Another Weekend at CHP

Well, looks like we'll be here through the weekend. This will have to be a quick update as Matt and I are heading to the airport to pick up my sister who is flying in for the weekend.

SO...GI update. It looks like he does have very slow emptying going on. They may be putting him on azithromycin to help with movement, but before they do that they are stopping the Cellcept (anti-rejection drug) for the weekend to see if that is what's causing the GI problems. They are also discussing putting in an NJ tube (feeding tube that goes past the belly) to ensure that he is getting proper nutrients and that he is keeping all his meds. So far he has not thrown up since about 9am, so that is good.

Neuro update. Yep...I haven't done a neuro update in a LONG time. Nolan had a seizure-like episode today. He was drifting off to sleep (luckily doctors were in the room) and he did some head movements and stiffness that presented like a seizure. So, he had an EEG done this morning, which came back favorable. However, because he did have a "seizure" he has been placed on a seizure medicine for preventable measures. This is not totally uncommon for someone who has had a stroke. We have also been weaning Ativan, which is also used as an epileptic drug, and is on very little, so maybe that is why he is showing some of these signs? More to come on that. We have an MRI scheduled Monday morning.

Other than that, he is doing GREAT. He acts normal, is happy and doing well. Just feel like we are digressing, not progressing. I am trying real hard to stay positive, for some reason this past week has been one of my hardest. I need to read some old posts to put things into perspective.

Thank you all for the continued prayers and support! Let's hope we can get to the bottom of this GI and neuro issue so we can move forward.

GOOD NIGHT!!!

#nhos

Nolan the Happy Boy

When I got to Nolan's room this morning he was up and probably the happiest baby I have ever seen. Here is where in life that we MAY have the advantage over other parents with a 10 month old. Our

child was hooked to a machine that made him bed ridden for 101 days having to figure out how to entertain himself, learn how to self-soothe at an early age, fall asleep on his own and build a sense of patience. Not only that, I am pretty sure he felt like complete dog poo during that entire time. Now, he is like..."WOW, this is how I am supposed to feel? Life is GOOD!" So boom...happy baby, except for when he throws up or needs a diaper change. Other than that, he is really bubbly, funny and pleasant. Sorry - had to brag a bit. :)

I have to correct something from yesterday. I thought Nolan was to receive an upper GI endoscopy, however, the test he got was something different. I was allowed to go with for this test. We went to X-ray where they placed dye into his belly and took a few pictures. We then went back to his room and he got three additional X-rays, 30 minutes apart, to see how this dye was emptying. I am not sure what the name of this test was, and unfortunately, I do not know the results. With that said, I am pretty sure we are not going to be discharged tomorrow, which means we may be here through the weekend. Again, not sure...but this is what I am anticipating. Tomorrow morning we should know the results of this test and our next plan.

Nolan had a great day otherwise. He had a few throw ups here and there, but not

as bad as I have seen in the past few days. We have adjusted his feed amounts through the day, so that is probably helping some. They have also decided to speed up his weaning process, which we are OK with because weaning his sedation has not seemed to bother him a bit. The sedation meds could also be why he is throwing up often, which is why they have made the decision to speed up the wean.

He had a great speech therapy session. He actually let me put a bottle in his mouth, with the formula he had been using, and he attempted to suck. He got the motion down a few times and he shows signs of interest, so that is great! I loved sitting in the rocking chair, giving him a bottle. I have missed this for 5 out of 10 months of his life! He looks at me like, "Wait, this seems familiar?" Following speech he had physical therapy and did really well. Physically, we think he will do great! I think once his sternum heals completely, and he feels comfortable on his belly, he will be all over the place. Practice, practice!

That was really our day. As much as we want to be discharged, honestly, we are going to be here anyway. This doesn't deter our normal plan on getting home mid-March after his next biopsy, which is sometime the week of March 17. If that all goes well...we are outta here!!!!

Matt got here today. We haven't seen each other in almost 2 weeks. SO, I look forward to some time with him...and braving another snow storm that I hear is coming. Spring...hurry up and get here!

#nhos

Still Here

Well, another minor setback has occurred. I knew that this problem was going on, however I was hoping it would be nothing and we would move on. Nolan has been experiencing GI issues, mostly throwing up from time to time. They did a few adjustments to see if the vomiting would subside, however, he continues to throw up at least 5 + times a day. Yesterday he had a gastric emptying study done which is a procedure performed by nuclear medicine physicians using radioactive chemicals that measures the speed with which food empties from the stomach and enters the small intestine. Nolan was surveyed for about an hour and a half and his stomach emptied nothing. They are unsure what is going on because it has to be emptying something because he does have poopy diapers. There are some medications that can help assist with the emptying, such as metoclopramide (Reglan) and erythromycin. Some of these medicines can cause problems with his anti-rejections medicines, and the erythromycin is an antibiotic, which they don't like to normally use because if you use antibiotics too much you can build an immunity towards them.

So, what is the plan? As of now I am not 100% sure. Tomorrow morning they will be doing an upper GI endoscopy, which is a procedure that allows the doctor to look at the interior lining of the   esophagus, stomach and the first part of the small intestine (duodenum) through a thin, flexible viewing instrument called an endoscope. Here they can make sure there's no trauma to any of these areas since we have not always had this issue. We should know more tomorrow and have an idea of a treatment plan for the future.

A little disappointing, however, I am also happy that we caught this while in the hospital so we can have it treated as an inpatient. It is a little sad because we have been in the hospital for over one month since transplant; however, Nolan is doing wonderful! His heart function is great and his results from his last biopsy were good. I am not exactly sure what his "status" was, but Dr. Feingold told me that is was good, pressures are improving, his levels of oxygenated blood produced is higher...so, all great news! I think this recovery phase has been tough on us all. We had so many expectations that we would be out of here within 10 days after surgery, and here we are, 33 days post transplant and we are still here. A part of me is so ready to move on and get home, but another part of me was relieved that they kept us! I am crazy?! But of course, I long for us all to be at home together.

On top of all the craziness going on here...learning meds, pumps and how to care for Nolan, I got to see Nolan's birth heart today. I was going post a picture of his heart, but honestly, it was a little much for me. The pathologist first went over what a normal heart and lungs look like. I can't really remember much because the thought that I was physically looking at an actual child's lungs and heart was hard to even fathom. The pathologist also showed me what a normal heart looks like...then he showed me Nolan's. It is really beat up - hard to really explain, but you could see trauma around the heart and how damaged the left side was. It is a different color and the pathologist said that it was a really sick and damaged heart. What was amazing is that the cannula from the VAD was still attached. I actually held his birth heart in my hand and couldn't even believe that in my hand was the heart he was born with. It was the heart that Matt and I created and he had at birth. And now it's in my hands. Life has just been slapping me in the face these past few days, and this was meant to help provide some closure, but instead it made me feel bad. I am so sorry that Nolan's life was given this path, but I feel so blessed that our donor family let us have a second chance. They saved two pieces of his heart muscle that they will keep frozen for any studies in the future that may be able to repair damaged heart tissue; also a piece of his heart is undergoing genetic testing. Am I glad I saw his heart? Yes. I have pictures of it, so it you are ever interested in viewing, let me know.

I believe Matt will be coming to Pittsburgh tomorrow in case we are discharged Friday morning. We are still moving forward with training in hopes we are out of here by the weekend. One step at a time. Good news? Nolan is a happy boy with a great heart. We are much better off than we were a month ago! Have to put things into perspective sometimes.

We are almost there!

#nhos
Check Out the Upcoming Spring Events for Nolan!

Preparing For Our New Norm

I want to start out today's post by saying how amazing Nolan's benefit was on Sunday. I feel like I have been at a loss for words since then. I am so blessed to have an amazing group of friends that put together such a well organized and incredibly fun event. It was so great seeing so many of our

friends and family; as well as members of the community that were there to provide support to our son. I wish I could hug each and every person and tell them how much it meant to me and my family. The day was also a reality check for me. Seeing pictures and the video made me realize how far we have come. Not only that, what our life has now become. I am scared and excited for what is ahead. Tomorrow we will most likely be discharged to the Ronald McDonald House. Today was really hard for me. I am being taught so many things and we are about to be responsible for keeping up his care. Learning how to place his NG tube, hooking up his feeds to his pump, hooking up his picc line to a pump that will administer his antibiotic, the list of meds he receives from 8 am until midnight every day...I really had a minor panic attack and thought to myself, "I can't do this alone for the first few days." So, I called Matt and he is going to join me tomorrow. Thank God. We probably should have planned to be together in the first place, but I really think I was being naive into what goes into his care. It will get easier and we will acclimate - but I was just scared thinking about being alone with him!

Cleaned and ready for Nolan's arrival!

Today I spent the majority of the day learning, organizing Nolan's hospital for the move and my best friend from college, Alisa Zisman, came over and we cleaned our room at the Ronald McDonald house for about 3 hours...top to bottom. So, in my true OCD fashion, I feel a little better having a day of "organizing." Tonight or tomorrow, Jamie (Faith's mom) is going to give me a run down on how she organizes Faith's medicines. She even got me a label maker! (I like her style!) So, with Matt's assistance, a clean apartment and a medicine run-down, I think we will be ready to go!

It has almost been 5 months since the day our life changed. We made it to the day that we have been dreaming about since this started. I am SO happy Matt will be here because this is an important day for the both of us. We have SO much to learn in the next 24 hours. A lot of our instructions will be given at discharge. Nolan will continue both physical, occupational and speech therapy as an outpatient. He did amazing at both today! He actually let me place a bottle in his mouth and he seemed to try and suck. He also ate some pears...actually swallowed them! He is so active, rolling to his belly, grabbing his feet, bringing toys to his mouth...his coordination and mobility seem to be improving well.

Well, I am off to check on Nolan's meds and plan on getting a good nights sleep since our coming nights may be a little hectic in the near future! It's like bringing a brand new baby home!

#nhos

Short Update to Start the Weekend

It is so strange to be home on a Friday night! Tomorrow I have an event to go to for work, so it's up bright and early for me in the morning! So, this will be a quick update because I am exhausted!

Awesome artwork done by Mollie Sullivan - high school senior at
Montoursville High School.

Nolan had his biopsy today. From what they saw already, the pressures in his heart are still on the low side, however, it does not cause too much concern to our physicians because they are getting better, and his new heart is still acclimating to his body. We should find out the complete report from the biopsy by Sunday. Matt said the rest of the day went pretty well. Today is Matt's mom's birthday and one of her birthday wishes was to see Nolan, so she spent the day in Pittsburgh and will come back tomorrow afternoon.

They are getting his new med schedule down, so by the time I get there and trained we will give more meds less times a day. We are scheduled to be discharged to the Ronald .McDonald House on Tuesday or Wednesday. I can't believe it! Tomorrow afternoon I will spend the day packing Nolan's things, including larger clothes because I brought 9 month clothing last trip and he is just barely fitting into them!

Flash Back Friday - less than 1 month

You all can yell at Matt because he didn't send me any pictures today! :( I am so glad the biopsy went well, and we receive favorable reports we won't get another one for 4 weeks. When we are back at home we will probably be working with the Hershey Medical Center's Pediactric Cardiologists and they will be fluent with CHP about all routine tests that are done. Any procedures and for all biopsy and check ups we will go to CHP. That is the plan for now!

After work today Riley and I went to Benji's to see all the wonderful ladies that have been working on the benefit coming up on Sunday. I am so grateful I have so many AMAZING people in my life. These girls have worked SO hard and taught me so much. Everyone has! The power of giving and providing support to others is amazing. It is really one of the best feelings in the world to give to others - and I can't want for Nolan's Heart of Steel's non-profit to do that.

Tomorrow my sister comes into town, and I can't wait!

Off to sleep!

#nhos

Word is Spreading

Things are getting real in Pittsburgh. The word is spreading that we will be leaving soon and it's starting to hit both Matt and I, and all of our nurses, therapist and staff that have been involved in Nolan's care. We started this journey almost 5 months ago (and yes, we have a lot more to go) but the first book is almost over and we are about to start a new one. Nolan's second chance at life. Once he is discharged from the hospital it will truly be the first day of a new life for all of us...and when I say ALL of us, I mean ALLLL of us (friends, family, etc.) It will be awhile, but I can't wait to introduce Nolan to the world again! He has been in the hospital longer than he was out! But, with Nolan being on anti-rejection medicines, he is more prone to getting sick because his immune system is compromised. The experts recommend that Nolan steer clear of large crowds and public places 6 months post transplant, and especially during flu season. So, we may be super germ-o-phobes for the first year or so, but I am sure once we acclimate to life we won't be as scared. We shall see.

The weekend is approaching! I have a SUPER busy one, but a very EXCITING one! I am really looking forward to seeing all of our friends, family and supporters on Sunday at Nolan's benefit, Chili & Chocolate. We have so many wonderful people participating, volunteering and donating. Come out and enjoy this spectacular Sunday Funday!

Nolan had ANOTHER amazing day! Matt says that every day is better. He said he is such a happy boy! It makes me so excited and scared just because we have not had this sort of feeling in so long. Knowing that our baby boy is actually "healthy" is amazing. Like Riley tells me all the time, "Noley isn't sick anymore!" She is right!

We have had an amazing experience with the physical therapy at CHP. There was a core group of ladies that have been working with Nolan since the beginning, and they are overcome with joy to see how quickly he is progressing. Matt claims today was the best PT session ever. Nolan responds well to all the PT ladies because 1. He's a ladies man, and 2. They always play with him! He does get a little cranky when they try to make him put weight on his legs - but what's therapy without a little pain? I really think Nolan will bounce back quickly from a physical standpoint. Nolan also was a big shot during occupational and speech therapy today! He let them put a bottle in his mouth for about 10 minutes, which is pretty huge. It is the first step in introducing it and hopefully giving him some practicing on how to suck. He also ate about 10 ml of pears!

Nolan seems to be tolerating his feeds a little better. Not many throw ups today, and Matt said he only had to do one small load of laundry. Progress! Tomorrow is Nolan's second biopsy. He will go in the morning, and we should have preliminary results by Saturday. Sunday we will know more and I think this will give us a good idea of when we will actually come HOME to Muncy. Yay! Also, I am sure by Monday morning we will know when we will be discharged to the Ronald McDonald House. Matt said the administering of meds is going well. They are looking to adjust his med schedule to hopefully acclimate better to our schedule at home. Slowly he will get rid of his meds and eventually be on the two anti-rejection meds, which he will be on for life.

As our time is coming to an end as an inpatient, we are starting to become a little sad to say good-bye to our wonderful nurses, APPs, therapist, doctors and surgeons that have literally SAVED our son's life. How do we ever repay these amazing individuals? I hope you all know how grateful we are to you and Children's Hospital of Pittsburgh. We made the right decision coming here, not because he is doing well, but because of the professionalism and expertise that is at CHP. I know we will continue to build a bond with many of the people at CHP through social media and visits to CHP for future appointments, but not seeing some of these individuals day-to-day will be hard. So, THANK YOU everyone!

My last bit of the night is a shout out to Ayers family! They welcome Amelia Iris Ayers yesterday at 5:57 am, weighing 6 pounds, 14 ounces and 19 inches long. They Ayers family lost their second child, Eleanor Lily, to cardiomyopathy April 25, 2012 when she was just 8 months old. Ironically, as rare as children's cardiomyopathy is, we live in the same community. So once we found out about each others stories, it was nice for me to talk to Jennifer (Amelia and Elenor's mom). It was the first time I had talked to someone with a similar story and similar feelings. Jennifer has been a big supporter of Nolan, and I am truly grateful for that. Amelia is a GORGEOUS baby girl. I got to hold her, which melted my heart. CONGRATS, AYERS! Check out more about their foundation, Ellie's Heart Foundation, by going to http://elliesheartfoundation.org/.

#nhos
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Million Miles a Minute

I can't believe tomorrow is already Thursday. Life at home goes a million miles a minute. Work is always crazy and then there seems to be something going on at night. Next thing I know it's almost Thursday, which is the night that I prep for my week in Pittsburgh. However, this weekend I will actually be home! Saturday I have an event for work that will be held at the mall; and then Sunday is Chili & Chocolate, that will be held at Benjie's in Williamsport from 1 to 5 pm. I am overwhelmed by the support Nolan has received from the Lycoming county communities, as well as the surrounding communities of Danville and Bloomsburg. I do not even know how to express my gratefulness. I just hope everyone knows how much Matt and I appreciate all the support.
the second benefit for Nolan,

Nolan is doing amazing. He had an echocardiogram and EKG done yesterday, both of which came back perfect. Monday he had his new picc line placed, which went well. Our transplant coordinator suggested us to start home meds, meaning that the nurses basically have us administer meds on Nolan as if we were at home doing it ourselves. So, that started today and Matt said it is going well.  I will have to be taught once I get out there. Physical therapy is very happy with Nolan's progress, especially with rolling and his ability to transfer weight. Occupational therapy and speech continue to work on eating and swallowing. This will probably be our biggest hurdle, so we are going to look into doing intense therapy while staying at the Ronald McDonald House. He is currently up to his goal feeds of 135 ml and hour...maybe 6 times a day (I think)? At night he has 56 ml of continuous feeds. I am doing to say it - the continuous feeds at night are pretty nice. :) No having to get up in the middle of the night for a bottle!


That is really where we are at currently with Nolan. He will be receiving his second biopsy Friday, and early next week we will be discharged to the Ronald McDonald House where we will be for about 4 weeks. So, if all goes well, we will all be under one roof by end of March! So hard to even imagine!

With that said, I am going to have to break Riley's habit of sleeping with me. There's no way I am sharing a bed with both Matt and Riley. Some how she seems to take up the ENTIRE bed!

Hope everyone had a great day - and I would love to see you at Chili and Chocolate on Sunday, February 23!!

#nhos
teamnolan.weebly.com

Happy Birthday, Baby Girl

Dear Riley,

First off, I want to apologize for not throwing you the party you deserve on your 3rd birthday. Albeit a wonderful night with our close friends and family, you will always get the rockin' party we normally give you after this year.

Second, your dad and I are so proud of you! You are growing up to be such a fun, energetic, smart young girl. This has not been an easy time for your dad and I; and I am glad that you (hopefully) do not remember the craziness that has been our life. I want to let you know that when Nolan got sick you were our number one priority. Nolan's ailments were out of our hands, but you, we wanted to make sure life remained as normal as possible. It pains your dad and I to be away from you weeks at a time. You are growing so quickly; even one week away from you something is new. It is sad to not be with you all the time, but know you are with us everywhere we go.

After Nolan was born and we became a family of four, it was hard for both your dad and I. Our world has always been surrounded by you. We almost felt like we were cheating. Your dad even said to me, "I love both of my children equally, but Riley will always be my ONE - she is who changed me forever." When Nolan got sick, there wasn't a soul that could face Matt and I without that look of sorrow and sadness. It's not anyone's fault, it was just a horribly sad situation. But then I would look into your eyes. Your joy, happiness and love for your dad and I is what got us through EVERY day. It is still what helps me get up in the morning. Riley, we would have never made it through Nolan's sickness without you. You are such a blessing and have given your dad and I a reason to move forward in life.

Lastly, life as we know is has changed. You will probably never know any different, but I want you to know how truly special and important you are to us. You make so many people happy, and you are the apple of your dad, Pap and Grandfather's eye (just to mention a few people.) I hope you and Nolan grow up having so much fun together. You are an amazing big sister and I know you can't wait for Noley to come home. I hope you had a great 3rd birthday. Your dad and I are both happy we got to spend some time with you celebrating. You have so much ahead of you...I am loving watching you grow into a beautiful young girl. I am a proud Mama!

I love you forever,
Mommy

Best Weekend

I hope this is the start to many wonderful weekends. Our world is slowly starting to come together. Having gone through so many up and downs with Nolan, when things are going so well you can't help but feel nervous that something is going to ruin it. I pray we are through the worst.

We took Nolan on a ride in his stroller today

All around Nolan is doing great. He acts like a normal 10 month old. He is working on rolling to his belly (almost there!), chewing on anything and chatting up a storm. He has his occasional throw ups through the day, mostly when he gets an oral med in his mouth to prevent thrush and if he gags himself (he has a short gag-reflex). I can not even begin to explain how wonderful it feels to have our baby back. I feel like a load has been lifted off my shoulders. I still have a lot of fears for Nolan, but presently speaking, things are amazing.

Father - Son Bonding

Matt and I suspect that they are going to push to get us discharged this week. We are trying to actually stay this week because tomorrow he will be getting a new picc line placed and Friday he has his second biopsy. We also haven't even started administering meds on our own and been trained on how to care for his NG tube - so, we are hoping to stay through the entire week then maybe the following week be discharged. I get butterflies thinking about it! I am excited and nervous. There's a lot of care involved and meds that he NEEDS to live, so...no pressure or anything. But, someday soon it will be like second nature to us.

Well, I am back at home. As like most Sunday evenings here I have Riley sleeping next to me. We had a lot of talks about Nolan tonight. I used to keep Nolan's bedroom door shut because it was just too hard to look at. But now I have it opened and we are getting it cleaned up and ready for Nolan's return. I had Riley help me and she hung out there a lot tonight, talking about Nolan coming home and how he isn't sick anymore. She also told me she was going to take care of him. I am so happy she still recognizes who he is and that she is a big sister.

Another busy week! I am ready to continue getting our house back together and prepping for us all to be at home. We are SO close!

#nhos
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Happy Valentine's Day!

Up until now I really have never been a Valentine's Day fan. Now, it has a new meaning to me. This day will always make me think of Nolan and all the other heart kids and families we have become good friends with. It is hard to put into words the emotional roller coaster you go through while your child is in the hospital for a long period of time. There are wonderful days where you feel on top of the world, then there are days where the team of nurses and physicians tell you to stay close because they are not quite sure what the night may hold for your child. As most of our children have

 

Cohen's Last Day at CHP

visible scars from their battles, the parents also have emotional scars that will never go away.

Tonight I saw another one of our heart family friends be discharged. Another successful story! Cohen (Steph and Dave's son) got discharged and is heading home for the first time in his first 5 months of life. I am so excited (and nervous, in a good way) for them! Cohen is such an adorable boy, and a fighter!

Sir Ollie Extubated!

And then there is Oliver (or Sir Ollie as we like to call him). His parents, Ashley and Trevor, have been in a battle with his health since the day he was born.  He was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR) at 18 hours old. Ollie has had his fair share of ups and downs. He recently started receiving feeds for the first time ever and today got extubated! We are so excited for Ashley and Trevor, it is such a relief.

Nolan and I were the face of CHP's Foundation Valentine's
Email and Social Media Post

Then there is our Nolan. He is doing absolutely amazing. I get scared because how well he is doing. He hardly cried today! We all think he has felt so bad for so long that now he is like, "wow, this is how I am supposed to feel!" I spent a good part of my afternoon with him on the play mat working on exercises, laughing with him, smiling...I think back to our first moments when this journey started. That fear still sits way inside of me and I can't believe all we have been through. It is all hitting me. I am sad, happy, angry and scared. I am a mom of a child who has had a heart transplant. Worldwide, approximately 300 to 350 pediatric heart transplants are performed each year, representing about 10% of the total number of heart transplants performed. Nolan is one of those 300. Mind blowing.

So, Happy Valentine's to everyone who takes the time to love our son. We love and appreciate you all so much. Our son is coming back. I could cry just thinking about how well he has done the past few days. I pray it continues. His cultures came back negative! For preventative measures he will be on antibiotics for six weeks. Other than that, we are continuing to raise his bolus feeds and should meet goal by early next week. Our biggest challenge will be physical feeds. But, like everything else, he will make it!

Happy Valentine's Day!

#nhos
teamnolan.weebly.com

Best Day Yet

I have to say, today was the best I have seen Nolan since I really can remember. I was trying to pinpoint an actual "time," but I can't remember much at home since all of this started. I think one of the best news of today is that Faith was officially discharged from CHP. They are now considered outpatient and will be living in the Ronald McDonald House for the next 4 weeks. I am so happy for Jamie and Nathan! Their family has been through so much, I can't imagine how they must feel. AND, we are excited to join them SOON!

With that said, there was debate whether or not we should do inpatient rehab for a few weeks, or just be released to the Ronald McDonald House and continue therapies as an outpatient at the hospital. Matt and I were open to either, we just wanted to do what was best for Nolan. They suggested we all go to the Ronald McDonald House because we can continue therapies and get our home life and routine started. Physically, Nolan has been doing amazing! In his crib he rolled from his back to his belly (almost ALL the way). This is HUGE! He is also sitting by himself for a few seconds and continues to get stronger each day. I could see the satisfaction from the physical therapists on how well he did today. They were elated! I think our biggest challenge will be eating. He did well today with speech and OT, actually ate a little bit of pears. Tomorrow I think we are going to try to introduce a bottle. At first we were not going to even introduce bottles, however now I am on the thinking of...who cares if he uses a bottle past the age of 1? The sooner I can get that NG tube out of his nose, the better! So, I look forward to seeing how he does; HOWEVER, my expectations are not high. It will take practice. He is

continuing his bolus feeds and doing much better than last time. They will ease slowly to his goal consumption, and so far, so good.

Our biggest problem...probably one of the reasons why we are still here...the infection. It is still a mystery and when the infectious disease physicians and our transplant physician start talking shop about it, I feel like I am hearing foreign language. After they are done chatting, I have to go to our transplant doctor and have him translate it to me like I am in 4th grade. (and even then, it really doesn't make 100% sense to me) So, I will try to explain the best I can.

We do know there is a gram-positive bacteria present. It is the same growth that presented itself prior to transplant in his broviac. He tested negative for this prior to transplant, so they are not sure how it is showing up again, nevertheless, it is being treated appropriately. There's also a gram-negative bacteria present, and this is the one that remains a mystery. It is slow growing, so they are not sure if it is something from his picc line, and not actually in his blood. With that said, they removed his picc line today and placed a peripheral line in. They will draw labs again in the morning to test his blood from the new line and also sent the picc line to be tested. Tomorrow infectious disease has a weekly meeting for their "mysterious cases" and they are going to discuss Nolan. There they will figure out what this is, how to treat it and for how long. Chances are we will be on the 6 week course of antibiotics via a picc line, which they will place Monday.

Are you lost? I am. And the information above is most likely not even correct, but, this is the best I can do. I was never into science.

Whatever we are doing now is working. Nolan is super happy, laughing, playful, funny...I feel like I have my baby boy back. I can hold him normally, we played on a mat for most of the day, tomorrow we'll hopefully go for a stroller ride...it's all coming together.

Better yet - tomorrow is Friday, and my Valentine will be here!

#nhos
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Happy 10 Months!

I can't believe in 2 months my little man is going to be a year old! Needless to say, these past 10 months have been the most challenging times of our lives. Prior to now, having Nolan 34 weeks early was one of the scariest days of my life. When we found out he was a normal, healthy baby, I breathed a sigh of relief. My life was complete. I had two healthy children and a wonderful husband (and a smelly dog). That seems like years ago. So much has changed and our life will never be the same. I am not mad though; I would NEVER want anyone different. Nolan has changed me for the better. He has taught me more in the past 10 months than I have ever known in my 32 years of life. Once we conquer this battle and acclimate to our new norm, our life will be complete again. I think it will just hit me at the most random time; I will think to myself, "Wow, we did it. I have two healthy children and a wonderful husband. And a really smelly dog." I look forward to that day. I look forward to SO much. Mostly, I look forward to being a family. I can't wait to see Nolan and Riley bonding and getting to know one another again. She will be an amazing big sister. No one will mess with HER Noley.

Nolan had a great day. As the day went on, he seemed more like himself. Smiling, giggling, less agitated. The morning starting off with a nice throw up on our poor nurse. (Felt horrible.) This led to a morning bath. He had an echocardiogram and his picc line dressing changed AGAIN because of the morning throw up. We will meet with infectious disease tomorrow about his cultures. I am pretty sure Nolan will be on a 6 week course of antibiotics; ID (infectious disease) should give me an explanation into this. More on that later.

Today they did Valentine's pictures which was set up by a non-profit group called Zachary's Mission. It is so nice when organizations do things like this for families in the hospital. So, Nolan and I got some Valentine's pictures together. He is a bit swollen, and I wasn't quite ready for a photo session, but it caught us both in our natural state. A good memory together, me and my little man.

After a quick nap, Nolan rocked it for the PT ladies. He definitely likes the ladies...smiling, blowing raspberries...100% flirt. He is doing great with building strength in his core AND I am pretty sure on a flat surface he could roll himself to his belly. They don't advise him to do this right now, but soon enough we'll be able to start tummy time and rolling. While he received music therapy, OT came and we attempted to feed him pears. Didn't do GREAT, but didn't do horrible either. Practice, practice.

We started back slowly on bolus feeds later this afternoon. He did great, so tomorrow they will up the amount. If all goes well the rest of the week, I am anticipating they will start discussing discharge with us. We'll start getting lessons on how to administer medicines and how to care for his NG tube. I am so nervous for this. Also with him being on 6 weeks of antibiotic via IV, we'll have to learn how to care for this as well.

I am SO thrilled we had a good day. I missed my little man's laughs, smile and playfulness. He is such a sweet boy when he feels well. (He is so NOT sweet when he is NOT feeling well.) I hope this trend continues and Matt can start his weekend off by seeing a happy Nolan.

#nhos
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WARM UP WITH SOME CHILI AND CHOCOLATE! FEB. 23

Negative Start, Positive Ending

Late post tonight! I got caught up chatting with some of the gals on the floor. Our little heart buddy, Cohen (mom is Stephanie), is getting discharged on Friday! He has been in the hospital since birth, so it will be a big day for them! Faith (mom is Jamie) is doing GREAT and maybe discharged to the Ronald McDonald House by the end of the week, or early next week! They have been on quite a journey for almost 15 months; so, it is nice to see these heart warriors moving forward in life!

I have to admit that I started my day off kind of feeling negative. I am not really completely sure why. I think it is a mixture of reality slapping me in the face, feeling like our recovery isn't going the way I expected it to and maybe I have the winter blues. I got here in the morning with reports that Nolan had a good night. He still looked very puffy and was on the cranky side; not as bad as before, but still clearly agitated at little things. He will get himself all worked up to the point he throws up. Now, I think this can be common for babies, so I am not too concerned. But, I ended up having to change his bed and clothes about four times through the day. Needless to say, I got some laundry done today.

Because of the puffiness, they continued the Lasix. I do think it is helping very slowly. From the beginning of the day to tonight I can actually see his eyeballs. So, maybe by the morning things will look more normal. He was on two antibiotics; one treating the culture that came back positive and one treating the other culture that has not come back yet. They started him on a new antibiotic that will treat both cultures, so he will be on that for, I believe, 48 hours via IV. We should know about the second culture tomorrow. His biopsy results came back at 0 rejection, which is great! His next biopsy is scheduled for February 21. So thankful!

As the day progressed, Nolan's overall demeanor seemed to improve (as did mine!) He is more consolable, happy, smiling, giggling...so, I know he is feeling better. We worked with speech therapy, and he allowed the therapist to stick a spoon in his mouth. He actually seemed interested in eating (no food was on the spoon, we were giving his belly a break). During PT he was having moments of sitting on his own, moving his core left to right, grabbing things in front of him and rolling to his sides. He is really doing great. I had a meeting with our transplant coordinator to start reviewing our "binder." It is a bit overwhelming and scary, but, it is what our life will be for the first months to a year until it just becomes our LIFE.

Tonight I had ANOTHER wonderful visitor! One of my old coworkers from SH and a good friend, Bridget Stevens, stopped by. She is expecting a baby boy on May 10, so it was great to see her and that belly bump! AND she brought me a Primanti's sandwich...which is like THE SANDWICH shop of Pittsburgh. We had a lot of good laughs, so my day of negativity ended on a positive and happy note. Thanks, Bridget!

I must get to sleep so I can be good for my boy and get some work done tomorrow. I am anticipating us starting back to bolus feeds again, if Nolan is ready. He definitely works on HIS schedule, no one else's!

#nhos
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Puffy Boy

Nolan had a pretty busy Monday. For the most part he was in good spirits and easily consolable. I was told he had a pretty good night with minimal issues, except for a large blow out, which I know he is good at. When I got into the room I noticed his face was pretty puffy. They started him on a Lasix IV in hopes to decrease the fluid, however he is still pretty swollen (just in the face). It looks like someone punched his eyes, the poor thing.

When the transplant team came by Dr. Lal did his assessment and Nolan had a period of coughing and throwing up in front of them all, which I was kind of happy about so they could see for themselves what he has been doing. It was decided to shut feeds off for the day, run fluids and let his belly rest while the course of antibiotics did its thing. (They started up the feeds again tonight, and so far so good.) We should know the results of the labs that were drawn by tomorrow, nevertheless, he has been on antibiotics IV for almost 48 hours, so we should have the infection under control if there is one present. Once we got Nolan calmed down, I gave him a bath and got him cleaned up because we had a couple visitors today!

Our first visitor was a good friend of mine that works for the same hospital system that I do. Krista Lazar is a physician assistant for cardiothoracic surgery, so I know she was anxious to see Mr. Nolan and check out CHP. We had a fun day chit-chatting, having lunch and spending time with Nolan. It was nice for me to have her check him out, too. Hearing her opinion definitely gives me peace of mind.

Our second visitor was a long-time friend, Heidi Poland Lawlor and her kids, Maddie and Robert. They happened to be in Pittsburgh because of family, and took the time out to come see us. It was so nice to see Heidi and how big her kids have gotten!

Later on in the day Nolan got an ultrasound around his neck because of the swelling in his face to make sure there was no clots from the biopsy. He also had an X-ray of his chest to check his lungs and heart. Both I have not heard about, so I am assuming no news is good news. Nolan had a visit from physical therapy and occupational therapy today and did well! He actually sat by himself for a few seconds, reached out for toys and could probably roll on a flat surface.

Tomorrow we should know the results of his biopsy and where we go from here. I know that he has to be tolerating his feeds better before we are discharged, so I am betting we will be here through this week. ALSO, tomorrow at 11 am I meet with our transplant coordinator. She will start training me on how to administer medications and teach me all I need to know about caring for a transplant recipient.

And so our new life begins.

#nhos
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Finally A Little Peace

Thankfully we had a much more relaxing day than the past two. Nolan ended up having a pretty difficult night. He was very agitated and the nurse ended up having a chest X-ray done, as well as labs pulled. The X-ray came back normal; they were checking for any changes because of the biopsy. The labs will take about 48 hours to come back, however there was growth, meaning that he does have an infection. One of our transplant physicians, Dr. Lal, finds it a little confusing because he has not presented any physical signs on an infection, such as a fever. Because of that they pulled labs again, then started him on preventative antibiotics. They will compare the two labs that were pulled to make sure that the first lab wasn't contaminated. We should know for sure tomorrow or Tuesday on the status of the infection.

If he does indeed have an infection, it could explain where some of his agitation is coming from. They have also stopped the bolus feeds for the meantime, and we are letting him rest. We are now back to continuous feeds, and he has been responding well. No throw ups or heaving, and he was actually able to sleep through the day. The past 48 hours he really has not slept much. I am hoping he has a restful night. I am debating sleeping in the room with him. It's hard to leave knowing that last night he had a rough one.

SO, here we are...another BUMP in the recovery process. I think we will get this figured out and back on track once again. :) I am just anticipating that the first year post transplant is going to be a rough one. Lots of learning, stress, ailments...but, we have great support and a network of heart families who we can get advice from. I think we'll do OK!

Tomorrow is Monday so we will get back on track with therapy, maybe start bolus feeds again depending how the night goes, echocardiograms, EKGs, etc. We should also get our final report from the biopsy, so I can give the full explanation what that all means.

Nolan and I have had a pretty nice day. He is currently playing under his gym. We had a visit from Faith and her mom and aunt. YES! Faith actually came over to our room. We are hoping to get the two together tomorrow and take some walks around the floor. We will make sure to get some amazing pictures of our heart warriors. We are hoping Lydia can join us, too. She received the gift of life a couple weeks before Nolan and Faith. She had a few set-backs, but is back on track and doing well. So far this year they have done five heart transplants here! So many lives have been changed here in a short period of time.

Well, I need to go switch some laundry over and grab a little something to eat. Nolan and I have been watching really corny love movies all day on TBS and I see that continuing the rest of the night!

Keep the prayers coming! We are ready to get this recovery process done so we can come home!

#nhos
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NEXT NOLAN EVENT: http://teamnolan.weebly.com/chili--chocolate.html

Belly Problems

No one likes belly problems. That has been what our day has consist of. There's a few reasons why Nolan is experiencing belly problems. First, the increased the dose of one of his anti-rejection medications, Cellcept, which is known to cause nausea/vomiting, amongst EVERY other side-effect. I just looked up the side effects, and read this list (it made me laugh). Like, what effect does it NOT have?

Other reasons, we have increased his bolus feeds during the day, and that is obviously causing him irritability. So, we are going to back down on it for a day, and then try to increase later in the week. You can tell he is also teething, so that always can cause some belly problems.

So, today was not great, in terms of irritability. Thank goodness they don't do the bolus feeds during the night, so he should have a more relaxing night. He hardly slept during the day, so I am sure he will have a very restful night. My mom and dad got into town this afternoon around 4. They are here to see Nolan because this coming week they are heading to Costa Rica to celebrate their birthdays (my dad turned 60 and my mom turns 60 in September). We are going to grab a late dinner tonight after Nolan falls asleep.

OH! Preliminary biopsy results came back positively. We will know the final results Monday, but his rejection status is between 0 and 1a. 0 is nothing, 1 a is slight rejection (which is normal), so that is good news! More on that Monday and I will explain further the status of rejection.

Some other good news, there is another patient on the heart transplant list who is also on a VAD. She is 17 years old (I believe) and she is receiving the gift of life tonight! I was so excited to hear about his and spoke to her dad in the elevator. He had the biggest smile on his face and I could just feel his relief. Lots of prayers to her and her donor family; and the team of surgeons tonight!

This is going to be a short post tonight! My parents are going to visit Faith and then we are going to head to dinner. I hope everyone is having a great weekend!

#nhos
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2 Weeks Since The Call

Well, another Thursday night comes to an end. Whenever I am home it's a late one for me because I spend the evening hanging with Riley and then packing for the weekend after she goes to bed. What is exciting is that I know that I only have a few of these late Thursday pack nights left! Tonight I even packed clothes for Nolan. It's going to be so weird to actually be able to put a onesie on him!

Just a quick update so I can get some sleep, plus I have a lot of pictures to share! Nolan had a busy day. This morning he had physical therapy and they actually brought him into the play room! They have him able to easily travel around the unit, which is so fun because now we can bring our stroller up and start walking around. After they did therapy in the playroom they spent some time in a sun room/seating area, which Nolan enjoyed, so I am sure we will spend more time there. After therapy Nolan had his second hair cut! I still haven't even cut Riley's hair. :)

They have started Nolan on bolus feedings and Matt says he seems to be handling it well. So promising! Occupational therapy came in and worked on eating, so we are definitely making progress. Tomorrow is Nolan's first biopsy. He will have it done around 8 am, and it's pretty much a simple procedure. During a biopsy, a small piece of heart muscle is removed for microscopic examination to detect rejection. The biopsy is performed through a vein located either in the right side of your neck or in your groin, using a bioptome, a long, thin tube with a tiny cutting edge. The entire procedure takes about 1/2 hour and will be performed by one of our transplant physicians. The biopsy results are available from 24 to 48 hours after the procedure. If they biopsy indicates rejection is present, the transplant team will immediately treat Nolan by changing his medication regimen. Rejection can recur at any time, and rejection is treatable. So, if there is sign of rejection it does not mean he will lose his heart.

After we find out the results from the biopsy, that is when we should know the timeline for when we will be discharged. Also we will know for sure if Nolan will be doing inpatient rehab or staying with us at the Ronald McDonald House. I am looking forward to next week and being able to actually spend time with Nolan. I will be able to hold him when I want, take walks around the floor, play in the playroom...slowly, but surely, we are getting there!

It's hard to believe that two weeks ago I was waiting to hear the announcement that Nolan's heart had arrived at the hospital. That seems like forever ago. Two weeks ago a brave family selflessly donated their child's heart and saved my son's life; I think about that baby throughout my entire day, every day. All of it is so hard to process, and I am not sure I am ready to. I am just forever grateful.

Tomorrow I will be in Pittsburgh around 6ish - I hope to get a post in...if anything, I will be sure to send some pictures! I hope everyone has a great Friday!

#nhos
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Getting Our Boy Back

According to Matt Nolan has made such an improvement the past 48 hours. He is back to his smiling, giggling self. Matt says it is so refreshing and exciting to see. Nolan is doing so well, that they are talking about discharging us to the Ronald McDonald house within the next week or two. This is SO hard to believe! One - we are going to have our son back, in our care; and Two - we are going to have our son back...IN OUR CARE! I haven't really been hands on with a baby in over 4 months! I am nervous! We have a lot to do before he is officially released, so I am sure we will feel more comfortable when they let us go.

On Friday Nolan has his first biopsy of his new heart to make certain that there's no rejection taking place. It is a same-day surgery procedure and should not cause him too much pain or stress. He will have about 8 to 9 biopsies within the first year. After that he will receive them quarterly, and as the years past, the biopsies will decrease. The results of the biopsy will determine how quickly we will be discharged. The transplant team have been suggesting inpatient rehab for Nolan instead of coming to the Ronald McDonald House. Matt is getting more information about that this week and we'll weigh our options.

Currently Nolan is still receiving his food through an NG tube. They continue to raise his feeds to get his belly used to normal feeds. They plan on starting bolus feeds during the night time, which is where they won't continually feed him, rather they will place a larger amount of food in his belly periodically through the day (like eating a bottle). So far everything has been going well. He had one throw up, but he is also on about 15 to 20 different medications, so who knows if that could be the culprit.

He met with OT and started practicing with food again, which Matt said went OK. Physical therapy went amazing - Matt said he would sit by himself for a few seconds. It's just amazing. Everyone is very happy with his progress, so we couldn't ask for anything more. I am so anxious to get back out there and HOLD MY SON!

I actually had an amazing day. Because of the weather, I got to spend the entire day with my favorite girl, Riley. We had such a fun day. We played inside all morning, I got a lot of stuff done around the house, started getting Nolan's room reorganized and Riley and I played in the snow. It was so nice to just be in our house, doing chores, getting our life back together because I now know we are all going to be together so soon. We got through the worst of it. Now we can see Nolan recover, grow and thrive. We can see Riley and Nolan actually get to be sister and brother. I remember thinking back when this all started, "will I ever be truly happy again?" I can't say that I am completely happy because I am still saddened by everything, and worried about what the future holds; but, it is a new happy. I am happy about the little things in life; I am guessing I appreciate them more. I was trying to get Riley down for a nap today and she leaned over, gave me a kiss and said, "I love you, Mommy." It melted my heart...and I thought how lucky I am to have her and I now feel confident that someday soon I will hear Nolan's little voice tell me the same thing. Two months ago, I would have never been able to imagine that.

I hope everyone had a safe, snowy Wednesday. I am going to have a crazy rest of the week trying to catch up with work and get ready for my upcoming week in Pittsburgh. I can't WAIT to not have to leave my office, or house...not have to pack...unless it's for an amazing vacation!

#nhos
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Chili & Chocolate

Home Sweet Home

I left Pittsburgh today around 11:30 am after Matt and I had a nice brunch together at a café across from the hospital. Typically leaving for home is the worst. Today I was excited. I was not driving home wondering if we would get the call this week, or worrying that Nolan would experience problems due to the VAD. We are on our way to getting our son back. He is going to feel better than he ever has in his life. I am starting to be able to envision him HOME. I have so much to do - it's like bring a baby home for the first time! Matt and I have not really cared for a baby in 4 months! I am nervous!

Nolan had a great night and looked wonderful this morning. I swear every hour he looks better. After I left, Nolan had his draining tubes removed. The only lines he now has is his PICC line and NG tube. He is now on full feeds, so they are going to talk with the transplant doctors and speech about his diet. Currently he is on continuous feeds where he gets 45 ml. an hour (1.5 oz.). What he will transition to next, I believe, is to receive bolus feeds. Bolus feeds is basically a larger amount of feeds and certain times of the day (like feeding a bottle) They will start this in really slow amounts to get his belly used to it. I was thinking about not even starting back on bottles, however, if he is able to use bottles I would rather do that then go home with an NG tube. Nevertheless, something we will be figuring out soon!

After Nolan had his draining tubes removed, he had a visit with physical therapy. Matt said he did amazing sitting and grabbing for his toys. We overall are so pleased when the progress he has made within the last two days. I can't wait to hear how the rest of his week is. I will head back to Pittsburgh on Friday, and my parent will be coming as well. Already looking forward to it!

ALL of this is so unreal. What has happened to us these past 4 months is really too much for me to think about right now. We have a lot to do and prepare for before Nolan gets home. We really do not know what care he will need after he is discharged, so Matt and I are trying to take everything day by day. I have flash backs to the day we stepped into the CICU and not knowing what the future held for Nolan, for Matt or myself. Fast forward 4 months later, I am so grateful - but at the same time still have a lot of sadness and worry. I still those moments of, "is this really our life? How did this happen?" But I am comforted knowing that Nolan has more support and believers than I could ever, EVER imagine. Nolan still has a LONG road ahead of him. We really can't thank everyone enough for all the donations, prayers, letters, notes, gifts...ALL of that has helped get Nolan to where he is today, and will continue to help him throughout his recovery process and life.

I hope to send pictures of Nolan tomorrow with that amazing smile! GOOD NIGHT!

#nhos
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HAPPY HEART AWARENESS MONTH!

A Message From Matt (Nolan's Dad)

A brief blog of a different nature on Super Bowl Sunday/Groundhog’s Day. Guest writing for Cori will be her husband Matt (currently referencing himself in the third person). While Cori sits fixated on the commercials, which are the only truly interesting part of this evening’s game, I’ll do my best to bring everyone up to speed on our family’s day. 

I began this morning feeling just a bit rough around the edges after a fantastic evening with many friends at the Nolan Heart of Steel charity golf outing. The event at Frosty Valley Country Club was well attended and incredibly fun. There were several lessons learned including the following:

1. When chipping onto a frozen green one need not fix a divot, rather he must find his ball which has surely ricocheted into the surrounding snow drift.
2. EMT’s become necessary when performing acts of charity such as polar plunges in a man’s thirties. Come to think of it EMTs might have been advisable in the preceding decade as well for many of the attendees including myself.
3.  Speedos on a man should never be worn even in ideal conditions for the sake of dignity. Leaps into a frozen pond in February incidentally are not ideal conditions.

All joking aside, the day and evening were wonderful. Much of the past four months have been spent in relative isolation in Children’s Hospital of Pittsburgh. I found my spirits raised to see so many old friends and to think that these people were a part of the home we were working to bring Nolan back to. Cori and I find ourselves without the proper words to thank so many people for caring about us. To see all of the efforts that were made for this event on our behalf reminds us of how truly blessed we are to have the friends we’ve made. I speak from the heart when I say that I’m a bit overwhelmed. I can’t thank the organizers and attendees of last night adequately. Of note I’d like to highlight Jon and Carrie Littlewood, Matt and Lindsey Gale, Pete and Steph Zenzel, and finally Steve and Andrea Lowe. There are many others as well, frankly more than we have space to reference here, but suffice it to say we are grateful to you all beyond words. We love you all, and are humbled by the genuine outpouring of support for Nolan and our family. 

While we were enjoying golf, plunging and dinner Cori and Nolan were moving. They left the CICU, hopefully for the final time, on Saturday afternoon. They moved into the Acute Care Unit where Nolan will complete his inpatient care. After an uneventful night Nolan has enjoyed his best day since arriving in Pittsburgh. He has showed continued improvements clinically on his echocardiogram and EKG. In purely non clinical news he has smiled several times for the first time since his transplant. He looks wonderful, and I

think that both Cori and I can begin to look at the small light at the end of the tunnel. Truly an encouraging day for Nolan, and a major step towards leaving CHP.

In summation a trial like this can wear you down. It can make you feel depressed, and it can shake the very foundations of your value system. All along the goal has been to bring Nolan home. We’ve never waivered in that, however yesterday was a reminder of what type of home we’re fighting to give him. We live in a wonderful place where we are lucky enough to be surrounded by some of the most amazing friends and family a person could hope for. I can’t wait to introduce our son to the many people who have supported him in his hour of need. Yesterday was incredible, and it brings to light the fact that we cannot be open enough about our true appreciation for all of you. It’s touching in a deeply personal way. Thank you all so much, as Nolan enters the home stretch of his recovery your support has been invaluable in keeping Cori and I strong by his side. You make us want to be better parents and friends. We admire you all tremendously.