart will be a good match for Nolan. A portion of Children's Hospital of Pittsburgh's transplant team will actually fly to where the donor is located to harvest the heart. Once the heart is removed from the donor, that is when the countdown starts. The heart will have to be place in Nolan within a 4 hour period. In the meantime back at Pittsburgh, Nolan will be prepped for surgery. That actual surgery is less risky than when he had his VAD placed. Once the heart arrives, they will remove Nolan's heart and place in the new heart. In the middle of all of that, he will be placed on a bypass machine. After the new heart is in place, they will observe for an hour while beginning the antirejection medications. Once things look steady, they will close him up and he will spend about 1 - 2 weeks in the CICU. From there we will be moved to the step down to floor 8A (where we are now), which is the Acute Cardiac floor. AFTER THAT, we will spend 6 - 8 weeks with Nolan at the Ronald McDonald house. During this time he will have daily appointments, therapy sessions and physicians will teach us how to properly administer his medications. Once they feel we are on a good course, we will officially be discharged. Nolan will come here every 3 months to get a biopsy of his heart to make sure no rejection is occurring. We will also visit a cardiac pediatrician every couple weeks to a month back at home. Once time progresses, these appointments will taper off. By 5 years out he will only have to come to Pittsburgh once a year.

So, we have a long adventure in front of us. I have a warm feeling inside that he is going to do WONDERFUL. He is so healthy besides his heart condition. And he is such a strong boy! Everyone thinks he is going to be a BIG boy. I used to not be able to envision his future. It was scary because I couldn't see him in my dreams. But the other night I had a dream that I was holding him in an upright position - and he was walking! So, it just gives me comfort knowing we are going to get through this and he will get the life he deserves.

OK - I am off to get some dinner and spend some time with my little guy. Hope everyone had a great weekend! Matt and I had a really nice one.

#nhos
http://teamnolan.weebly.com/
http://nolanheartofsteel.blogspot.com/
SAVE THE DATE!

Meeting a New Floor

Well, back in Pittsburgh! Sorry I didn't post last night. For our anniversary back in September I got Matt and I tickets to see Jerry Seinfeld at the Community Arts Center. We had plans to go with our friends and co-workers, Brian and Teia Engel. Since Matt was in Pittsburgh and Thursday nights are typically spent packing for the weekend, I was planning on selling them. After some encouragement from my husband, I decided to go. I took my good friend, Ashley Christ with. So, Brian, Teia, Ash and I had a fun night in Williamsport. It was nice to get out and see people! AND Jerry is pretty funny :)

So, I had a pretty quick work day leaving around 1 pm so I could get here for dinner. Nolan has had a great day. He is cooing and carrying on a conversation with me, it's so fun! Actually, a side I have never seen before because he was not to that stage when this all started. His smiles warm my heart...and his cries are super strong! I think he is in wonderful shape...just anxiously waiting! Maybe a Turkey day heart? I don't like to get my hopes up, but I know that something is going to come along soon.

The 8th floor is so nice. Private room with a bathroom, nice TV, roomy - a lot different then the CICU. I do miss all the staff down there, though. I may have to go down and say hi. And who knows, we may be back soon enough after the transplant!

Other than that, everything is looking great. He got to try bananas today, and I heard he was a fan. Cereal, not so much. PT is so happy with his movement and he is looking to the right just fine. You would never know this child has had 3 or so strokes. Thank God it was nothing more serious.

WELL, I am going to wrap this up so Matt and I can get some dinner and watch a little of the Pens game. Thank you all, again, for the prayers and support! We are lucky to have all of you!

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/

The Smiles Continue

Another late night for me - this seems to be the trend, one that really isn't me! (Usually I love my 9 pm bedtime!)

Well, LOVE to be boring, but Nolan is doing great! He still has occasional periods of agitation, but he is 7 months old, teething and hooked up to a VAD, so I would be cranky, too!

He did get his weekly series of tests done; EKG, echocardiogram and an ultrasound of his head. All tests came back without any changes, so that is great! In fact, his heart looks good. We are in no means out of the running to get a heart transplant, but they feel that he is all around very healthy and READY for this to happen. Because he is so healthy, if a heart were to come that they feel isn't "ideal," meaning maybe the donor had some issues with other organs or it wasn't his blood type, then they would deny it because he is stable and has the time to wait. If it were a "critical" issue, they would take a heart they would take a heart that could have a slight chance of issues. Sadly, these are just risks that come along with all of this.

So, to make this whole transplant situation more confusing, Nolan is able to accept a heart from any blood type. This is because babies do not have a fully developed immune system and have not developed antibodies to reject other blood types. This is called ABO-incompatible transplantation, and is only considered for babies under that age of 1 and is categorized as a 1A on the United Network of Organ Sharing list, which is the most critical. But, all of this is GOOD because it allows Nolan to have more options because his blood type is O+. This was all very interesting to us!

Nevertheless, the transplant team is optimistic that this all will be happening soon. They are so happy with his progress and where we are at from where we started. It is still, by no means, easy - but, I truly am so thankful we made it to this point! I remember a month back longing for the day to see this smiling face. He is beautiful!

Well, off to bed. Almost the weekend! ONE MORE DAY CLOSER!!

 #nhos
http://teamnolan.weebly.com/

Pictures of Happiness

My evening got away from me. I was going to go to sleep and provide an update in the morning, but I couldn't fall asleep, so I decided just to send a quick message!

Nolan is doing great on the 8th floor. Cardiac and neurologically speaking, Nolan is doing well. PT and OT worked with Nolan today, and he is looking great. Doesn't really like to be on his tummy, but loves to lay on his side. The transplant team is REALLY happy with him and hopeful that the perfect fit comes for him soon.

To keep this nice and short, Matt provided me with a lot of pictures today. I will let you view for yourself the day Nolan had. He is doing great. We just need that PERFECT call.

Definitely more to update tomorrow. Hope everyone had a good day - and GOOD NIGHT!

#nhos
http://teamnolan.weebly.com/

Happiness Returns!

Working on his rolling skills.

Loving on his Sophie.

Worn out!

Staring at his fish.

Tummy time!

Out of the CICU!

It is official! Nolan is out of the CICU. They made the move this afternoon. Matt says the room is super nice, spacious and more homey. Prior to his move he had a total dressing change and they replaced his VAD pump. They didn't replace it because there was any major issues, but more because he was going to a new floor and they wanted it fresh so the team on the 8th floor can watch it from a clean state. After that was done he was moved.

Other than that, Matt says that Nolan had a pretty "boring" day. (Which we like!) He had physical therapy today and Matt said they actually did tummy time with him! They use the Boppy pillow and placed him on an angle so the VAD wasn't totally in the way or in danger. Matt said he was not too keen about it, but PT was happy with how he did. It's got to be hard, he hasn't used his core in almost 2 months! I believe he also had OT come by and practice eating again. Other than that, Matt said everything else is pretty much on course!

I will admit that I am nervous to be on another floor. We know all the nurses in the CICU and I fear something is going to happen. They told us that it seems whenever they send a heart transplant candidate out of the CICU they are back as quickly because they get THE CALL. I know we are all ready. I have been feeling a little anxious the past few days. Like my husband said when I told him this earlier today, I think it's because Nolan is doing well and in a good spot, so my thoughts aren't focused on whatever critical issue he is going through. Now I am almost looking back at everything and it's all hitting me. I try to take everything in stride, but sometimes the mind wanders about the actual transplant, recovery, life after...that is when my panic sets in.

I do know this. Nolan is lucky to be born into our family because we are held together by so many peoples support, prayers and love. So, I know we will make it. It all can't happen fast enough. Who know what tomorrow or this week will bring! Just have to remain positive and optimistic.

I have a feeling it is going to be a long week :) I hope you all had a good Monday!

ONE MORE DAY CLOSER!

#nhos
http://teamnolan.weebly.com/

A Family Weekend

Hello everyone! Sorry I didn't provide an update yesterday. Nolan is doing great! We had a really nice weekend as a family. Riley got to see her brother and talk with him. I was amazed by the way he looked at her. I think he remembers who she is! Riley spent a lot of time playing with her dad. She is growing up so quickly, I don't want to miss it during these crazy times. Currently Matt is in Pittsburgh for two weeks and we alternate, except I only stay one week. The weekend between Matt's two week stay we are going to start having Riley come with me to Pittsburgh. It's hard for Matt to be away from Riley for over 14 days. And hard for her! Also, it's good for us all to be together as a family.

Saturday we spent the morning with Nolan. He still has bouts of agitation and there's no real reason behind it. We think it is a combination of teething, wanting to move around but he can't, wanting to be held, etc. We have him sitting up in the purple chair for the entire morning, and he does enjoy that. Nolan also had his first taste of pears and carrots! He loved the pears...carrots, not so much. Matt, Riley and I went back to the Ronald McDonald house to watch the Penn State game so Riley could nap. The entire day was nice and relaxing. For dinner we went over to our friends house, Ajay and Ang. There are a group of my friends from Penn State, who all happen to live near the hospital, so we are very lucky to have all of them so close. We had delicious dinner, desserts and drinks - so it was a very FUN night! Matt and I need these nights here and there. Helps us feel normal for a period of time.

This week coming up Nolan will probably be transferred to the 8th floor where he will wait until his heart arrives. Everyone is having feelings that it is going to happen sooner rather than later, but I just want to take everything day by day. I hate to get my hopes up. I know it will happen, and I feel it will at least before the new year. I am ready to start 2014 on a positive note!

I hope everyone had a great weekend. We did, and now it's on to another week! Our Monday tradition continues, Riley is (supposed to be) sleeping next to me. :)

ONE MORE DAY CLOSER!

#nhos
http://teamnolan.weebly.com/

Back In The 'Burgh

Riley and I made it to Pittsburgh! The trip got interesting around Murrysville (right outside the city). First, Riley made me pull over because she said she "poopied." So, I checked and there was nothing. Then we kept driving and she was still whining saying she "poopied." Her whining got worse and worse. Then she started screaming and began throwing up all over herself. I was stuck in traffic, she was simultaneously screaming and throwing up. Finally I got us pulled over, got her all cleaned up and her seat. I think it was just car sickness because she is totally normal now. I am scared to drive her home!

After getting situated in the apartment at the Ronald McDonald house, we all went over to see Nolan. He looks amazing and like his old self! He is trying to lift himself up, moving his arms around, chewing his hands...all great to see. Matt said the rest of the day was good. When I was over there they were looking at the VAD pump and discussed some build up that has seemed to increase. I heard them discussing the possibility of having to place on a new pump again. So, more to come on that tomorrow. He heparin level looks a little higher than when I was here - and I saw baby food out, so I think they may have dabbled in that! I will get a better idea of what ALL has been going on tomorrow. It's hard to fully discuss the entirety of everything between Matt and I, so I will get the synopsis of the week tomorrow.

Tonight we are just relaxing in the apartment, watching some hockey and ordered some dinner. We were hesitant to take Riley out after her episode on the way down. I am looking forward to a relaxing weekend my whole family!

More to come tomorrow! We hope everyone has a great weekend!

#nhos
http://teamnolan.weebly.com/

Nolan Website Up and Running

I just got done getting my house together before I head out for the weekend, so this will be a quick post! That also means that I really don't have much news to report today because Nolan has continued to do well. He still has some agitation issues, so this morning they placed a call to GI to make sure there isn't something going on with his belly. Not sure if he saw them today or not.

He did have an echocardiogram done yesterday, It did show that he developed a mural thrombi, which are clots adherent to the vessel wall of his heart. It is nothing they are alarmed about, but they will keep a close eye on it. They also increased his heparin level a bit, so this should possible help dissolve the clot.

Other than that, Nolan had an exciting time with OT today. To help with his teething and learning how to suck again, they gave him a Popsicle! Matt said that he LOVED it! He also got a bath today and Matt said that when he rested he looked so peaceful and seemed to actually get some real rest.

So, another good day! Riley and I had a nice night. I came home to my mom and Janice and Fred Springman hanging out with Riley. Then my good friend, Melissa Koch and her baby girl, Abby came over and fed Riley and I some delicious stew and we watched the girls beat each other up. I think Riley forgets how to share! That will change soon enough!

Now, on to some official announcements. One of my great friends/co-workers created a webpage for Nolan Heart of Steel, with the help of a committee of friends who are planning an amazing event on February 23, 2014. By going to http://teamnolan.weebly.com/, you will be able to access information about the upcoming event, you can shop for Nolan Heart of Steel items (bracelets, jewelry, t-shirts) and learn more about dilated cardiomyopathy. The website is in the beginning stages and we will continue to update, so mark this site in your favorites! :)

Thank you everyone for the support. Our little boy is the luckiest guy to have so many caring people checking on him every day. Riley and I are excited to get there to see him and hug daddy!

ONE MORE DAY CLOSER!

#nhos
http://teamnolan.weebly.com/

Waiting Patiently - Kind Of

It was a good night for the McLaughlin's in Pittsburgh and the McLaughlin's in Muncy. Not only that, when Matt and I had our morning call he really had nothing new to update prior to rounds with the team of doctors. He said that Nolan was pretty agitated, but they think it was due to one of his sedation meds running low and they took him off of round the clock Tylenol. He is still teething, and weaning from sedation (which causes headaches) and teething at the same time has proven to be the pits.

After rounds Matt called me and said, "Wow, that was an interesting rounding." Turns out the neurology told cardiology and the transplant team that Nolan is set to go should a heart come for him! We are 1/2 a week ahead of schedule! That is some exciting news, I am beyond anxious for the day to get here. Other than that, they decided to start his round the clock Tylenol and focus on keeping him comfy since yesterday he seemed to be in a great spot.

He had PT and OT come by today. OT let him try out the bottle again. Matt said he did a little better, but was still a little "gaggy." Matt said by the end of the day he was himself again. No word on when we will move to the 8th floor. So really, the waiting just continues.

Tonight Riley and I went over to our great friends, Jon and Lindsey Houseknecht, house to eat dinner and play with their sons, Jay and Jordan. It is always fun to see our kids interact with one another. The boys were wear their Nolan Heat of Steel t-shirts - more information on them SOON! Lindsey made a delicious home-cooked dinner - and it's always great to be with any of the Houseknecht's, as they are like family to us. The weekend is quickly approaching! Riley and I will be heading to Pittsburgh this weekend. I am excited to have a weekend with my little family. I am working on getting Riley healthy...she has a little cough.

Just a random comment, but, can anyone believe that Thanksgiving is in two weeks? All I have to say is...WHAT A YEAR. When you look back a pictures from a year ago, 6 months ago...I think, WOW, I had no clue our lives were about to completely change. And really, I have taken many positive things from this situation, but I am READY to start 2014 off on a good note. Hopefully with a new heart and close to being on our way home. I truly wish everyone a good rest of the year...but an AMAZING 2014. I know too many people that have had a rough year also. I know that bad things happen in life, but I know many people that deserve some GOOD.

Off to bed. Hope everyone had a good first half of the week and is ready to ease on into the weekend (and a little warmer weather I hear!)

ONE MORE DAY CLOSER!

#nhos

Happy Seven Months!

It seems like years ago that Nolan was born. For some that don't know, seven months ago on April 12 I gave birth to this super hero. In fact, he WAS born a super hero. I went into labor at 33 weeks and on the day of my 34th week of pregnancy the doctors felt it would be best that Nolan be born via c-section. After 5 days in labor (that's right, ladies!) Nolan was born perfectly healthy weighing 5 lbs 4 oz and 17 inches long. Only spending less than 4 hours in the level 2 nursery for observation, Nolan spent the rest of the time in our room with us. He was such a fighter then, and still continues to win every battle that comes his way.

Two weeks later is when Nolan started presenting respiratory issues. After three hospital stays he was diagnosed with periodic breathing and fought several viral infections. It has been the longest 7 months. I think to myself that in the next 7 months I could quite possibly have my family all with me and be in the process of putting the pieces of our life back together. It is actually more than a possibility, I KNOW we will be in the process of getting OUR lives back. The life Nolan deserves and the life Riley deserves. I can't wait.

SO - happy 7 months to our super hero. He is doing AMAZING. So amazing that they are discussing transferring him to the 8th floor, which is a step down unit, where he will stay until his new heart arrives. All of his tests keep coming back great, he is on the perfect level of heparin where his PTT levels are perfect and Matt tells me he is "waking up" more. (they are still lowing his sedation, so he is more himself!) The doctor's seem hopeful that a heart could be coming soon because they have not had a call with one in Nolan's range for over 4 weeks. I think everyone is just so anxious because they know the time is so near, he is in good health and they don't want anything to set him back. He is ready (well, really will be after Friday. That is when neurology is giving it the OK.)

We are heading into mid-week! Tonight Riley and I went over to my good friend's house and joined a group of amazing ladies who are planning a benefit for Nolan. There's more information to come soon, however EVERYONE mark February 23 on your calendar as Nolan - Heart of Steel Benefit. I will provide more information soon, I just wanted to start spreading the "save the date." It will be held in Williamsport at Benjies. It is going to be an awesome event!

Again, thank you all for your support, kindness, prayers, love and compassion through this. It is going to be a long road, and because of you all, we don't feel alone. No matter what, we have an amazing "team" fighting for Nolan and for us. We appreciate it more than you know.

Another day gone, and a new day to conquer the world and continue to keep fighting the fight. He amazes me!

ONE MORE DAY CLOSER!

#nhos

Happy Veteran's Day!

 

I am trying something new and seeing if readers are able to view this video of Nolan. If this is a success, we can try to include some more videos in the future! Matt sent this quick video via text, so I thought it would be fun to share.

Happy Veteran's Day to all those who selflessly serve or have served for our country. Nolan is a hero in his own right, but there are so many men and women in the military that are aware of the dangers of joining our armed forces, but yet make the decision to fight for our country's safety and freedom. The bravery amazes me! As many of you know the military life is very important to my family. My dad served in the military for 20 years and my sister served for almost 8, having had to go to war twice. I am so lucky that I got to live my first 16 years of life moving around with my family, living in different areas, meeting so many wonderful people, watching my dad climb the ranks...it is definitely a different lifestyle, but one I am proud of. It made me who I am and created an amazing family bond I am so grateful for.

Nolan had a great day today. Matt reported that he got a lot of his weekly labs/tests done today. His EKG came out great and they didn't have to increase his heparin because his PTT levels (Partial thromboplastin time is a blood test that measures the time it takes blood to clot) was 74 (his goal is 60-80). I think Matt was trying to have them do a CT scan or head ultrasound, I am not sure where he got with that. But, Matt said he looked amazing. Moving around a lot, chewing on teething rings and sitting up. He said that he did great in PT and OT, and music therapy came again, which he loves. One of our transplant doctors said that Friday is "the day" when we are back on course and ready to receive a heart. He did say that if one came on Wednesday or Thursday, they may have a quick conference to consider. I am so anxious and still in shock that we are really in this situation. I am not sure I will ever get over it. He is truly amazing and so are the people in Pittsburgh caring for him. I am thankful for them all! 

I have had people asking me about how to receive the red "Nolan - Heart of Steel" bracelet. I will be providing more information on that tomorrow. We also have a wonderful group of ladies planning an amazing benefit for the Nolan - Heart of Steel Fund, which my dad recently created. I will make sure to get all of this information on the blog site (http://nolanheartofsteel.blogspot.com/), as well as Nolan's Facebook page. I can further explain what our hope is for the Nolan - Heart of Steel Fund tomorrow. We are in the beginning phases of this and learning, so bear with us! We also want to extend our sincere thanks for all the wonderful cards and love we have received from people. I am slowly getting everything organized and just wanted to make sure you all know how much we care about each and every one of you. I wish I could personally come hug you all!

Well, I am going to call it a night. I hope you all had a good start to the week. Your love and prayers are certainly giving our little guy amazing strength. Keep it coming!

ONE MORE DAY CLOSER!

#nhos

Fun Weekend

I am sorry I didn't provide an update yesterday. All is well with Nolan, so no worries! In fact, Nolan is doing WONDERFUL. He is officially off of his oxygen and weaned back off of the precedex (sedative). I love the weekends because I get to see Matt. Sunday's are not fun. It is hard to leave Nolan, and Matt. I am so happy when I walk into our house and I get to see my Riley Roo. I don't know what I would do without her! She is currently snuggled next to me sleeping. My new Sunday night tradition when I get back home. I love every moment.

SO, back to our super man, Nolan. He is looking awesome. Even all the doctors made comments of it this weekend. I think now that we have his sedation figured out, he is on a good path. He really has made some amazing improvements from the strokes. He is moving his head to the right to compensate for vision issues, using his right hand more and seems all around more active. We had him sitting up in a chair and he loved it. His VAD pump still has a small clot, but they are happy because it looks like it is smaller. They have continued to up his anticoagulant medications and in one week neurology says that he is good to go if a heart should come. He has not been taken off the list, however if a heart would come tonight or sometime this week they would have to deny it and take him off the list. So, I just hope next week is the week! He is so ready and so is everyone else.

We had a great weekend. My parents came with Matt, and Collin (Matt's brother) came on Saturday. I do love the area around the hospital. There are so many great restaurants, bars and bowling! We bowled a game on Saturday and it was a blast. I barely left the hospital this week, so it was nice to get out and let loose a little. It's always great to see Matt's brother. He is in his last year of residency at Penn in Philadelphia, so we don't see him too often. I know it's nice for him to get a moment and have some fun.

Well, Matt is now in Pittsburgh taking care of our little man. I pray he has a great week and we get some amazing news next week. It's so strange being at home. It takes me about a day or so to feel some sense of comfort. Just doesn't feel like HOME when my whole family isn't together. I long for the day when we are all together again in our house. Some day, but that day just can't come fast enough!

ONE MORE DAY CLOSER!

#nhos

Super Hero

Believe it or not, my days go pretty fast here. I can't believe it's Friday! I am starting to get anxious because I know I head back home on Sunday. I know Matt takes excellent care of him, but it's hard being apart. I am excited to see my girl, though.

Nolan had a pretty sleepy day today. He is in the midst of sedation change ups, so I think he was extra sleepy today. He had a GREAT night last night. I loved it because when I walked in early this morning, the nurses had him dressed up in a Super Man t-shirt and leggings. I knew when I saw him dressed and sitting up that it must have been a good night! I think we are currently on a good track with sedation. They are weaning the precedex, and the patch that they placed on him yesterday should be starting to kick in. He is still on methadone and Ativan, and Tylenol for his teething/headaches. The teething seems to be a little better. He will actually let you touch his mouth now.

Cardiac wise everything is the same. They raised his heparin level again, and I am not sure if they started that other anticoagulant. The VAD pump looks the same. The clot that is currently there actually looks a little smaller, so that is great news. One of the transplant doctors spoke with me today and said neurology wants them to wait to do a transplant for at least 2 weeks. Sunday will mark one week, so they are saying by next weekend he should be good to go. The transplant/cardiology team wants to try to compromise and say by the middle of next week should everything neurologically remain the same. SO - more on that soon. Let's just hope a heart doesn't come BEFORE then.

He is looking great as far as movement and visual aspects are concerned. Even better than the day before. I worked with him today using the gym, we sat him up a bit and I even held him for about an hour. OH! I changed his diaper today, too. HA! First time since September 30! It's kind of scary with the VAD right there. If anything gets on the VAD or the dressing they have to do a complete dressing change which takes about an hour. Nolan has been known to pee and poop on people. In fact, two days ago I saw him literally shoot poo across his bed. Pretty amazing. I think people will be talking about that for awhile. It's in the notes as a warning. :)

Other than that he had a good day. He seems to be kind of nauseated, he threw up a few times. I think that is due to different sedation meds. Music therapy came by and played the guitar and sang to him for about 30 minutes. I thought it was so cool. I had to hold back tears. For some reason the music made me sappy.

My parents and Matt are on there way. I am excited to see them, hang out with Nolan for a bit and maybe go out to a late dinner. If things continue to go on this course, I think we may be golden. I don't like to get my hopes totally up, but I just have had a comforting feeling lately. So, I had Bob Marley in my head yesterday, and today I put on some Pandora for Nolan...and what was the second song? Bob Marley's Three Little Birds! A sign? I hope?

Everyone - have a great weekend!

ONE MORE DAY CLOSER!

#nhos

Gonna Be Alright

A quick post as we slowly creep into the weekend. I have a dinner date tonight with my best friend from college, Alisa. I am excited to get out because I have been here all week and I was only going to leave if Nolan was having a decent day...and he is!

Nothing really new to report (which is good!) His agitation was bad again overnight, so during rounds this morning they basically discussed what they can do to make sure he is comfortable. So, they made some sedation changes, some that will not take effect until tomorrow or the next. But, nevertheless, he seems much more comfortable today. I hope the night is the same story.

Neurologically speaking he is doing well. They did an ultrasound of his head today to compare with the CT scan to see if they are able to monitor the bleed. I did not hear anything from that, so everything must look OK. Physical therapy was so happy with his progress today. He was able to track movement, moved his head to the right and was playful. Nolan's flirting skills were on ultimate high, he was smiling and winking at the therapist. I think he likes the fact that they play with him and don't poke and prod him like the nurses.

On the cardiology side of things, he had an EKG done today. I heard nothing negative and I go by the "no news is good news," so everything must have looked OK. They raised his heparin level again and also, tonight, added another anticoagulation medication. Slow and steady climbing seems to be working, so that is what they plan on continuing. He does have a very small amount of build up in the pump of the VAD, but that was expected for the low levels of anticoagulation he is receiving. So, they will just continue to monitor closely. A VAD mechanic is in here hourly checking on the pump.

I got some smiles today, which ALWAYS brightens my day. I feel like we are sliding into a good weekend. He started some of those new sedation meds which should start working by tomorrow/Saturday, so hopefully he stays happy and calm. AND hopefully the anticoagulation levels continue to rise so we are ready for a heart when it comes. There have been two transplants done here in the past week or so (so I hear). The word is that they come in bundles, so maybe our time is coming soon! Not too soon, of course. Give us a week and I think he would be ready! Once we are close and I know we are ready for a heart, I will go more into that process. I hear it is like Christmas morning as a kid. I already get butterflies in my stomach thinking about it.

Tomorrow is Friday and I get to see Matt! Also, my parents are coming, so I look forward to seeing them, maybe getting out a little. I just have a good feeling today. I have a little Bob Marley playing in my head, "Every little thing, gonna be alright!"

I hope everyone is as ready for the weekend as I am! Keep sending those prayers!

ONE MORE DAY CLOSER!

#nhos

Growing Pains

I ended up not leaving Nolan's room last night until 10:45 pm. He got increasingly angry through the evening so they gave him his sedation earlier and it seemed to help. I got back to the Ronald McDonald house and went to bed, only to get a call around 12:30 am saying that he was inconsolable and if I could come down to see if mommy would help. When I got there I could see they were preparing to take him somewhere. They decided to get a CT scan done just in case the changes in his behavior were due to something neurologically. They also started him on an IV drip of precedex, another stronger form of sedation. It is important to keep him calm because when he gets angry his heart rate increases, which makes your blood flow faster and this could be dangerous should bleeding on the brain start again.

They returned from the CT and he seemed a little calmer. Radiology called and said the CT looked the same, no changes. WHEW! Why all the agitation? The doctors think it could be just the weaning process of sedation, scattered sleeping patterns and, what I thought all day, TEETHING! I felt and he is cutting teeth both on the top and bottom. I feel horrible for him. You can tell he is so uncomfortable because he is rubbing his mouth and the side of his face. Just because they are in the hospital doesn't mean they stop growing! He does look longer, he has been gaining weight and he is definitely growing more hair. So, they ordered him some Orijel and it seemed to help him through the day...along with the precedex.

Today he got some physical therapy. He seems to be doing well on the right side and also visually improving. Occupational therapy also stopped by and we worked on some feeding. They increased his heparin and will continue to do so while closely monitoring any signs of neurological distress. If we stay on course he could be up to the anticoagulation standards that meets the recommendations for a heart transplant. Again, he is still "listed," but they probably would not accept a heart should it come tonight. If all goes well, we could be good to go by the weekend! EVERYONE is ready. The cardiothoracic surgeon, Dr. Peter Wearden, said to me, "don't worry, it will come...it always does." He is an amazing surgeon, I have learned. He is actually currently in a leadership role developing a VAD for children, ages 0 - 2 years. Read this article. It's amazing.

So, I am hoping tomorrow I tell you pretty much the same. Increasing heparin, no neurological issues, continued weaning of sedation (precedex) and on our way to getting THE CALL. I have moments when I think to myself...I can't believe this is happening. I find it amazing how we naturally adapt to life situations and you find ways to cope and get through tragic situations. There's nothing more we can do but LIVE and be there for our children. That is my number one job, to protect them. We are doing everything we can for our baby boy - and I know we are in the right place.

WELL - we are sliding into another weekend. Excited to see Matt and my parents are coming, too! I also got a call from Collin, Matt's brother, that he might be making an appearance as well. Hopefully Nolan is having a good weekend so we can all enjoy him and maybe some time away from the hospital.

Back to see Nolan and HOPEFULLY getting some sleep tonight. Of course, I would stay up all night with my Nono if he needed me. I am HAPPY to do that!

ONE MORE DAY CLOSER!

#nhos