One Week Since Transplant

Four months ago at this time Matt and I were sitting at Hershey Medical Center waiting to see our son, having no idea what was going on. I can't believe everything that has happened since, how much we have learned, the people we have met, the kindness we have endured, the wonderful doctors and nurses who have saved him and how much more we have to go. It is exciting that Nolan received the gift of life, but we are still in a battle. Nolan has had a pretty tough couple of days dealing with agitation, constipation, swelling and draining issues. Before I move forward, I do want to say that he is OK! His heart is beautiful and his other major organs are fine. It is the balancing act of medications, feeds and reactions to all of this that has caused some problems.

Yesterday was a busy day. Long story short, we noticed throughout the day that Nolan was retaining fluid and becoming more agitated. Earlier in the day they stopped feeds because he seemed sensitive to touch around his belly, and an X-ray showed a lot of air and build up. Towards 7 pm an X-ray showed some fluid around the left area of his chest. The director of the CICU, Dr. Munoz, decided it would be best to drain this area of the chest (which I am so thankful for him!); it was good that we did because right away 110 cc of fluid came out. They did not think they would have to do the right side, but decided to and got about 60 cc of fluid. He looked so much better after! It turns out that there was an issue with his broviac that was placed during transplant; it displaced within the past day or so, probably from removing his initial draining tube, which was causing medicines to go into the empty spaces. We are glad this was quickly found. Around 9 pm last night we went down to interventional radiology where they removed the broviac and placed a picc line.

I stayed with Nolan in his room over night. He was pretty agitated through all night because he got off of his scheduled sedation medications, and he received a few doses of strong sedation for the chest tub procedure and the picc placement. He probably only slept about 1 full hour last night. By morning, he physically looked so much better, and thankfully he rested peacefully most of the day. As the day went on his agitation became less. I think tomorrow will be a little bit better and hopefully we are back on the recovery path. I am thankful for our wonderful nurse yesterday, Jim and Dr. Munoz for acting so quickly once they realized what the problem was. There are people in this unit that are good at what they do!

Today was better than the last. He slept for most of it, and we were all OK with that! He really did not sleep for about 2 days, so he needs it. His incisions look great, the draining is subsiding and his feeds are back on. Out of no where he had a large amount of draining on the left side, so they are testing some of that fluid. More on that tomorrow. I look over at Nolan and he looks so comfortable. It is really the first time since surgery, so I feel at ease. The past couple days have been stressful. I never feared for his life, however it's never fun to see your child in pain.

I think we might be out of the CICU tomorrow and up to join Faith and Cohen on the 8th floor. I have another amazing heart baby that really needs some prayers. His name is Oliver. He has been here since the day he was born and has some wonderful parents. Oliver has some battles ahead of him, which I think he can conquer, but more positive thoughts and prayers for him can never hurt!

I am going to hang out a bit longer with Nolan and then make my way over to the Ronald McDonald House for some good sleep. I hope everyone is having a great night.

Before I end, a HUGE shout out to our friends in Bloomsburg, Millville and Danville for putting together tomorrow's fundraiser for Nolan's Fund. You all are so amazing. Matt and I are so lucky to have so many great friends who are there for us when we are going through tough times. You all know we would do the same for you. We love you guys! Matt, my mom and dad will be there! For those who are looking for something to do tomorrow, head to Danville's Frosty Valley County Club for the Icicle Classic/Polar Plunge/Soiree. I PROMISE you, it will be an event you won't forget. All of our friends know how to make some great memories :)

#nhos
teamnolan.weebly.com
On 1/23/14 your little soul joined the heavens; on 1/24/14 you gave us the ultimate gift. You have changed our lives forever and thank you isn't even enough. We celebrate and think of you every day!

Bumpy Roads Will Lead To Brighter Days

Today has been a tougher day for Nolan. Pretty much the entire day he has been agitated. I am not sure he has even slept a solid 2 hours. We are not really sure what is causing all the agitation...pain? itchiness due to skin issues? withdraw? medicine reaction? Whatever it may be, he is not a happy camper. On the positive side, his echocardiogram came back looking great (better than the day before); his EKG looks good and his liver enzymes look better. I think his anger is because he is very sore, he may have some reaction to medication that is causing him to be itchy, he is teething and he was constipated for a good portion of the day (TOOK CARE OF THAT!) I really am hoping tomorrow is a happier day for him. He deserves it, poor guy.

I talked with one of our transplant physicians for awhile today, Dr. Susan Miller. She put me at ease about everything, not just agitation, just all of this. Nolan is still on his pacer wires and she told me not to worry, that many newly transplanted children are on pacer wires for awhile. It takes some time for the new heart to acclimate to its new body, especially with Nolan's heart being smaller. I asked her a whole bunch of other questions, which she patiently answered and I am so appreciative for that. He has had a high respiratory rate for the past couple days, but that could be do to a number of things. Most importantly he does not appear to be struggling to breath, his look great, his o2 level is spot on (only on .25 ml of o2!) and his color is appropriate. I personally think he was pretty constipated all day. :) Once we got that poo out of him, he did have a moment of peace. HA! He is on 25 ml/hour of formula into his belly, which is all new, too. (Before transplant he was being fed past his stomach into his lower intestines.) I did notice he was pretty gassy, so we may need to consider an even more sensitive formula. We will see.

I also asked Dr. Miller about his birth heart. They will be doing genetic testing on it, as well as further studies about children's cardiomyopathy. I am glad that Nolan can help in the research on why this happens to children and maybe figure out ways to help prevent it. I have so many things I want to do to give back after we are settled into life, and one of them is to definitely help in advocating research for children's cardiomyopathy and the importance of organ donation. Those two things are Nolan's life. I never want anyone to experience this, watch their children struggle or not make it. It pains me to see new patients come in to the CICU scared, helpless and wondering...why me?

I digress! I have a lot on my mind today. LASTLY, I asked to see Nolan's birth heart. The heart that once upon a time was healthy. So, I think I will get to do that sometime soon, as will Matt. I was introduced to our transplant coordinator yesterday who will be are go-to from here on out with any transplant related questions. She handed me THE BINDER. It is anything and everything you need to know about the dos and donts for transplant patients. AHHHH! I haven't opened it yet, but I am told to study. I guess this binder will become a piece of Matt and I. I think I will decorate it.

OK - I am getting tired and wacky! Thank you all for the continued love, support and prayers. No matter what, every day there is some improvement. Never an easy road, but we will make it!

PS: Tonight Penn College's boys basketball team represented Team Nolan during their basketball game! Thank you  Miranda Fink for organizing!

For those that don't have Facebook, I will end tonight with my dad's amazing tribute to Nolan that he gave yesterday in the House of Representatives. GOOD NIGHT!

#nhos
teamnolan.weebly.com

Happy 60th Birthday, Dad!

My first thing I have to include in today's update is HAPPY 60th BIRTHDAY TO MY DAD! He is not only my dad, but someone I have always looked up to my whole life. He would do anything for me, Matt, our kids, family, my friends, his friends, his friends - friends...I guess that is why he is good at what he does. So, if you see the old man out and about, give him a shout out! Dad, did I tell you yet today? :) Love you so much!

So, Nolan had another day of progress. I am so happy for him, and I feel this sense of worry already lifting from my shoulders. Don't get me wrong, I still have moments where I have fear about his recovery, but, I do not really fear for his life anymore. Now my mind is on - I need to clean and disinfect the Ronald McDonald apartment, what is life going to be like when we get home, are we going to allow him to be around large groups, can Riley go to pre-school? That is where my brain is now wandering to. And again, I have to remember we still need to take things hour by hour and as they come. We will soon figure out our new normal!

Today they decreased Nolan's sedation meds; his clonidine and methadone. He seems to be OK with it, maybe a little agitated? When he is awake he is pretty whiny, however, he does have three incision areas in his chest that he just received four days ago. They did remove his draining tube this evening, so he is now officially tube free! All he has are his o2 cannulas, feeding tube, one peripheral line and his pacer wires. They are still pacing his heart, however, I think tomorrow they are going to work on weaning that down. He is on his last day of an anti-rejection medicine, and he will start on two others which he will take forever. He did some PT today...we sat him up, he tried to interact, but honestly he is so tired and sore. His color looks great, his liver looks better and they love his new heart - so we are doing well.

That is really the latest. I will definitely provide more pictures tomorrow!

Tomorrow is already Wednesday!

#nhos
teamnolan.weebly.com
1/23/14 - 1/24/14

Restful Monday for Nolan

I can't believe that after 2 nights of good sleep I am STILL exhausted! I am pretty sure after tonight I SHOULD feel human again. I am also going to try to work out and get back on track with taking care of myself. As I type this I can't stop yawning!

Nolan had a good day. Actually, Nolan really slept most of the day. They put him back on his sedation regimen which he was on prior to transplant, and we are thinking he really doesn't need such high dosing. I am assuming starting tomorrow the weaning process will begin. When I came in this morning they had removed his arterial line and his feeds were going OK. After

rounds they decided to continue with the feeds at a continuous low volume and once a certain amount is done, they let his belly rest for an hour. He is tolerating the feeding and the medications being put through his feeding tube, so that is good. They removed a line that was in his neck (jugular), so I think now he only has one peripheral line in place. A lot of meds were taken off today. Currently he is on two antibiotics, two or three anti-rejection medications (two of which he will be on forever), three sedation medicines, some potassium from time to time and I am totally missing a few others. Earlier they turned off his pacer wires and his heart was beating completely on his own. He looked well, was perfusing appropriately, however, he stopped urinating. They used a catheter to remove the urine and turned his pacer back on so his heart would beat at a steady 130, and he has since had wet diapers. They just think the heart is not beating hard enough to properly function the kidneys, and this is due to his heart being smaller and it learning how to work for a body Nolan's size. We had an echo today and one of our transplant doctors, Dr. Miller, says that his heart looks amazing...as much as said, "perfect." They do not mind that it is smaller, in fact, we were told they would rather them be smaller. Not only that, his new heart is his exact blood type - so, it is the perfect heart. We are lucky and thankful.

Other things from the day, they did an echo, which went well. He had an ultrasound of his liver to make sure it was functioning properly, which it is. SO, I think all in all we had another good day! He still has his drain in from his chest, but I think once that is removed and his heart is functioning totally on its own, we will be on our way to the 8th floor! Probably by the end of the week!

OH! I did get to hold Nolan today. Our nurse even slightly held him in an upright position, which just looks so amazing to me. We are so close. Especially once the drain is removed, which may be tomorrow!

I think I covered everything. You know, it's odd, because a part of me is really going to miss the nursing staff and the doctors. I know we may see some in the future, but many of the CICU and 8a nurses have become close to us, and they have truly done so much for Nolan! Once Nolan is a little better I am going to start getting pictures with all of his nurses, CRNPs, PAs, physicians, transplant doctors and his surgeon, Dr. Pete Wearden so I can keep all of these wonderful people in our memories forever. Some of these doctors will be able to see Nolan grow and thrive - and whenever we are in Pittsburgh I will have to make sure to stop by and see everyone.

UNTIL THEN - we have a lot of work to do here! BUT, we are happy with our progress!

We are off to bed. Thank you for all the continued love, prayers and support!

#nhos
teamnolan.weebly.com
1/23/14...Heart Day 1/24/14

Always Amazing Us

It has been about 62 hours since Nolan has received the gift of life. It has been a whirlwind. There are wonderful moments and still some scary ones. But as the hours pass, the better things are getting for Nolan. He is truly amazing, as are the team of doctors, CRNPs, PAs and RNs involved in cardiac care at CHP.We feel so blessed to have them caring for Nolan, and of course, blessed for the family who so graciously gave our son a chance.

I am still beyond exhausted. I think after one more good nights sleep I will feel like a human being again. I think my mind will be a little clearer, and I am pretty sure a lot of this is going to start sinking in. I still have a hard time wrapping my head around the fact that the heart Nolan was born with is gone and replaced by someone else's. I really haven't let myself go THERE yet, but I know it is only a matter of time when it truly slaps me in the face. Matt and I have been a little emotional today. We have been through so much...NOLAN has been through so much, and it's just hard to believe that we are here. I will never be able to explain the crazy emotions that you go through when experiencing this. My son is going to live. I never was 100% sure that he was. Honestly, I rarely had dreams about Nolan. It has always scared me. But since the transplant, every time I have fallen asleep he is now there. It is so strange to me...but a relief!

So...the update! Nolan got extubated at 9 am this morning. He did really well and I was right by his side. Things were a little up and down after that. Around 12:30 pm he was in a really deep sleep and his heart rate was around 97 (which I have really have never seen before) and I could see he was pretty pale and kind of dusky, however his o2 level was near 100%. He woke up and seemed OK, but he vitals were a little off. So, they turned off his precedex (sedation medication) and order ultrasound to come to take a look around his neck to make sure there was no clotting. Even before ultrasound got there, he started to look better, but they still did it as a precaution. Everything was OK. Around 3 pm he got an NG tube placed (feeding tube); this is pretty big because since we have been here he had an NJ tube, which passes by the stomach into the lower intestines. They started him back on his original regimen of sedation meds...clonidine, methadone and Ativan, all orally through the NG. He has tolerated it so far, that is a good sign that his belly is OK. Tonight they also started slow feeds. They have already pulled some lines, stopped some meds and he is becoming more himself. Tomorrow they will pull his arterial line and his draining tube...then we are free to hold him! It will be so strange without the VAD!

We had a good day. We pray it continues to go this way, however, we know there will be some good and bad days ahead. You are never prepared for that, but realistic.

I will have a lot more pictures tomorrow! For now, I am going to get another good nights sleep and ready to have an AMAZING week!

KEEP THE POSITIVE VIBES AND PRAYERS COMING!

#nhos
teamnolan.weebly.com
Never forget: 1/23/14
Heart day: 1/24/14

Day Two With His New Heart

Two words. SO TIRED. I am looking forward to getting some real sleep tonight.

Nolan had a pretty good day. We are almost 2 days post op without any major complications. The morning started with Nolan's procedure to close his chest. This was actually done right in the room and everything went well. They removed the cannulas from the VAD and stitched up his chest. It is still so crazy to see the core of his body without the VAD. Throughout the day they have slowly been weaning his sedation and keeping a close eye on his vitals. He has been waking up and pretty angry because of the breathing tube. Through the night they will be weaning the o2 so he begins breathing on his own and first thing in the morning he will be extubated. I can't wait!

I really feel like this is all not real. Looking around his room, seeing posters and balloons for his Heart Day is all so crazy! Thinking back a week ago we were living in a world not knowing what each day will hold...and now, here we are. Every day is one day close to home. We will be home within the next two months! We have a timeline on our lives! And just to make all of this as overwhelming as it is, we have Faith, right next door doing well also. We have been longing for these days for so long. Every hour is one closer that we can see our babies with their eyes open, flashing us those adorable smiles. Nolan will be able to move around and be a 9 month old! Faith will be able to breath normal breaths and gain weight. I can't wait to get through the next day or so because I will know we are on the true road to recovery.

SO...all of this happened at such an amazing time. For awhile now we have been planning a surprise birthday weekend for my dad, who turns 60 on January 28. We invited friends of his from present day to back in the past when we were in the military. Ray and Terry Popp, great friends back when they were in their early 20s surprised my dad, along with Mike Kowalczyk, who's family moved along with us in the military for MANY years. Today others showed up who live in our area, Steve and Betty Uzupis, Fred and Janice Springman, and Billy and Melissa Martens - and my dad didn't know they were coming either. It was great to see everyone last night and today. Tonight they have a party bus and are hopping around to various bar/restaurants in Pittsburgh. Matt joined them in their fun and I am here with our boy and HOPING to get some good sleep. I am so thrilled all of these special people in our life got to be here for this amazing moment. A few of our friends are here too, Ashley and Randy Christ, Shannon Wiza, Matt and Courtney Hatchel...we are surrounded by so many great people this weekend.

I really am having a heck of a time even typing, that is how tired I am. To a FRESH start tomorrow. I will send an update once Nolan is successfully extubated...and I will include a photo :)

THANK YOU FOR THE CONTINUED PRAYERS!

#nhos
teamnolan.weebly.com

A Day To Never Forget

It is roughly 9 hours post surgery. Nolan is in critical, but stable condition. He is doing very well and continues improvement by the hour. There are two nurses in here at a time watching over him. Constant monitoring is going on, lab draws, tests, med changes, cleaning and changing dressings, adjusting medications, etc. It is busy, but very peaceful and a sense of happiness. Anywhere we walk in the cardiac units everyone is so happy and cheering...it's a celebration. The thought of it chokes me up how much these people care for our little guy. And SO soon we get to celebrate Faith. We were neighbors on 8a and I believe we will be neighbors in the CICU. It is like the McLaughlin's and Gibson's were meant to be together on this journey. We can help each other through the ups and downs in the coming weeks. Our situations are TOTALLY different, but, when it comes to the fact that our children are having a chance at life because of two families who made a selfless decision to donate their child's organs, there, we are the same. Faith and Nolan get a chance...again, here come my tears.

I will go into more detail about what the coming days hold tomorrow. I am mentally kind of tapped out and I just want my brain to go. I am beginning to get emotional about it all. Thinking about where we started, to where we are today. Looking at his chest you can see a heart beat. It is surreal knowing that this was not the heart he was born with, but one of another innocent child. As happy as I am, there is a part of me on the inside that aches. January 23 we will always celebrate that child's life whose heart lives on in our son. And January 24 we will always celebrate Nolan's Heart Day. It is a new start to life for him.

However, we have a long, bumpy road ahead of us. I am not expecting this to be smooth sailing. I have learned that it is rare when it comes to these circumstances. SO, it's back to taking life hour by hour. Seeing him laying there, no VAD...I can see his chest and the core of his body. He is a big boy! His chest is open and they have a thick piece of plastic over it...acting as skin. You can see his NEW heart beating...alone...with no help. (he does have pacers on his heart because they want it to be beating at a certain rate) It is all...so amazing. The power of modern medicine and the importance of organ donation takes on a whole new meaning in my life. An organ is priceless...as is life.

I am going to sit here and just let life sink in. We may meet my parents, sister and other friends out for some drinks and decompress a little. Nolan will be heavily sedated until his chest is closed, which may be done tomorrow. He should be extubated no later than Monday. THEN, the real recovery begins.

Rest in peace to the sweet angel who saved my son's life. You are now apart of our family and we will always celebrate you. January 24 will always mark a day in life as a reminder of why we have kids, why it's important to love and why giving to others is what makes this world a better place.

I will provide updates tonight if anything major changes...other than that, I will update tomorrow!

HAPPY HEART DAY TO OUR SWEET NOLAN! You are amazing and doing great! So proud.

#nhos

Surgery Officially Complete!

As Riley would say, "WE DID IT!!" Nolan had a successful surgery. The surgery roughly started at 1:30 am and ended about 7:30 am. He is currently in his room in the CICU. Matt and I have not seen him yet, as the nurses are getting him comfortable and adjusted. He is still intubated and his chest is open, along with two nubs of his cannulas from the VAD in place. They will be removed those and closing his chest tomorrow, and then they will work on extubation. They did not remove the cannulas nubs today because he did have a lot of blood loss and it is better to take a day to let his new heart settle and let any bleeding subside.

It has been a LONG, LONG 24 hours. My adrenaline is pumping right now because I want to see Nolan and baby Faith got her call around 4 am this morning! So, it has just been an amazing 24 hours.

Ironically my family was scheduled to be in town this weekend because we are celebrating my dad's 60th birthday. So, my sister is here and her friend, Shannon; my mom, dad...my wonderful in-laws are taking care of Riley. Really, things could have not gone any better. Please pray for a good 24 hours. Once they get his chest closed the real recovery will begin. Dr. Wearden did his surgery and he seemed very happy about the entire process. After he left, Matt and I just hugged each other and breathed breaths of relief. A big chapter closed, a new one opens. A new start for Nolan. A second chance thanks to a brave, selfless act by a family.

We are anxious to see our Nolan...then I am ready to shower and sleep a little. Please keep Nolan in your prayers today, and Faith and her family as they begin their steps. I told Jamie I will be right there with them!

Happy Heart Day, Nolan! 1/24/14. I never thought this day would come. I am so thankful for so much.

#nhos
teamnolan.weebly.com

Update 4 - Looking Good

Nolan's new heart is in and pumping. He is currently on bypass and will be for a little longer. They will be observing the heart to make sure it is functioning properly. Once they feel comfortable, they will remove the bypass and begin observation of his new heart pumping on its own.

The feeling is overwhelming. The thought that he has another child's heart inside of him, saving his life, is starting to hit me. We are so blessed and I just feel like the donor's family are the bravest people I know. My heart aches for the pain they must be going through. I wish I could reach out and hug them. They are our hero's.

All the nurses in the CICU are excited to have their little man back! We are going back into our room that we spent so much time in during the beginning of this journey. I also left out that the room we were in on the 8th floor was the room that our other Nolan was in when he and his family got the call. There are so many amazing coincidences that go on here. So many miracles. Let's hope ours has a happy ending.

January 24, 2014 - a day to celebrate forever. Thank you organ donors! More news to follow.

#nhos
teamnolan.weebly.com

Update 3 - Heart Is In!

Quick update! Nolan's gift of life has arrived and is currently being put in place. We are almost there! Hope everyone wakes up in the morning with news that the surgery was a success!

#nhos

New Date - OFFICIAL Heart Date - 1/24/13 - Day 102 - Update 2

Oh my gosh. The past three hours have been so nerve wracking. The weather has been kind of bad, I wasn't hearing any updates, wondering...did they not like the donor heart, is Nolan OK, did they forget to call me? Well, I just got a call from the nurse. The team with the donor heart is on their way and Nolan is officially into the procedure. The next call the nurse will give me is when the heart arrives. YIKES! I am just so thankful...THANK YOU GOD!

Mommy and Nolan before he went to the OR

I am sure most of you are sleeping, but I wanted to let you know where we are in case some of you are waking up, checking yours phones and wondering.

Once my mind isn't all over the place, I will give you the story on how I found out that we got the call. This is certainly not a fast process. I have been up now for 21 hours, my coming posts could get interesting.

Please keep the prayers coming. I will update with more news SOON! Thank you all for the support!

#nhos

January 23, 2014 - Day 101 - Nolan's Heart Day

WOW. The most surreal moment of my life. I will cover more details later while Nolan is in surgery, but I wanted to provide a quick update.

The donor heart was officially accepted around 3 pm this afternoon. Nolan will head to the operating room at 9:30 pm. He is resting comfortably and looks so peaceful. Just looking at him brings me such excitement, but also so much fear. He has no idea what it about to happen. This is something that will allow him a chance at life. Allow him a chance to be a young, healthy boy. After the surgery, it will be that bumpy road to recovery, but we are ready.

I have to get going. They just said he is getting ready to head out. Thank you all for the prayers! I will update more SOON!

Much love from us all...

THE DAY HAS ARRIVED!

#nhos
teamnolan.weebly.com

Day 100

I would have NEVER thought we would still be waiting for Nolan's gift of life at day 100. It's a day of mixed emotion. You are scared because of all the risks associated with being on the VAD or Nolan getting a virus or infection. You are happy because he is doing so well...probably "healthier" than he has ever been. You are sad knowing that the day is coming and he will be intubating again and going through a critical surgery. You are mad because it's been 100 days. You are anxious to begin new life. The feeling of not knowing what tomorrow will bring or the next has now become the norm. We have acclimated to our new lifestyle of traveling and phone calls. It is not what I would want to be doing, but yet it is OK. We are making life work, but my gosh...the day we are home will be like starting all over again. Nolan has lived in a hospital longer than he has his own home. So, coming home will truly be a brand new life for us...in SO many ways. We are ready, but we are nervous! :)

I am not sure how I really feel about the saying that "everything happens for a reason," but I am thankful that we have had time to get Nolan to where he is today. He is beyond ready for surgery. A month ago we would have been scared...two months ago, frighted...now, EXCITED because we will know he will be OK. So, with the situation we have been given, maybe there is a reason it has taken this long...maybe it is so he is 100% ready for a successful surgery and recovery. Only time will tell.

Nolan is continuing to do amazing. Matt said today may have been the best he has seen him to date. He is doing amazing in PT. He did say that he's not really into eating food, but other than that, his gag reflex is much better, which is good. As with any therapy you receive, being consistent is key. He is so ready to be active and mobile. I can't wait to see him without his VAD and being FREE! Today Nolan had his 9 month wellness check-up. He weighs 21 pounds and received his vaccinations. Nolan is bigger than Riley when she was 9 months...and he was 6 weeks early! I think he is taking after his dad.

PLEASE keep the prayers coming. I want to say that it is going to happen soon...but, I am continuing to take life day by day. The day is coming close. Thank you all for the support!

ONE MORE DAY CLOSER!

#nhos
teamnolan.weebly.com

Busy Morning for Nolan - Day 98

A busy Monday has been had by the McLaughlin family. Nolan started his morning off by trying to pull out his NJ tube (feeding tube). When he does this they have X-ray come in to make sure the tube is placed properly. Well, it wasn't. When that happens he has to go back to IR (interventional radiology) so they can place the tube properly by using ultrasound. Because of that, they had to hold all of his morning medications. He finally got to IR at 11:30 am. Once he got to IR they gave him chloral (sedation med) and placed the tube back properly. After that he was transported back to his room and the nurses did his VAD dressing change. Matt said he turned down PT and OT today due to his medications being behind. Matt did get him out of bed for about an hour to practice sitting and he enjoyed time in his MamaRoo (a step up from the swing!) I guess he loves it! His big thing right now is blowing strawberries and trying to make people laugh. He is a sweetheart...and truly a great baby given the situation he is in. He is a very patient boy! Matt said he had a great day. Still trying to pull out the NJ...I have a feeling it won't be out last time getting that placed back in properly.

So, that was Nolan's day. Back east we had a good day. It was a busy day at work, which makes the days go fast (which I like!) My dad picked up Riley from my house after work and I got to hit the gym. Definitely helps me out more mentally than anything. Then I went to my parents house for dinner. Now another night comes to an end. Riley pulled the scared card and is sleeping in bed with me again. I need to break this habit quickly. (Although right now I don't mind it! It will just be different when Matt is home!)

Another busy day tomorrow. Already looking forward to the weekend with my family! :)

ONE MORE DAY CLOSER!

#nhos
teamnolan.weebly.com
Don't Forget About the Upcoming Events in February!

Back in Eastern PA

This will be a quick update. Another Sunday is about to come to an end, and I am back in Muncy. Lately whenever I leave for Pittsburgh for my week I always mentally prep myself that there may be a chance I won't be coming home when expected because Nolan received his gift. AND, here I am, B\back at home. It is nice to be home but this journey is starting to get to both Matt and I. It is so tough both physically and mentally. BUT, we must continue to move forward and fight. Nolan is surly staying strong, so we have to also. I know we have been saying it for some time, but this has to happen soon. We will hit the 100 day mark this week. SO hard to believe.

Nolan has had a good couple of days. The swing has been a BIG hit for him, so we are thankful to one of our favorite nurses for recommending it and getting it into his room. Riley and I left around 12:45 this afternoon. Riley slept almost the entire drive. Score for me! :) We made good timing and once we were in town I dropped Riley off at my parents so I could come home and get us unpacked. After I went to my parents for dinner and to watch football. Now I am sitting in bed...with my girl, who asked me if we could snuggle. How could I say no?

Thank you all for the continued support and prayers! I am sorry I have no pictures to post tonight, but I will make sure to provide a lot tomorrow (from Matt!) I have a busy week and next weekend my parents are going to join me on my travels to Pittsburgh so we can have a family celebration for my dad's 60th birthday!

ONE MORE DAY CLOSER!

#nhos
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Fun Family Day

As crazy as it is to entertain an almost 3 year old in a hospital for the day, it was so nice to have our family together. There was a moment while Nolan was sitting in the rocking care with Matt watching basketball and I was curled up with Riley on the couch in watching shows, I thought to myself, this is how it is supposed to be! This is what we would be doing if we were all at home together...I guess I should say, this is how it WILL be when we get home. We seriously have not left the hospital or Ronald McDonald House all weekend, and I am totally OK with that. Riley spent a lot of her time in the numerous playrooms around the hospital, a lot of it with Laci, Faith's older sister. So, it was a good weekend.

Nolan had a good day. One of the transplant doctors talked to us today and told us that there was a call the other night, we were #2 on the list and the #1 on the list (in the 500 mile radius of the donor) got the heart. This was not in our hospital, so somewhere else a child around Nolan's age received the gift of life. What our doctor was getting at is the we are #1 on the list in a 500 mile radius of Pittsburgh, which is huge. (and psssst...Faith is #2!) So, he was telling us that it has to be soon. YIKES!

Another fun thing we did for Nolan was put him in a swing tonight. He did really well! I am glad because it is just one other thing that Nolan can do during the day. I feel bad for him because there's about three or four different things we do a day. Getting into the swing is nice because it gets him out of the bed and into a new view of his room.

Well, Riley and I head back to Muncy tomorrow. MAYBE I will be heading back to Pittsburgh early this week??!! Let's hope we get a double gift...one or Nolan and one for Faith. These poor babes have been through so much. They deserve it!

ONE MORE DAY CLOSER!

#nhos
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Day 94 & 95

1/16/14 - post from last night

 

Sorry I did not provide an update yesterday! My dad came into town and we went to the Pens game. It was hard to leave Nolan before he went to bed. We rarely leave Nolan while he is awake. I just don't ever want him to feel alone. So, I had a talk with the nurses and they assured me that they would keep a close eye on Nolan. He had a good day and night yesterday. I think any concerns I do have is that his heart rate seems to be on the higher side at certain times of the day. To me it seems like it happens before he needs his beta blocker medicine, which he gets every 12 hours. I let the head nurse and some of the doctors know, so we decided not to wean methadone today (we wean every 3 days) and we may tomorrow depending on how he looks tonight.

 

So, I can't complain. Nolan has had a good week. My dad and I had a lot of fun at the Pens game. We got to sit in a box and the view was amazing! The new Consol arena is awesome. It was a nice father/daughter night. And now tomorrow I get to hang with my WHOLE family. Riley and Matt will be getting here around 5, so I am super excited to see them. Riley is growing up so fast. She will be 3 in one month! I do not know where the time goes...and I need to start planning a birthday party!

Nolan had a good day. He did some physical therapy and was really putting a lot of weight on his legs! He is really strong so I am not concerned about him catching up on his milestones. I can't believe tomorrow will mark day 95. I am so thankful that his VAD pump is clean and Nolan is continuing to thrive. I just don't want anything to get in the way. My biggest fear.

 

I have had some people as me about Faith. She had a rough start to the week but is now doing better. We are looking forward to getting Riley and Laci together this weekend! Cohen is also doing better and coming back to 8a tomorrow! I am happy all of our friends here are having a good week!

Well, I am off to bed. I hope to bring you all the news SOON!

#nhos
teamnolan.weebly.com

 

1/17/14 - Tonight

 

Hello! Friday is finally here! Matt and Riley got here around 5:30 pm. We spent our evening with Nolan. He is doing OK. His heart rate continues to be on the higher side, so we think it may be due to weaning. We have only weaned once this week, and if his heart rate continues to be high we may put the dosage back to where he was comfortable. The nurses, physicians, Matt and I all agree we just want him comfortable and happy until he gets his new heart.

 

He had therapy today, but we basically focused on keeping him calm. So, we are hoping he has a good night. Nolan has officially been on a VAD longer than any other pediatric patient. Not really a statistic I wanted him to be known for. I am thankful he is doing OK, all things considered. This is all so tiring. More so the day to day worrying. I really have not had a solid night of good sleep in months. It's hard having the family apart. Tonight is nice. Matt, Riley and I relaxed in the Ronald McDonald apartment... the closest to normal in awhile.

 

Well, off to bed. Happy weekend!!

 

#nhos
teamnolan.weebly.com

Party Animal

Thankfully, we are holding pretty steady here and I really do not have much to report. Nolan had a good day. When I came this morning the nurses told me that Nolan was up at 1:30 am ready to party. His new movies that he has taken a liking to is Monsters University and Little Mermaid. Two of his nurses are red heads, so we think he is taking a liking to them. :) So the majority of my morning Nolan slept and I got a lot of work done! Tuesdays he is usually pretty sleepy because of everything that goes on Mondays. Once he got up speech therapy came by, so we had him up in his chair; and a little later OT came, so we got him back in his chair. We practiced feeding him some pears, which he took a little. Not too much gagging, so that is good! I believe the only other major change was that they lowered Nolan's methadone again a little. So, they will continue to do that a couple more times through the week. They rotate the sedation wean per week, I believe. He seems to be doing OK right now.

I had a really productive work day and even ran 3 miles! I was going to go out to eat with my old roomies from Penn State, Alisa and Kelly, but Nolan seems to get really fussy at night before he goes to bed, so I skipped out. He gets his beta blocker around 9 pm and I can see when his heart rate increases, he tends to get really hyper and irritable. So, it took me until about 9:30 pm to get him down and asleep. I was sad to miss them, however, it is beyond hard to leave Nolan when he is awake...and just in general. :)

Today is day 92. It is getting rough. It is hard watching those families we have been with for awhile go through their ups and downs, let alone our own, too. It is tiring. I just feel like something should happen soon, but at the same time it feels like years away. Just need to remember to take everything day by day. Keep my head down and press on. I can't make anything happen faster, we just have to pray that he stays healthy so when that call comes he is ready. THAT is what's most important.

Well, I am exhausted. Tomorrow's Wednesday and I get to see my dad!

ONE MORE DAY CLOSER!

#nhos
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Productive Monday

All things considered, today was not a bad Monday. Nolan had a good day and has been super active, especially tonight. He is kicking his legs everywhere; I think he is practicing to run a marathon or play soccer. It is so good to see him happy and smiling. We just need this to continue until we get that call...and of course after!

As always, it was a busy Monday. The morning started with his echocardiogram and his VAD dressing change. During all of that he had music therapy. (The girl who plays the guitar and sings is amazing! Nolan LOVES her.) The nurses have her come sing and play music to Nolan while they do the echo and VAD dressing change because it relaxes him and takes his mind off of everyone poking at him. I remember when we first got to CHP one of our nurses recommended we get music therapy. I seriously was thinking to myself..."what is that going to do?" Well, I can vouch that it has helped Nolan in SO many ways. If I could have someone playing music in here all day, I would. He loves it!

After his echo and dressing change he had a pretty good nap. During that I decided to head over to the gym the hospital allows us to use and get a quick workout in. It's my goal to try to workout for at least 30 minutes whenever time allows me. When I got back, I found out that one of our friends son was going back down to the CICU because of respiratory distress. His name is Cohen, and he is 4 months old. He has been in the hospital since he was born and is a cute, little fighter! Some prayers and good vibes are greatly appreciated for Cohen and his family! https://www.facebook.com/TeamCohenAllen I helped Stephanie (Cohen's mom) get stuff back to their room at the Ronald McDonald house so she could get settled back in the CICU. We hope to see them back up here with us soon!

Nolan got some physical therapy early this evening. The therapists said he did the best they have seen as far as putting weight on his legs. He is really enjoying getting up, sitting, stretching and doing tummy time. It is so good for him to get out of bed and get moving! You can see the improvement, it's awesome. He is such a fighter and works hard. I can't wait to see what he can do without the VAD. Oh, I hope those days are coming soon. Even though we have come so far, it is so hard to see the light at the end of the tunnel. I pray we get the chance. I pray that the four children waiting for a heart gets a chance (and all the rest of the kids here!)

WELL, I am going to kiss Nolan good night (I already got him to sleep) and head over to the Ronald McDonald for some shut eye. All in all...not a bad Monday. :) Excited for Friday to see Matt and my baby girl!

ONE MORE DAY CLOSER!

#nhos
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Day 90

I can honestly say that I really did not think we would be waiting this long to receive Nolan's new heart. I was very hopeful over the holiday that something would happen, but when that came and went, I am now protecting myself and not anticipating that it will happen tonight or tomorrow...or the next. I think it will happen when we least expect it. And, I am OK with that. I know it will happen...and I know it will happen when it is supposed to.

So - on to a new week. Today is a pretty important day. Not only is this day 90 on the transplant list, but today Nolan is 9 monthsold! He continues to amaze me everyday. He has not had the ideal first 9 months of life, but when he is doing well physically, he is such a happy boy. The nurses all melt because of his luscious locks and infectious smile. I swear, he flirts with all the gals. If a male physician, nurse or VAD engineer is in the room they typically just get a stare down. But if a girl is around, it's all smiles! Already a ladies man.

Nolan had a good day. Nothing new to report. Tomorrow is back to a day filled with therapy and visits from the physicians. All of his cultures from the strep infection came back negative, so if a heart were to come tonight they would most likely accept. He will be on preventative antibiotics for the next 4 to 6 weeks. We are hoping to have a good week since last week was a bit of a rough one. Matt left around 11 this morning, and our plan right now is to have Riley come up next weekend. It is hard to believe that it's already mid-January! It is nice looking at the calendar because I KNOW at least by this summer we will be home. I am looking forward to time at our cabin and spending quality time together as a family...I can't wait. It seems so far away.

I am ready for this week! My dad is coming on Wednesday and taking me to a Pens game if all is going well here. I am excited! Oh, one last thing. I have to give a shout out to some very good friends of ours, Kristen Nau and Mike Callahan. Today they got engaged! We are so happy for them and can't wait to celebrate with them soon!

ONE MORE DAY CLOSER!

#nhos
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Visit From The Big Cat

When I walked into Nolan's room this morning there were two nurses and the VAD tech in here. I got nervous, but they told me not to worry, he just had a huge blow out. :) He is on antibiotics because of his infection, so they are upset his belly a little. He has had a good day! Super bubbly and active, so I think we are back on course. Nolan did have an infection. The cultures came back as a form of streptococcus, so they put him on a different type of antibiotic. This morning they did the cultures (broviac and blood) and they came back negative, which is great! Yesterday if a heart would have come I do not think they would have accepted it for him. Going into a transplant with bacteria like he has can be very dangerous. But, now being on the antibiotic for 48 hours, I believe they would accept a heart should it be the perfect match for him. All in all, things are MUCH better for the little guy, thank God.

Today we had a visit from great friends of ours, Tony (Big Cat) and Autumn Dippolito. They are long-time friends of Matt's from back when he lived in Erie. We all haven't seen each other in a long time, so it was LONG over due to reconnect. We had a great lunch with them and Autumn's parents...shared lots of laughs. Thank you, Dippo's, for coming to brighten our day! And of course, for the amazing cookies (Autumn seriously makes THE BEST cookies on the planet - all the nurses agree!)

I have to cut this short. Matt and I are having a late dinner at a nice restaurant in Pittsburgh called Eleven. I am looking forward to it! With that said, I have to get myself ready and hang out with my little man before he goes to bed. OH, I got some decorations for our room and for some of our friends here. With Valentine's Day around the corner it is the best time to buy all the heart related items you need! (Target dollar bin - the best!)

Hope you all have a great night!

ONE MORE DAY CLOSER!

#nhos
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A Better Day

Packed and ready to head back west! Hard to believe another work week is coming to a close and we are approaching our 90th day on the transplant list. It wasn't the best of weeks for Nolan, however it certainly wasn't the worst. Nolan had a restful night and a good day. The blood transfusion definitely seemed to help and his lab results did come back positive for staph (staphylococcus). Because of that they had to culture his broviac and blood stream; those results will come back within the next couple days. They are not sure if it was contamination in the specimen tested, or if it is truly staph; for precautionary measures he is on antibiotics and is currently still "listed" to receive a heart. It was a tough 48 hours or so. Matt was seeing behavior like he did when Nolan was having major withdraw, so I am happy that he was there advocating for Nolan and making sure that everything was being followed through properly.


So, onto the weekend. Because Nolan had a tougher week, and he could possibly have an infection, we felt it would be best for Riley to stay home. Someone needs to be with him throughout the day and keeping Riley in the room for that long just ends up stressful for everyone...so, she is going to spend her weekend with Matt's parents. I am sad because I was REALLY looking forward to her coming and spending time with some of the other families kids. SOON :)

Matt said overall today was a good day. Nolan enjoyed some music therapy...and again, not sure about PT or OT. Our transplant team and cardiothoracic surgeon were in to check on Nolan a few times to make sure we were still OK to move forward with a transplant should a heart come. So far, so good.

I had a pretty good day at work, and tonight a good family friend, Deb Morin, and her daughter Brittany, came over for pizza and to hang with Riley and I. It was fun to just lounge and relax! Riley is always entertaining, of course! Riley spent her day in Harrisburg with my mom and dad. She got to visit my dad's office and see the House of Representatives. Of course she walked in like she owns the place. My parents said they had a great time with her and she really enjoyed the farm show and hanging our with Pop and Gaga!

Tomorrow I will head out and hope to get to Pittsburgh by dinner. If I do not post tomorrow, I will make sure to Saturday!

ONE MORE DAY CLOSER!

#nhos
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Roller Coaster Day

Happy Wednesday! It's hard to believe we are already half-way through the week. My morning started early at 5 am with a wake up call from Riley. So, I got her morning "milky" and we laid back in bed until about 6:15 am - Riley watching Sprout TV, and I resting my eyes a little longer. Nevertheless, I had a pretty good

day. Riley is in Harrisburg with my parents are the farm show until tomorrow. They said it was a great day and Riley enjoyed seeing all the animals. When they were in an arena watching my dad show livestock (or something like that, not really sure what he does...politicians...), Riley would yell out to my dad, "Hey Pop!" "Be careful Pop!" and my most favorite, she would turn to the crowd behind her and yell, "WE ARE!!!" Yes, I know all you Penn State fans love that one. :)

I enjoyed my evening...I actually went to the gym, Target, grocery store and packed for this coming weekend and next week. I forgot how much you can get done in a night without kids around! It was nice at first, but now it's lonely, I miss my family! I can not WAIT for us all to be together...healthy, happy and at peace. Nolan has had a decent couple of days, however he has been struggling with some agitation again and low blood pressure. They do not think the agitation is because of weaning sedation, but that he is generally not feeling good. His H&H levels are more towards the lower side, and he has been receiving medication to help balance that so we do not have to have a blood transfusion. I think the more blood transfusions he receives, the more he could begin to build up immunity towards various blood types, thereby only allowing him to accept a heart from his blood type. Throughout this evening Matt said his agitation got to a point where it was replicating a few weeks back...very high heart rates and constant crying. Just not a place that is safe for him. So he is now getting a blood transfusion and they are balancing a couple other medications. I am hoping to get some better news tomorrow morning. Like I have said SO many times before, it's a balancing act. One little thing can disrupt so much. I am praying for a good night...for both Nolan and Matt. I think Matt is staying in his room tonight with him.

Before he got real crabby, he did have a pretty decent day. Music therapy came by, which he loves. I am not sure if PT and OT did, but Matt did say he seemed generally happy. We are just so ready. As many know, it is beyond hard to see your child struggle. We can only be the best advocate for him in hopes that the team makes the right decisions and pray for some peace. I am starting to see when it's good, it's great...when it's bad, it can get bad quick. I just hope we are not going in that direction. I am so looking forward to bringing Riley this weekend, but if Nolan is needing a lot of assistance, it just will be hard on all of us if she is there. With that said - prayers for a GOOD NIGHT!

I do have some good news! One of my best friends from high school, Mel, and one of Matt's best friends from college, Vince, had their second baby yesterday at 11:16 pm. Ahna Joyce Myers was born 8 lbs 11 oz, 21.25 inches long. Congrats Mel and Vince!! We love you all so much! And yes...Matt and I introduced them a long time ago at a Penn State football game. :) (PS: doesn't Mel look amazing?!)

Well, we are officially sliding into the weekend! I am off to bed!

ONE MORE DAY CLOSER!

#nhos
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Day 85

I just reflected back to my post on October 14, 2013. That was the day Nolan was placed on the transplant list. 85 days! So crazy to believe. I have learned so much the past 3 1/2 months. Obviously this is not how I pictured life, but I would never wish for another boy. This little guy has taught me and so many SO much in the past 9 months! I am grateful for that...and I have such a better outlook on life then I used to. Sure, there are some days that are horribly tough and I would do anything in the world to take this away, but at the end of the day, this is who we are now. We only live once, so we are going to make the best of any situation that is given to us. This is what I tell myself constantly every day. Nolan will make this, and he will do amazing throughout his life.

Sorry for missing yesterday's post. If you are not on Facebook, I had a valve burst from the pipe to my washing machine resulting in a kitchen full of water. My dad came to the rescue and helped clean and survey the situation. Luckily none of the pipes were frozen, I just think it was something that was on its way to happening. I am glad I was home!

Nolan has had a great two days. Mondays are busy days filled with his VAD dressing changes, broviac dressing change, PT, OT, speech therapy and an echocardiogram. Matt said he did amazing during PT. They allowed him to put more weight on his legs, which he did well at. Matt said he especially loved being held normally. I think he misses the snuggles. With such a busy day, Matt said the he had a really sleepy day today. Today they adjusted his Lovenox (anticoagulant) because his PTT level was A LITTLE off. They also checked his weight to see if his dosing for all medicines may need to be changed. He had his 9 month check up and is 50% for weight, and we aren't sure for height. So, he is doing great! AND he as a preemie! Tomorrow I believe they are weaning a little of the methadone. So far all the weaning has been going well.

Tomorrow Riley is going to Harrisburg with my mom and dad for the day/night. Every year my dad takes part in the State Farm Show and I know Riley will just love it! I will miss her, but I am so excited she will be joining us in Pittsburgh. I am looking forward to her meeting Laci (Faith's sister) and hanging out with some of the heart families at CHP.

I wanted to remind you all about two events coming up in February to support Nolan's fund. One will take place in Danville, PA called Nolan's Heart of Steel Icicle Classic/Polar Plunge/Soiree held February 1. The other will take place in Williamsport, PA called Chili & Chocolate held February 23. Both of these are being put on by wonderful friends of ours who are trying to help out our little guy! I can promise you that both events are going to be amazing and FUN! If you don't know, Matt and I have the funnest friends, so come out and have a good time with us!

I am ready for bed! I hope you all are having a good week and staying warm! I think the highest I saw it get today was 7 degrees! Yikes!

ONE MORE DAY CLOSER!

#nhos
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Icy Muncy

I left Pittsburgh around 9:15 this morning just in case the weather got bad back east. There were warnings of freezing rain that continually got delayed as I was driving, so I made it back in great timing and had some time to get all of our Christmas presents organized into one heap on our dining room table, my suitcase upstairs, my walks shoveled and went through mail. I became overwhelmed looking at my crazy house, so I came up to my parents for pork and sauerkraut (a New Year's tradition). The rain started while we were here; Riley and I went to leave discovering that the entire driveway was one sheet of ice. Playing it safe, Riley and I decided to stay at my parents house. Honestly, being at my house stresses me out because I have so much to do there! So, I plan on getting a good night sleep and back to reality tomorrow!

Matt reports that Nolan had a great day. He got a new mobile in his bed that gives him something new to look at. I think the majority of the day was spent watching football with his dad, which honestly, I think he really enjoys! Tomorrow (Mondays) are a busy day for Nolan. VAD dressing change, broviac dressing change, physical and occupational therapy...he always sleeps well Monday nights!

I heard that the girl who received the heart Friday is doing well. We are so happy to hear that! Always saying a lot of prayers for her, her family and all our other heart families at CHP. Today is day 83 on the transplant list. It is hard for me to say that we are getting close because I feel like I have been saying that for so long. :) I do believe that all children wait for that PERFECT heart, I am just so thankful Nolan is healthy and ready for that day. Let's hope this trend continues!

ONE MORE DAY CLOSER!

#nhos
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Lazy Saturday

I just woke up from a much needed, awesome nap. I am not normally good at napping, but today I think I needed it. (I have learned in all of this that I tend to sleep when I am under a lot of stress and/or worried.) Admittedly, I woke up on the wrong side of the bed this morning. I had all sorts of grumpiness going on. Yesterday was a mix of emotions knowing that a heart transplant took place here at CHP. Matt and I have a sense of nervousness knowing our time is near. We are ready for it to happen, but we also know he is going to get intubated again, pumped full of sedations medicines and this is when our new life will start. Matt and I are in full understanding of the amount of work this will be once we are in the groove of "life." Medications around the clock, physical therapy, occupational therapy, learning how to eat, worrying about germs/infections, wondering what his life will be like and that is to name a few if everything from here on out goes to plan. We are more than ready to take all of that on, it is all surreal. There are four of us on the eighth floor, all neighbors, waiting...waiting for our call. The process and how it takes place is truly a mystery, but I really do know we are all waiting for our perfect heart. Each baby/child is different, and they all have different needs.

So anyway, we have had a pretty lazy Saturday. During my nap I kept thinking someone was coming into our room to give us the news. I think all of this is driving me crazy! :) Nolan is doing great. He is still chewing away on his fingers and really starting to be verbal. It's cute...I think he is trying to tell us something! Tomorrow I will head back to Muncy. I REALLY thought I wouldn't be heading back, but it is time. I miss Riley so much, and I haven't been home since Christmas Eve. I need some time out of the hospital, at home with Riley, at work and see my parents/friends. I look forward to bringing Riley back with me next weekend. From here on out Matt and I will be alternating weeks instead of him being here for two weeks and me one. My hope is that we have Nolan home before his 1st birthday! Nolan will be 9 months next weekend!

Nothing else to report. We are all doing well. The staff here are starting to become good friends, as well as other families (and families who have been in our position!) I am sure Matt and I have made some connections that will last for a long time. We look forward to seeing our heart babies grow up and thrive together!

I am off to take a shower. Matt and Nolan are relaxing with each other watching Duke basketball and the NFL playoffs. We hope everyone is having a great weekend!

ONE MORE DAY CLOSER :)

#nhos
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Day 81

All the doctors have told us...we can promise you, he will get a heart this year! :) Today marks day 81 on the transplant list. We were asked if we would want to know when someone gets a heart transplant at CHP and if we would want to know whether they rejected a heart for Nolan. I said yes to both, and today a child received her gift! We all agree that it's exciting that things are happening here! And they always say that hearts come in clusters, so let's pray we get a few more for the rest of us! :) I hope the surgery went well today, as I am sure it did. Lots of prayers to that little girl, her family and the donor family.

Things here have been good and busy! I was going to leave Thursday to head back home, however with the crazy weather and having a tough time leaving my boys, I decided to stay the rest of the week and through the weekend. I will head back to Muncy on Sunday to see my baby girl! Next weekend I am going to bring Riley with me so she can play with Lacy, Faith's big sister. It should be fun and will be nice to have our family all together.

Nolan has been doing AMAZING in physical and occupational therapy! We have been getting him out of bed, working on his core and rolling. They are impressed! Not only that, today Nolan ate almost a tablespoon of applesauce. I know that doesn't sound like a lot, but this is the first thing he has put in his belly since September 30. It is promising to know that he has the swallowing down and handled the food. Makes me super happy.

Yesterday Matt's brother, Blaine, came to visit us for the day/night. We spent the day with Nolan (Matt and I worked) and went out to dinner. It was nice to see him. We had a snowy day/night...and now the temperature is CRAZY cold.

Knowing that someone received their heart today brings me hope. We are going to get there and this is going to happen! I honestly felt major anxiety all day just thinking about our day, or one of the other kids day that we have gotten to know and care for. I feel like it's not far away us...all of us.

Nolan is about to take a nap, so I think Matt and I are going to grab some dinner somewhere. I hope everyone is having a great start to the new year! I am so glad to spend some time with Matt and can't wait to see my baby girl.

ONE MORE DAY CLOSER!

#nhos
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DON'T FORGET! MARK YOUR CALENDARS!