Updates From Our Past Hospital Stay

Yikes! It is really hard to believe that it is November! I have been giving quick updates about Nolan on his Facebook page, Nolan - Heart of Steel, but I haven't really provided a nice, DETAILED update in awhile. Those that know me, I like a schedule and am a bit OCD - so I have carved out time each week to dedicate to writing this blog. I do enjoy keeping everyone up-to-date on Nolan...the good and the bad...but it also documents our journey so we can look back and explain everything to our heart warrior someday. I am sure he will be filled with questions when he gets older.

Anyway - THE LATEST.

Nolan was in the hospital at Williamsport Regional Medical Center last week from Wednesday evening until Saturday afternoon. It was nothing too major; he had been suffering from a cold the past three weeks, and I think around last Wednesday was the peak of this virus. He was having difficulties breathing, very rattly, fever, etc. We did NOT want to mess around given his history, so off the ED we went. Long story short, after many tests and blood cultures, they diagnosed him with viral bronchitis. Susquehanna Health's pediatric unit at Williamsport Regional Medical Center and Children's Hospital of Pittsburgh did an awesome job working together to make sure all the proper tests and treatments were being administered to Nolan. We are super grateful to have such a great support network.

We have continued to breathing treatments at home as needed, and Nolan is doing MUCH better. Not only that, he is eating like a champ (I think more than I do in a day!) Also yesterday he took 3 solid steps! I am pretty sure we are going to have a walker by the weekend. His vocabulary has really stepped up, as well. He is a talking machine (his own language, of course), constantly babbling and telling us stories. Milestone wise, he really seemed to develop significantly the past couple weeks. It is so great to see because I am always so nervous if he is going to have any deficiencies due to the strokes he had about a year ago.

Nolan was scheduled to have another biopsy this coming weekend, however due to his illness it has been rescheduled. We will most likely be back in Pittsburgh mid-December. Until then, we will visit our cardiologist at the Children's Heart Group of Hershey Medical Center and continue with lab work as needed. Our PT and OT are thrilled with his progress. OT is working less with him on eating because he has mastered that, and more on cognitive skills. We will find out down the road whether or not he will need any other specialty services.

So, that is really where we are at. The rest of the family is doing great. We are definitely into a routine and thankful for where we are at. I have been writing this blog for over a year now; I started trying to read what was going on a year ago...and I really can't. Those feelings and that life we had a year ago is still so hard to even think about. Life is truly a gift and so precious. Even we have to remind ourselves of that after all we have been through. I can honestly tell you that I feel like one of the luckiest people in the world to be surrounded by so many wonderful people - this is what I never want to take for granted.

More next week!

#nhos

UPDATE: I wrote this yesterday and since then Nolan has successfully walked about 10 - 15 steps! So close! :)

A Year Ago Today

One year ago Matt and I were sitting in the pediatric ICU at Penn State Hershey Children's Hospital surrounded by a new world. A world that a week or so later would actually become some-what normal...and oddly comfortable.

A year ago today, a Monday morning, I took Nolan to our primary care doctor. I look back on how lucky we are now because our doctor got him in first thing in the morning. A 7:30 am appointment. Little did I know that by 3:30 pm my then 5 1/2 month baby boy would be placed on Life Flight. Death was near him. I look back on it now and I KNOW we were in shock. How could this be? How can this happen to us? These doctors are wrong!

Nolan - December 2013

A year ago today, if things did not happen the way that they did, I am not sure Nolan would be with us. From our primary care doctor who sent us to the emergency room at Williamsport Regional Medical Center, to the physician in the emergency room, the residents and nurses, the nurses in the pediatric unit, the girl that did our echocardiogram that immediately saw a problem, to the cardiologist who quickly made the decision to get Nolan to an establishment that could help him...ALL of these people were who made the first step to saving Nolan's life. I am forever grateful to every single one of them.

A year ago today our lives changed forever. We became a "heart family." Our life of fearing a common cold turned into a life of hoping we would just make it through the night. It taught me that we all TRULY do not know what tomorrow will bring you. THIS CAN happen to us. And we were determined to do whatever we could in this entire world to save Nolan. Money...never thought once about it. My family...that is all the mattered.

Nolan and Riley playing at our cabin this summer.

A year ago today Matt and I found a new part of ourselves. We realized how much you would sacrifice for your children. I would have done and still would do anything to trade places with Nolan. I wish I could take on all of his past pain and any other challenges that he will face. The fear of watching your child struggle is something I would never wish on anyone.

A year ago today we became new people. And I do believe for the better. I have high hopes for Nolan's future. All because of amazing people at Susquehanna Health, Penn State Hershey Children's Hospital and, of course, Children's Hospital of Pittsburgh. ALL of these establishments still care for Nolan both physically and emotionally. We are BEYOND blessed to be where we are today. I would have never guessed. I wish I could write more updates and post more pictures, but...HAPPILY...we are so busy being what we prayed to be again...a family. Days aren't always easy. We are still acclimating. We are still fearful at times. And in those times I do have to reflect to where we have been and where we are now.

A year ago today I never knew so many people could have love for one person. But now I see so many people within our community and Facebook that care DEEPLY for our little man. It's powerful and touching. I really hope someday he understands that he changed so many for the better. And because of him we have met so many people, rekindled old friendships, started new ones and really solidified where we want HOME to be.

A million thanks to all of you out there for being by our side and continue to be through our adventures. I will try to post when I can and DEFINITELY will try to be better with at least getting more pictures of Nolan up. He continues to do amazing. He is down to 1 - 2 feeds a day through his feeding tube, enjoys eating and is doing great at drinking water. He can walk while pushing his toy walker and I think he can say DOG. It is amazing to watch him grow and learn daily, and we are surrounded by an amazing team of nurses, OT and PT.

More to come on this adventure - I hope all positive. You are all very important to us. Much love.

#nhos

Summer's End

I know - it's been forever! I do not even know where to begin. Truly...no news is good news around here. We are on a pretty normal weekly routine and our summer weekends were spent out at our family cabin. Needless to say it was a fantastic summer. It is hard to believe September is here. This month sticks out to us like a sore thumb. Almost a year ago our lives changed forever. For some reason my anxiety level has heightened even more with the start of this month and flashbacks are present again...especially the beginning days of our journey. As much as I really do not like to dwell on the past, it definitely haunts me from time to time. I never want us to go back there. I fear it everyday.

BUT, then I bring myself to reality. Nolan is doing amazing. I mean, if he didn't have that NG tube in his nose, I seriously would never have guessed this little man has had a heart transplant. He is cruising...really ready to walk any time now, his eating is getting MUCH better and he is drinking water like a champ. He had a routine cardiology appointment at Hershey yesterday and Dr. Dispenza continues to be very happy with how everything looks. Our next appointment is on Monday with neurology at Hershey to discuss his past strokes and the keppra he is on (which is a preventative anti-seizure med). Hopefully we can begin to wean this drug off.

Gosh, so many other things have happened, I am really not sure how to catch up. I think it may take me a bit, but I do plan on providing a little update weekly. Currently Riley is doing tumbling and t-ball, and Nolan is busy at home with our awesome nurses, PT and OT quickly catching up on his milestones. We will be getting him in soon to get his flu shot and whatever other immunizations he is allowed to receive. Because of Nolan's immunosuppression due to the anti-rejection medication he is on, he is not allowed to receive live-virus vaccines, such as measles, mumps and rubella. This also means if Nolan were exposed to any of those viruses that he can not be vaccinated for, it puts him in a serious risk of major illness, even death. (Getting on my soap box...) Take time to learn more about the importance of vaccinations for your family, friends...and kids like Nolan! http://www2.aap.org/immunization/families/faq/whyimmunize.pdf

Anyway, Matt and I are doing well, also. We are both trying to get back into a workout routine, keep busy with work and even getting out with friends. We are very fortune to have such a supportive family that allows us to get out and have some US time! We are even planning a vacation ALONE in February! Yikes!

LAST, but not least...Nolan's Heart of Steel is teaming up with Ellie's Heart Foundation and Hayden's Heart to host a blood drive on Saturday, October 18 from 10 am - 2 pm. When planning this we thought we could all be in town, but unfortunately that is the weekend of Nolan's next biopsy! Anyway, I hope those locally can make it to the Genetti Hotel and contribute to this amazing cause. I can't even tell you how many blood transfusions Nolan received while at CHP, but I know that the American Red Cross is ALWAYS desperately needing blood donors. Click HERE to sign up to donate!

Well, I am off to bed. I will post some more pictures on Facebook this week!

#nhos

What's The Latest

It got later than I anticipated, but here is the latest from our recent trip to Pittsburgh!

We got in Thursday night and stayed the weekend with our great friends, Rob and Alisa Zisman. Nolan had to be at same day surgery at 6 am, so it was an early wake up call for us Friday morning. Once he gets into the procedure, it is pretty quick. We actually spent most of the time speaking to one of our transplant doctors about Nolan's medications, genetic testing and what the next 6 months will look like. This was also Dr. Lal's (transplant doctor) last weekend at CHP, as he is heading west to Utah. It bums us out because we really clicked with him and we all have grown close; and I know he enjoyed watching Nolan progress so well. There are many doctors we really enjoy at CHP, but we will miss Dr. Lal.

Once Nolan got out from the biopsy we were called back to the recovery area. He was super groggy, but otherwise was doing well. We ended up leaving the hospital close to 1 pm and spent the rest of the day relaxing at Rob and Alisa's. They have a son, Enzo, around Nolan's age...so it was fun to see them playing with one another. On Saturday morning we got a call from Dr. Lal letting us know that Nolan's biopsy came back with zero rejection - which is the best we have ever had! We were so thrilled and relieved! The rest of the weekend we really just relaxed, went out to eat, went for a walk/picnic in Frick Park...it was exactly what we were looking to do. So, again - THANKS Rob and Alisa!

Monday morning we had an appointment with our gastroenterology at 8 am to discuss feedings and his liver enzymes. His liver count came back normal, which is great! But now the question is why his counts were elevated in the first place. Most important, Nolan needs to be on a prophylactic antibiotic to protect him from certain ailments, most notably a type of pneumonia that could be fatal. So, he will start back on Bactrim this week - and if his liver enzyme elevate, we'll now know it's the Bactrim. We also started him on Pedia-sure instead of formula. He is now down to 3 bolus feeds a day through his NG tube, as well as relying on oral feeds for his caloric intake. So, we are making progress!

ALL IN ALL - it was a great weekend. It was everything we wanted to hear...and MORE! It has been a busy week...actually, July has been pretty crazy! This weekend we are heading to a wedding in the Finger Lakes. I am actually looking forward to a get-away with Matt and taking some time to ourselves. BUT, I also miss our kids, so I am looking forward to our life slowing down a bit.

Thank you all for the continued support and prayers. We are beyond blessed on how well everything has gone thus far and hope things continue to move in the right direction!

Off to bed. GOOD NIGHT!

#nhos

A Busy July

So far our month of July has been crazy, busy! But all in a good way. This past weekend we had our annual family party at our cabin. Nolan made a small appearance on Saturday, but was otherwise with his Meena and Grandfather McLaughlin throughout the weekend (along with Riley). We are still not having him around large crowds of people, and it is good that he gets used to spending some time with his grandparents! Over the weekend his crawling skills when from stumbley to a full out crawl. He is a quick one and even quicker to pull himself up on anything he can. It is so amazing to see, but we are now having flashbacks on how it is dealing with toddlers. The baby proofing has begun again in the McLaughlin household.

This coming Friday is biopsy day. At first I wasn't really nervous about it, but now I am thinking more about it and I am. He is doing so well, I just hate the thought of having to go through the sedation and being intubated. BUT, it is a same-day surgery and he has done well in the past...I am just anxious to get it over with. While we are in Pittsburgh we also have an appointment with GI which we will discuss his feedings. He has been eating more food, so I would imagine we will (hopefully) remove the ailmentum formula and use something more like pedia-sure so we know he is getting vitamins. The eating has been going amazing. He is chewing and swallowing, drinking water a little...and not gagging (actually ENJOYING it). So, I think we are on our way. Which is a good thing because the more mobile he is the harder it is becoming to keeping him in one place during a feeding!

Well, I am off to bed. We leave for Pittsburgh after work tomorrow. I will update through the weekend!

#nhos

Summer Sundays

It is weird to me being able to sit outside on the deck at my family cabin at the picnic table on a computer. If you would have ever told me that as a kid I would have never believed you! But, here I am. It's 4:00. Happy Hour. I am sipping on a cold adult beverage watching Nolan rock in the swing while he naps...and yes, he is totally TOO big for the swing, but he loves it. It groans as it rocks back and forth...but it's still swinging! Riley and Matt are down in the creek playing...I can hear them chatting and laughing; it is a sweet father/daughter moment. SO - I guess I am trying to say LIFE IS GOOD!

We are getting into our new life, one we are comfortable with. Hospital days are a distant memory, but still haunt us. We talk about the good and the bad. We miss many of those that cared for us so dearly at CHP, but we know we get to have our occasional visits around biopsy times.We are almost 6 months post transplant! I can see now that I had a lot of coping that needed to be done from that time until now. So many adjustments...a lot of firsts...fears. But, I am to a point where I know he is healthy and we now need to focus on OUR life as a family. There's no doubts that we are going to have our scary moments with Nolan - and we are realistic, but it is time we go back to living...with our antibacterial hand sanitizer in hand and Clorox wipes, of course. :)

SO - to date Nolan is now starting to sip water without gagging...and eating food. Mashed potatoes, rice crisps, veggie sticks, bananas...to name a few. Physically he is SO ready to walk. He is crawling (not quickly or to the best form, but he is definitely on the move) and this past weekend he started to cruise a little. Matt and I definitely get a little emotional seeing this because there were MANY, MANY days where we could not even imagine him sitting unsupported let alone WALKING! It is such a blessing. There's no other way I can explain it.

Next weekend is our family's annual party out here at our family cabin. Nolan and Riley will spend the weekend with Meena and Grandfather McLaughlin because it is such a large crowed and a time for us to let loose with our friends and family. We are SO, SO excited to see everyone. Matt and I seriously have had this on our brain as day as a milestone...we would say, by Everfest we KNOW we'll be home. And here we are!

I do hope you all had an amazing and safe holiday weekend with your family and friends. I am still so amazed by all the support we continue to receive. We could not have made it this far without all of you!

Much love to you all.

#nhos

FUN IN THE SUN FRIDAY!

What a beautiful day it was in PA. I am glad we had the sun because we had a long night with Nolan. We didn't even get him down until past 11:30 pm and then he got up again about an hour or so later screaming. He was also having some congestion and coughing, which I still think has to do with allergies. I am thankful for Matt because he ended up sleeping downstairs with Nolan while he was in his swing.

So, what was wrong with Nolan? I ended up taking him to our primary care doctor just to make sure everything was OK. We decided to start doing some albuterol treatments through the day, and our physician assistance noticed that his gums were really swollen. With that said, we are pretty sure he was cutting teeth last night, which caused his crankiness. If his coughing continues we plan on contacting our PA and she will prescribe an antihistamine or him.

Our nurse said that Nolan had a good rest of the day. He took a 3 hour nap...most likely because of the long night. We had a nice night hanging out at home, ate dinner outside and Riley played with friends. This weekend we plan on spending in town, which I look forward to getting stuff done around the house.

OH - labs came back and his liver enzymes went down again, however his FK (prograf) level is low so we had to increase his prograf .3 ml.

So, we are hoping or a quiet night! Nolan, my dad and a few friends of mine are going to run a 5K in the morning (OF COURSE, NOLAN BEING PUSHED!)

Happy weekend!

#nhos

We're Back!

I guess like they say - no news is good news! And that rings true here. Nolan has had a great few weeks and we are so thankful for that. I do want to apologize for not providing updates recently. I feel like the past couple weeks have been super busy and going so quick! It is also hard to update daily because there's not really a lot to say. Which is a good thing, right? I do enjoying writing and sharing my experience with everyone who has been following and rooting for us these past ALMOST 9 months. Maybe I just needed some time off. :)

A quick Nolan update. These past few weeks he has really excelled physically and with his eating. He is on the cusp of crawling, trying to pull himself up (and succeeds at times), loves to stand and just wants to GO! So it all begins...the soon-to-be toddler getting into everything. He enjoys tasting and trying new foods. He struggles with the swallowing, but every week there is improvement. I think it will fully just start to click at some point. I really have to give so much credit to our occupational therapist and nurse. They work with him consistently everyday and I am so thankful for their support. Our PT is wonderful as well. He changes daily and is starting to meet those fun milestones we have prayed to see him do. I can't tell you how many times Matt has said to me, "I remember those days looking at him and not even being able to imagine him sitting on his own...or even bringing something to his mouth." It's the little things that mean the world. NOW, don't get me wrong...I am only human and do get the parental frustrations with their toddler. Currently all he wants to do is stand while being supported (by a person) or be held. So, it is tiresome, nevertheless, a blessing!

Next week Nolan has a cardiology appointment with Dr. Dispenza in Hershey. We had lab work done today, so we are anxious to hear how his liver enzymes are doing. He has had some congestion at night and in the morning - but I am suspecting it to be allergies. I may be seeing our primary care doctor tomorrow just to get his opinion and then have them prescribe the appropriate allergy medicine that will not interfere with any of his current medications. He currently is only on 3 medicines. THAT'S RIGHT! THREE! Prograf (anti-rejection med), Keppra (anti-seizure med) and Nystatin (antibiotic that goes in his mouth to prevent thrush from his feeding tube). Isn't that amazing? When we got out of the hospital and went into the Ronald McDonald House we were on medications every two hours. Now here we are. He is on four bolus feeds a day and no overnight feeds. Slowly as he eats more we should start to decrease the amount of formula he is taking in through his feeding tube. We should be making some changes come mid-July after our appointment with GI.

This has been a pretty crazy week. Monday I was TOTALLY surprised by an unexpected visitor. Ashley, Oliver's mom, totally shocked me by showing up on my back porch. We had a great evening catching up, reliving some sad times...some fun times, talked about Ollie...the future. AND, just girl talk! It was such a fun night, I wish we didn't live so far apart. Despite Oliver's passing, Ashley seems to be doing well. She is such an inspiration to me...so realistic, so in love with her son and is simply a true person. I admire her strength, compassion and outlook on life. I think she just reminded me of what is truly important in life. (My four favorite F's!) Family, friends, faith and FUN! Ashley also left me with an amazing gift. She gave me a hand-blown glass flower that has a little of Oliver's ashes blown into it. It is BEAUTIFUL and so amazing that she left us with a piece of Oliver to watch over Nolan forever. Such a blessing. Thank you Ashley and Trevor! (We missed you Monday!)

WELL, I could go on however I have a mission to wake up early and go running before work. I am hoping to run a 1/2 marathon in August. Also, I have to highlight that today I gave back by donating blood! Every little bit counts!

Thank you all for your continued support, love and prayers!

#nhos

The Latest

(Post started earlier this evening!!) I am taking advantage of some nice, quiet time and going to try to provide a quick update on our heart warrior!

Matt and Riley are outside in the yard mulching while Nolan and I are inside relaxing (Nolan is currently on a feed). I am lucky to have an amazing husband who turned our backyard into a small paradise. We had some wonderful friends help build an awesome fence around our yard so that our dog and kids can run free without us panicking about street traffic or wandering off. Now Riley can play with as she pleases - and she is currently doing so with the neighbor kids. It's fun to watch her grow. She is truly turning into a little girl! I am so excited because tomorrow she starts soccer at the EL YMCA! Like mother, like daughter!

And then there is Nolan. What an inspirational little guy he is. He has had a great two weeks. I think my only cause of concern would be that he gets pretty congested in the middle of the night, but I think that may be allergies and post nasal drip. Something I will have to ask our amazing transplant coordinator (you reading this, Alice??) :) But all in all, he is the happiest little guy I have ever seen! Plays all day and sleeps soundly all night. (For now!!)

I guess I will go from TOP to BOTTOM.

BRAIN. Neurologically speaking Nolan is doing great. He is still on anti-seizure medications because he does have trauma to his brain from his strokes. Typically people are put on anti-seizure meds as a preventative measure if there's ever trauma to the brain. That goes for even major concussions. In September we have an appointment scheduled with a neurologist at Hershey Medical Center so we can establish a relationship closer to home and make a plan to wean him off of the anti-seizure med.

HEART. His heart looks great. Pressures are improving and his rejection level is 1a, which is where we have been from the start. And that is good! Our next cardiology appointment is June 26 at Hershey Medical Center with Dr. Dizpenza, followed by his next biopsy at CHP which is July 18.

LIVER. His liver enzymes dropped dramatically, however they aren't "normal." Maybe boarder line normal, but not quite there. With that said, Nolan is currently still only on 1 anti-rejection med because they want to see if his liver numbers continue to trend down.

GI/FEEDS/EATING. Nolan hardly throws up at all anymore. His bolus feeds are up to 205 ml/hr, 4 times a day...then a very small continuous feed through the night. As we increase his bolus feeds his night feeds will decrease, so very soon he will be off of night feeds. We have OT (occupational therapy) come to our house 2 - 3 times a week to work with his oral feeds. Along with that our nurse(s) work with him a few times daily. I have also been working with him once a night. He enjoys veggie stick, cheesy puffs, sweet potatoes, noodles and Vanilla Wafers. It is so awesome to actually see him engaged and wanting to eat. It gives me hope that we will get rid of the NG tube sooner rather than later.

PHYSICALLY. Nolan is teething like crazy. I think we have about 6+ teeth in. There's hardly a time you see him without a teething toy. He enjoys his bouncer and any other contraption we have that allows him to be in the standing position. He is sitting on his own and can even lower himself to the ground from the sitting position. I think crawling is in the near future as he clearly can get from point A to point B by army crawling. I can see he is starting to try and figure out how to pull himself to standing. SO, I think the crib will be lowered soon! We have PT come to our house once a week for an hour. They are very happy with his progress. We work on clapping, patty cake and playing "SOOOOO big!" He is very CHATTY...and I have to say, he is a mama's boy! :)

In the grand scheme of it all, life is good. It is tough from time to time. I do think we are coping with the WHOLE situation and try to maintain living day to day and not looking too far into the future. Not that we think anything bad is going to happen, but simply because there's still a long road ahead of us. We need to focus on today and look at the big picture...where we started, and where we are today. It is truly amazing...we are truly thankful and blessed for all the love and support we have gotten and continue to receive - and to have him here with us!

#nhos

Happy Belated Memorial Day!

Just a quick update on how our Nolan is doing.

On Sunday morning Matt and I joined our little ones at the Cabin. Nolan had a good night with my parents...he was a little congested, but as the weekend went by he sounded much better. So, the antibiotic is doing its job!

Sunday we had a fun day. All the families on our road at the Cabin got together for an Annual Memorial Day Parade...all the kids on the lane walk in the parade; so we road on the back of our golf cart (my mom, dad, Riley and I); it was so cute and there were so many families and kids involved! After the parade there were games for the kids and the adults, then a picnic with a band, food, drinks...AND the weather was just amazing. So, it was a nice day. We actually took Nolan over to the picnic and watched from afar. He really has not been around so much action, so he was totally interested in the music and people watching.

Monday was just as gorgeous so my dad, Matt and cousins worked on a huge play-set they are building for the kids and I actually got to get out and kayak with some of my good friends. It was my first time kayaking EVER! I haven't had a moment of peace like that in so long. I loved it...and think Matt and I are going to try and do it more often this summer.

Nolan just loves the cabin. He love the outdoors, watching Ben and Riley run around and being in another environment other than our house. I am a bit crazy, stocking the area with ample supplies of hand sanitizer and Clorox wipes. I am pretty sure the cabin has never been cleaner! I am so thankful we have this place or else Matt and I may have gone totally crazy being in our house all summer.

The latest with Nolan. He seems to continue improvement from the virus. I am pretty sure Riley had/has whatever Nolan does, and both of them seem to be on the mend. Physically Nolan is doing amazing. He can definitely army crawl from one side of the room to the next. I think we may see him crawl pretty soon. More and more we have been working on standing and walking with assistance. He is getting used to the walking motion. Tonight our OT came over to work with me on Nolan's oral feeds. We have a long way to go, however he didn't do too bad tonight. He did not gag at all and was actually bringing some food to his mouth. So, I have a new plan and feel more comfortable working with him.

We should hear more tomorrow from our transplant team on our next steps with Nolan. We are still in the process of adjusting medicines and need to get a neurology appointment at Hershey soon to discuss his anti-seizure medicine and whether or not it is necessary. So, more on all of that soon. His next biopsy is July 18, so I am HOPING that is our next trip to Pittsburgh. We will also meet with GI to discuss his feedings.

I hope everyone had a great start to a short week!

#nhos

Never A Dull Moment

Well, not the start to a holiday weekend that we expected.

Yesterday Matt and I started our weekend off by having happy hour with some friends. Just a short time after we got home it was clear that Nolan was not feeling well. There's one thing for sure - when Nolan is not feeling well you can tell. He was lethargic, cranky, feverish and just wanted to be held. He also threw up several times. Matt called the on-call cardiologist at Children's and since it wasn't necessarily "life threatening," they said if we felt there was something actually going on it would be best if Nolan were to come there. So, off Matt and Nolan went around 6:30 last night. They got to Pittsburgh around 10:30 and Nolan was admitted. They ran some tests and right off believed that Nolan has an ear infection. He has had a low grade fever on and off all week - a lot that we attributed to teething. So right away they started him on some antibiotics.

So, Matt and Nolan had a long night. Matt gave me the play by play throughout the night. Nolan's liver enzymes are still trending on the high side, which has caused concern for the transplant doctors and our GI doctor. Over this past week we discussed this with the team. Our plan of action is to get an appointment with neurology ASAP to discuss decreasing Nolan from the Keppra, medicine that prevents seizures. Once that was weaned and if his liver enzymes were still high, we then would switch his anti-rejection medicine, which currently is prograf. And if THAT didn't work we would then have to get a liver biopsy to get a further understanding as to what was going on.

Fast forward to this morning; Nolan looks much better. He is his happy self, despite a little sleep deprived. Nolan does have an ear infection and a little viral infection. Like our transplant coordinator and doctors say, Nolan will get sick. And the first time will be scary. Thankfully it is not anything to serious and we caught it very early. When Nolan isn't feeling good, you know. I know it seems crazy to run straight to Pittsburgh, but they know him best. It is amazing how far you will travel to receive good healthcare. Since they specialize in children with transplants, it is just where we feel most comfortable and confident.

SO, as we speak, Nolan and Matt are on their way home! Today Matt and I were to attend a wedding of some dear friends of ours, Pat Moriarity and Keri Matty...well, I THINK we may make it to the reception. YAY! We have been looking forward to this day. My parents are looking forward to watching Nolan and Riley tonight...then the rest of the weekend we are going spend at the cabin. So, I can't wait to see Matt and my little man. I have missed them both so much!

WELL - that is the latest in the McLaughlin world! NEVER A DULL MOMENT! Life is ALWAYS keeping us on our toes. We are looking forward to see some great friends tonight and spend the rest of our weekend with family. I will send an update tomorrow at the cabin!

#nhos

A Good Weekend

And so another week begins!

The rest of our week in Pittsburgh was busy, but successful! Thursday we had an early morning appointment with our transplant doctors and transplant coordinator. During this appointment we had an EKG done, as well as an echocardiogram. Everything looked great and both Dr. West and Alice, our coordinator, were happy with how Nolan looked. Probably our number one concern, these crazy liver enzymes. They are still high, but steady. Our GI doctor at CHP has been great to work with. He is in touch with us on a weekly basis discussing Nolan's lab results, other lab panels he has ordered and asks if we have any thoughts or suggestions. He still thinks that Nolan's high liver enzymes are most likely due to medications, however he has ruled out any metabolic or genetic disorder...so that is good. Tuesdays is when all the people involved in cardiac transplant get together and discuss all cases, so I think by tomorrow we may know if any medication changes will be made due to the liver enzymes. As for now, Nolan seems to be doing great (better than ever), so we all know he is feeling good.

Back to our week. Friday we had to be at CHP by 6 am for the biopsy. Nolan went in to his procedure about 7:45 am, and the cath takes about an hour. Once he was sent to recovery, Dr. Miller let me know that all of his pressures look good and she didn't suspect for their to be any issues, but that was up to the pathology reports. We hung out with Nolan in recovery until about 11:30 am...then we got in the car and headed back east for Williamsport! We knew that if there was rejection we would have to turn around and go back to CHP, but I think both Matt and I knew that everything was OK...so we took a chance! On our way home we got his results, and his status was 1a, which is good! He has also been removed from two more medications...so currently he is only on 4 medications! When we were at the Ronald McDonald House he was probably on about 15+! So, life is getting easier!

Before we left CHP, we stopped to see some of our nurses and I also visited with a family I got to know before we left Children's. Sarah's daughter, Elsie, received a heart a little over a week ago. She is 6 years old and doing amazing! I wanted her to meet Nolan and to see how they were all doing. It was nice to see all of them smiling! ALSO - it is great to see all of our amazing nurses at CHP. We miss them all dearly!

When we got back to Muncy we relaxed with my mom and dad, and got reunited with our baby girl. Riley had a great time in Florida...she got to experience her first plane ride, her first roller coaster ride, her first log flume ride...and many other firsts, so I am a little sad that Matt and I missed those moments. I am so grateful that my parents took her to see my Nanny (mom's mom) and visit Florida! Matt and I are very fortunate to have amazing parents that are willing to help us out and enjoy hanging with our kids!

Saturday into Sunday we decided to spend at the Cabin. It was cold, but nice to get out there and relax. Being out there takes away the stresses of life. I look forward to our summer. Saturday night we got to hang with the Uzupis' (Steve and Betty) and Christs (Randy, Ashley and Colt); we had a good fire that all the kids enjoyed...and the adults! Sunday we had a nice day with Dick, Carol and Randy Everett and Matt's parents, so all around a great weekend. We are lucky to be surrounded by such amazing people in our life!

What does the rest of the week hold? Tomorrow I believe Nolan has OT. Our nurses continue to be AMAZING! Nolan is doing great physically. He can get on all fours and is rocking back and forth. I bet he is crawling within the next two weeks. All around he just looks amazing. I can't believe how far we have come.

I hope everyone had a great weekend and a marvelous Monday! We are still slowly acclimating to our new life. I have a list a mile long of things to do...send thank yous, hang pictures in Nolan's room, clean Riley's playroom, etc. I want to express to you all how much you all and our community means to us. I think about all the support we have received and continue to receive daily. We truly feel SO extremely lucky to be from Muncy...Lycoming County...Williamsport area. VERY proud.

PS: don't forget to VOTE tomorrow :)

#nhos

Back in the 'Burgh

The McLaughlins had an early morning (well, Matt, myself and Nolan - Riley was sleeping in soundly on vacation in Florida...jealous!) I got up at 4 am and we were on the road by 6 am. We wanted to get to Pittsburgh today by 11 am so I could attend Oliver's memorial service. It was a great drive - actually kind of peaceful. Matt and I are so used to making this drive in the winter months, so it was nice to see spring IN BLOOM and watch the morning wake-up. Nolan did great on the drive out - very chatty, so we tried the best we could to keep him busy.

We got into Carnegie, PA where Oliver's service was held. It was so great to see Trevor and Ashley - finally! They both looked amazing and so happy to see everyone in attendance. When Ashley and Trevor were planning how to honor their son, they asked Matt or I to speak at the service. I was completely taken back...and a little terrified! However, how can I say no. To be able to stand in front of Ashley's friends and family and speak about their courage and love for Oliver and each other, not to mention be apart of this memorable day, I am honored. The service was perfect. The pastor spoke so passionately...and even shed some tears, and it was a time not to be sadden by Oliver's passing, but celebrate his life! He is a teacher, an inspiration, a fighter, a son, a grandson who will continue to help friends and family get through the day and live life with purpose. I know the Halligans and McLaughlins will continue our friendship for a lifetime, and I look forward to making many memories together. Thank you Oliver, Ashley and Trevor for giving us your example of strength and teaching us all how to be Olliestrong.

Tomorrow we have our clinic day with the transplant doctors. No labs though - yay! So we will head over to CHP around 7:45 am. We are staying at a hotel, so it is kind of relaxing! Nolan is teething like crazy (almost 7 teeth in...4 out, 3 poking out - ouch!); I hope we don't bug the neighbors too much!

Tonight we went out to dinner at a restaurant in the same complex at our hotel called Social. We sat outside away from people so Nolan could rest in his stroller and Matt and I could enjoy some dinner and beverages.Weather was great, but we are exhausted. Matt and I are hoping Nolan feels the same way soon.

More tomorrow!

#nhos

Happy Belated Mother's Day

Fitos, I hope all the mothers out there had a nice Mother's Day. Coincidentally this year Mother's Day fell on my birthday. Thanks to my husband, I got to spend Friday night out with some girlfriends, one being Abby Fitzgerald, one of my best friends from high school. This was the first time she has seen Nolan since early September, so I know it was nice to reunite. Abby has a son, Liam, just about the same age as Nolan (a few weeks apart). Our daughters are also exactly one week apart! SO, needless to say...I had a good night.

Saturday and yesterday, Matt, my dad, his dad, KC Shaner and Fred Springman built our new fence. We have the first long section of the yard done and it looks amazing. Between this and our garage, these are our main spring projects...we can't wait! Our dog will have his yard back and Riley can run free without us having fear that she is going to leave the yard. I have slowly been getting things together and organized around the house. It takes a lot of time catching up after not being home for six months! Matt and I were really close to moving about a year ago and the more we get some stuff done around here, the less I think I am ready! So many memories here and I feel we need to make some GOOD memories before saying good-bye. Maybe we'll stay here for another year or so. :)

NOLAN. He is doing great. His liver enzymes are still high. We had our routine Monday blood draw this morning, and additional panels were ordered to do further testing into finding out what's causing the levels to stay elevated. Nolan does not appear to be feeling bad, he is tolerating his bolus feeds 4 times a day at 170 ml/hr, and then a very small continuous feed from 9:30 pm - 7:30 am. Our goal is for him to get to 180 ml/hr which we will start tomorrow. He hardly throws up (today only once), so overall we are happy with this.

Our nurses are amazing. They all truly love our little guy and we have such a great bond with them. We feel SO lucky to have Bayada Pediatrics in our area! During the day he has been receiving one hour of PT a week and 90 minutes of OT a week (which is broken up to 30 minutes, 3 times a week). The nurses work on both therapies throughout the day and he has been doing well with the oral feeds. Both the therapists are great. I think he will be crawling/walking by the end of the summer, if not sooner.

Wednesday we leave for Pittsburgh. Nolan has a day of appointments on Thursday, then Friday is his biopsy. It is always nerve wracking to go in for a biopsy of his heart, but he seems to be doing so well, we do not anticipate any rejection going on. I am anxious to go...I have not been back to the hospital since we left, so I am just preparing myself for "hospital mode." (whatever that means) I look forward to seeing some people at CHP, most importantly giving Ashley and Trevor Halligan big hugs (Oliver's parents); please keep them in your prayers tonight as I know they are spending their last day with Oliver. They have had family and friends travel in from all over to support them. They are all so loved. I hope they all feel it.

That is the latest. I will definitely be keeping updates while we are back in Pittsburgh and will try my hardest to every day. Tonight's a less busy night for us - Riley took a trip with my dad down to Florida to visit my mom, who is helping out her mom as she transitions into assisted living. She had her first trip on a plane with "her pop." I am so jealous! And I miss her SO much! I know she is going to have a blast...and I know it's good for my Nanny to see Riley. She brings a smile to your face.

Everyone keep #olliestrong tonight.

#nhos

Ollie Strong

It has been awhile, and I apologize for that. I have found it hard to write about what is going on with our lives when good friends of ours are going through such despair having to make the decision to let their son go.

Oliver Robert Halligan was born on November 11, 2013 at 11:11am. He was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR) at 18 hours old. As most of you know, Ollie has had quite the roller coaster during these almost 6 months of life. Just a few weeks ago Ollie crashed and they were able to revive him. After that, he continued to have other issues arise, so various tests were being completed.

Last Thursday Oliver had a bone marrow biopsy. On Friday the team got the results and wanted to have a care conference with Ashley and Trevor, Ollie's mom and dad. So they met with Oliver's cardiologist, CT surgery, renal and the hematologist. They discovered that the narrowing in Oliver's left pulmonary vein was longer than they had originally thought. Because of this a heart catheter that they had previous planned to perform wouldn't help and there was nothing they could do for the narrowing and they feared he would not make it through the procedure. The bone marrow biopsy showed that Oliver has Hemophagocytic Lymphohistiocytosis (HLH). HLH is an extremely rare blood disorder where the white blood cells attack healthy blood cells. The treatment for HLH is either chemotherapy (which he probably would not survive through), a bone marrow transplant (which he's not eligible for because of all of his other issues) or steroids (which wouldn't be good because he has an infection in his PD dialysis catheter. Therefore the steroids would make the infection worse and would cause Oliver pain). HLH (in kids with just HLH) has a 70% mortality rate. Because of this and all the other complex issue, Trevor and Ashley had to make a decision that no parent should ever go through. They have decided on May 12 they will free Ollie of this life of tubes, tests, pokes and let him free.

I am really at a loss of words about all of it. I can't imagine what Trev and Ashley are going through, but I have been in contact with her everyday to make sure they are OK. I feel comforted knowing that Ollie can be released from the world of tests, procedures, radiation, etc. He will be free and guide his parents, family members and friends through their lives. This is just another reminder of how precious life is. How life isn't fair. How when we are given a situation like this you try the best you can to find the positives in it just to survive a day. Trevor and Ashley will continue to live their life for Ollie, just as they would if he were physically with them. I pray Ollie helps guide his parents back to a happy place. And I know Oliver will never leave their sides, or those who they care about.

I will update more tomorrow. Please take time to say a prayer for Oliver, Trevor and Ashley...and their family. May they find some peace after this storm calms.

The McLaughlins are always here for you, Halligans!

#olliestrong

A Trip to Harrisburg

Ahhh - is it already Thursday night? Weeks are flying, but in a good way. Today marks the first day of May. This month a year ago is around the time when crazy stuff stated to happen with Nolan. First was the apnea, which they later diagnosed as apnea of prematurity. Whether or not all of this is correlated to the dilated cardiomyopathy remains unclear, but needless to say, we never knew a year ago that we would be faced with a lifetime of  medical needs for our son.

Nolan and his dad had another adventure to Harrisburg today to meet with our awesome pediatric cardiologist from Hershey Medical Center. Dr. Dizpenza is a very thorough physician, one that I actually did not like while we were inpatient in the PICU prior to being sent to CHP. Why? WELL - because he diagnosed Nolan right off and basically told us around day 2 at Hershey Medical Center that he suspected Nolan would be transferred and most likely a candidate for a heart transplant. I remember talking to him in those very beginning days of our journey trying to make him say the words I wanted to hear...but he wouldn't, therefore I was just not a FAN of him. WELL, present day...he is obviously amazing. He was very happy with how Nolan looked, despite the fact that his liver enzyme numbers are still pretty high (but trending downward). Based on his echocardiogram, he said that his heart looks as good as 12 weeks post transplant should look. BASICALLY, his new heart got an A+. AND, I am hopeful that his liver enzymes will continue to trend to an appropriate number, so in the meantime, we will be following up with weekly blood draws. Matt said Nolan was absolutely perfect today...on the drive to and from and during the echo...ahhh, we truly feel blessed.

Nolan's next adventure will be back to Pittsburgh for his 4th biopsy on May 16. Sometime soon we will also have follow ups with neurology and gastroenterology. We actually speak to GI on a weekly basis and, of course, I bug our amazing transplant coordinator on a daily basis. :) ALL IN ALL, things are going GREAT. You can literally see him change week to week. He is doing PT once a week, and will be starting OT twice a week. Our nurses work on all of these therapies daily, and you can tell. He is sitting alone, standing assisted, army crawling and quickly catching up. So proud.

That is really the latest with our little guy. Our family spoke tonight about future efforts for Nolan's non profit that we formed, and I am excited for us to start doing some work on raising awareness, giving back and helping others...we'll plan on starting this by 2015. We need the rest of this year to focus on getting life back together and make sure our Nolan is in a good spot. SO, more on that SOON!

I have to throw some shout outs to people. First, one of my best friends, Maggie Davis, has organized a run in Nebraska this weekend to raise money for Nolan's fund. I lived in Nebraska for a lot of my youth, so THANK YOU to all my amazing friends who will be participating this weekend. Second, Bryan Younge. He raised $5,000 with his team, Team Nolan/Cru Kumite. They are doing the Tough Mudder Chicago on May 10. THANK YOU SO MUCH, BRYAN! You are amazing (and so is your family). Congrats to him, too, on his newest baby boy, Hudson! Next, Tony Dippolito. This guys is running the Pittsburgh Half Marathon and raising funds for our heart warrior. The Dippolito's have been very dear friends of ours for a long time and spent some time with us in Pittsburgh while we were there with Nolan. ROOTING FOR YOU BIG CAT! LAST...for today...all of these frozen plunges on Facebook. Many people have donated towards Nolan Heart of Steel fund for these crazy, funny frozen plunges...it is COLD to watch! But, thank you! We appreciate your guts to jump into cold water!

That is all I have tonight. I want to continue to provide updates, and I promise to 3 times a week, at least. Nights just go by so quickly.

Weekend is near!

#nhos

I Am Back!

Sorry for slacking on the updates! We had a busy, but fun weekend. Last week was probably the most normal and best week that we have had since Nolan was born. He has been pretty much a perfect one year old. Very chill, chatty, giggly and on a good routine. As I sit here Riley is asleep next to me on the couch, Nolan is asleep in his swing, Matt and I both on our computers...Pens hockey is on...life is good.

Saturday was a pretty amazing day. It started off with a 5K in Nolan's honor organized by Hayden's Heart non-profit. Ady and Rob Dorsett (parents of Hayden) are amazing people. I felt as though I had known them for a long time when I actually just met them that day. There is an immediate bond between heart families. I can't quite explain it, but it's there. Ady and Rob started Hayden's Heart in memory of their son, Hayden, by helping other families in their time of need and raise CHD (congenital heart defect) awareness. I had heard about Hayden prior to even being pregnant with Nolan, so when Ady reached out to me asking to help, I was honored...and it immediately brought to tears. I have a feeling we will continue to help each other raise awareness about CHD and other pediatric heart conditions (such as cardiomyopathy) for many years...and I look forward to it! Thank you so much, Ady and Rob. And congratulations to you both on the newest member of the family - Hudson is a beautiful baby!

Also on Saturday there was another 5 K event in Danville, PA. Unfortunately I could not make it, however we had other family members representing...Matt's parents, Riley and his aunts (Cathy, Kim and Nancy). The race was organized by friends from the area - Jessica Amon and Erin Marion. They had a good turnout and I think the weather held up! Thank you both so much for taking your time to raise funds for our little man. It means so much to us and will help ensure that he does not have to stress about monies for continued care throughout his lifetime.

On Saturday after the race, this mama had the day off, thanks to my wonderful husband and in-laws. Matt watched Nolan for the day/night and Matt's parents watched Riley...I got to spend the day with some of my favorite gals celebrating bride-to-be, Maureen. We first went to an amazing bridal shower and then had a girls night out at her family's cabin. (Yes - ladies at a cabin...and we actually made our own fire!) Needless to say, I took advantage of my time off and let loose and had LOTS of laughs with these funny gals. I finally feel human again. :) Maureen - I am so happy for you and Conor...you both have so many amazing memories ahead of you. Thank you for letting my family and I be apart of the first memory as husband and wife! And thank you gals for a great evening!

Nolan has a pretty normal upcoming week. Thursday he has an appointment with his cardiologist in Harrisburg. In two weeks we'll be back to Pittsburgh for his fourth biopsy. Pretty soon they will slowly continue to space out! He will have physical therapy appointment this week (once a week), and he'll start occupational therapy next week. He has been sitting for quite awhile on his own, we're practicing army crawling, he eats a little throughout the day...I would like to practice more on the eating, so that's my goal.

Thank you to those who attended the races this past weekend! Ady and I talked, and we want to make it an annual event - so more on that in the future!

#nhos
http://www.haydensheart.org/

And The Good Week Continues

Well, half-way through another week. I hate to wish life away, because I certainly don't want to, but as each week passes I know that life will get a smidgen easier. Yes, we are still bound for the ups and downs. But, the further away we get from the transplant the more we learn about what medicines work for him and what does not, medications will start dropping from the daily regimen, the better he will get physically and the stronger his compromised immune system will get. I am pretty sure as a parent of a transplanted child you never stop "worrying," but I have to imagine that it isn't so intense. Or at least I am hoping for that day.

All in all we have had a pretty good week. Yesterday he had an amazing day. No throw ups, very active and happy. He had decent day today. He did have one large throw up and he is having some funky GI stuff going on, which I will spare you all the details on. I did provide some wonderful pictures to our transplant coordinator, which I know she loved. :) (you're welcome!) Physically he is doing amazing. I was just watching him on the monitor (he is asleep) and he is rolling all over his bed, sleeping with his knees tucked underneath him (like a semi-crawling position) and showing some real mobility. He is standing on his own for a short amount of time and looks as through he is ready to figure out crawling. THAT should be interesting when he is hooked up to a feed.

So tomorrow we have occupational therapy coming for the first time. I am excited to meet our therapist and get this boy EATING! Our nurses have been working daily, but I am ready to get a solid plan and work hard at it. I want to have this tube gone by the end of 2014! Then Friday afternoon Nolan will begin physical therapy. It is awesome because our nurses are very involved and will work on all the therapies everyday throughout the day. (Have I mentioned that I LOVE Williamsport Bayada Pediatric Nurses? Amazing!)

OK - Matt and Riley fell asleep on the couch and they are snoring in synchronization. I am tempted to leave them both down here.

OH! Quick plug for two Nolan events going on Saturday! Hayden's Heart 5K for Nolan will be at the Williamsport High School and Nolan's Heart of Steel 5K will be held in Danville, PA at Hess Field! Thank you to Ady Dorsett and Hayden's Heart Foundation, and Erin Marion and Jessica Amon for organizing and raising monies for Nolan's fund! It means so much to us, we are so blessed!

#nhos

Finally - Some Normal

My days have been super busy being back at home. I enjoy writing updates because I do want to keep everyone in the loop about Nolan's journey and I want Nolan to some day read about his story. I also do not want to forget this part of our lives, as we naturally seem to forget about the more tragic and hard times. This has been some of the most difficult times of our lives, but one where we have gained an amazing appreciation about life, family and friends.

So, Nolan is home! Matt and our warrior got home late Friday night. He is not totally out of the woods yet. When he left CHP his liver enzymes were still high. There are two specific enzymes: alanine transaminase (ALT) and aspartate transainase (AST). Today he got lab draws done and his ALT was 446 and AST was 239. He was over 1000 before, so the levels have come down a lot, but this is still high. We are hoping that these levels were heightened due to medications; because of that they did remove two medications. One was an anti-rejection medicine, Rapamune, and the other was an antibiotic, erythromycin. No other meds have been replaced, so currently we are off of two meds...which is exciting if everything remains stable. Today they also checked his FK level which lets the doctors know that whether or not he is receiving the proper amount of the anti-rejection medicine, Prograf. While he was at CHP he was also tested for various bacterial and viral infections...all of which, so far, have come back negative. WITH ALL OF THIS SAID, we are not 100% sure why the liver enzymes went array, however, it seems we are trending down and we should get a better answer by tomorrow.

Nolan seems to be doing better. Especially today. He has still had some bouts of throw ups here and there, but with his liver enzymes being high, he could not be feeling well. We had a nice Easter holiday. I am pretty sure this was our first holiday all together...at home! The Easter bunny came, Riley, my parents and I went to church, we had a nice family dinner (McLaughlins, Everetts and Uzupis) and then everyone went out to the Cabin and Nolan and I relaxed at home. Just all around a decent day.

Last week was a rough week for us. It seemed like we had some sort of situation every day. Crossing my fingers, today was a great start to the week. First, it was an absolutely gorgeous day. Second, Nolan had lab draws today and they got the draw on the first poke. Third, Nolan was pretty chipper all day...having one significant throw up. Fourth, I am finally getting SOME organization done to the house and Matt has projects going on in the yard. Fifth, Nolan's buddy Ollie is stable and hopefully on his way to some brighter days (more on that in a minute). AND FINALLY - two of my co-workers are about to have babies and I am excited to meet them both! I actually feel like I (dare I say it...) had a normal day. Came home, made dinner, did the normal house chores, baths, etc. It feels SO good!

Last...I would appreciate many prayers for our buddy, Oliver (Ollie). Unfortunately Oliver crashed Easter evening. I have a pit in my stomach because Ashley, Ollie's mom, was standing right over him when it happened and witnessed the entire horrifying moment. FORTUNATELY Ollie is stable and no damage was done. The Halligan family have a big week coming up and some decisions to be made, all that will help this amazing boy gain strength and grow...so I am praying this wonderful family has a positive week. They deserve it.

OK - I am hoping to continue to post daily! If anything, I always put a little something on Nolan's Facebook page: Nolan - Heart of Steel.

Good night! Thank you all for the prayers and support last week. It will be a bumpy year, but we have come so far and have such an amazing team of people (ALL OF YOU!) helping us through!

#nhos

#donatelife

http://childrenspgh.org/2014/04/18/nolans-heart-of-steel/

 

And...Back to Pittsburgh

Sadly, yes...Nolan and his daddy are back in Pittsburgh. I was getting ready for work this morning when I got a phone call from our transplant coordinator. I knew it wasn't a great thing that she was calling first thing in the morning. She said that Nolan's liver enzymes through the roof and GI and Infectious Disease wanted him admitted. Not a fun start to a morning...

So immediately I was ready to pack a bag and had intentions for both Matt and I to head to Pittsburgh. But when Matt and I thought rationally about everything our first thought was Riley. She really has been struggling with us leaving her and we have worked hard these back 3 1/2 weeks to get her back on a routine and a normal schedule. Matt has time off work and it made sense for him to take Nolan and for me to stay back with Riley.

Our nurse was at the house when we got the call that Nolan needed to come back to CHP. I am so thankful because she drew up all our meds and packed up his feeds, medicines and all the other miscellaneous items that Nolan uses throughout the day. I took care of packing his clothes, blankets, diapers, etc. Matt took care of Riley. So, it was a good team effort. We got Matt and Nolan on the road by 8:15 am. Matt and I had a moment feeling defeated, but we got over it quick and went back into "GO TIME" mode knowing that whatever needs to be done for our little guy needs to be done.

You are probably thinking...what do high lever enzymes mean and how to you fix it? This could be simply from one of his anti-rejection medications. That was one of the first things they did. They removed his Rapamune medication. They will run a series of tests; ultrasound, blood work, etc. Hopefully from these tests they will figure out what the problem is.

Matt and Nolan got admitted around 12:30 pm. They are back on 8a with all the wonderful nurses that we love. I know they were excited to see Nolan, but of course no one wants him to be there. Matt has let me know that everything is good...Nolan is in good spirits; he has had some throw ups and blow outs. He did get his ultrasound and his liver looks good and seems to be functioning normally. Some blood panels came back favorably, also...so far, so good.

That is where we are at. I am playing everything by ear. With Easter coming up this weekend and the possibility that this could be a short visit, I am going to stick back home with Riley until we get a better answer as to what is going on. We are all OK and in good spirits. We are realistic that Nolan is still fresh from a transplant and this first year will have its rough patches. Matt and I do have moments that we feel life is dealing us a really crappy hand, but when you look at the "big picture" we are truly blessed. We have conquered so much and will overcome this bump as well.

We do appreciate the continued prayers and want you all to know we feel so grateful for having such an amazing support system helping us through these crazy times. More to come tomorrow morning!

#nhos

Busy Days

I am back!

I am not sure where to start? We now officially have a one year old boy. So hard to believe! Sunday we celebrated Nolan's birthday out at our cabin. It was a fun afternoon with our family and a few close family friends. The weather was amazing and I am so thankful we all got to spend the day outside. Being out at the Cabin has me ready for summer! If the mosquitoes aren't totally horrible this season I am betting we spend much of our time on the Loyalsock Creek.

We had a beautiful birthday cake made by one of my friends, Rachael Thomas. Not only was the cake AWESOME looking (Super Man themed...thanks to our friends in Millville, PA and their creativity), it was absolutely delicious. She made us a dozen cake pops (LOVE!), a cake and a smash cake for our little one year old. We let him at it, and he wasn't interested in eating it, but definitely in to smashing it...then putting it on his daddy's face. Pictures to come soon - I got a new camera and I need to figure out how to get my pictures off my camera using our wireless Internet. I hope to have them tomorrow!

The day got ahead of us and we didn't even get to open presents. So, Riley and I took care of that yesterday. We had a little opening party and Nolan got some great gifts. Thank you! It has been a challenge reigning Miss Riley in and sharing. She has been a little off her game...breaking rules, not pottying...THREE YEAR OLDS! They are a challenge! She is harder to deal with than Nolan! BUT, her cuteness always seems to make us forget about it all at the end of the day.

Nolan had a pretty busy day. He is still having some throw ups. We are always in constant contact with our wonderful transplant coordinator, and she keeps the doctors informed on what's going on with Nolan. So, we are just keeping an eye on him. Babies do throw up, he is teething like crazy and his gag reflex seems to be pretty sensitive again. I am looking forward to our therapy sessions starting up again next week! I think once we get these services started back up Nolan is going to progress quickly. This morning we had labs and then I heard from our home nurse that Nolan decided to pull his feeding tube out. She managed to get a new one placed and the rest of the day went pretty well for him.

I did my good deed today and donated blood! I am going to try to do it as much as I can. Thinking about how much blood Nolan received while at CHP, donating blood is such an easy, quick way to give back (if you can stomach it!)

Tomorrow Matt and I are going to go out on our first date in quite a while. My parents are going to keep an eye on the kids for a few hours so we can have some adult time. It is definitely needed and I am looking forward to it!

Life at home is VERY SLOWLY coming together. I have so many things I want to do; I am trying to just do what I can and not stress. It is so hard. I wish I could rest my brain! On that note, I am going to try to turn it off and get some rest. We are getting consistent 3 am wake up calls...let's hope for a FULL night of rest!

#nhos

Happy FIRST Birthday To Our Baby Boy

Dear Nolan,

Today we celebrate your first birthday. Only 3 short weeks ago we were leaving Children's Hospital of Pittsburgh. Your first year of life has been a roller coaster that most people will never experience in a lifetime. Because of many prayers, an amazing team of doctorOs, nurses and therapists...and last, but most important, your donor and their family, you are here celebrating this day. Seven months ago your dad and I could not promise that you would see this day...ande we are! We look forward to many more to come.

You were born on a Friday afternoon, April 12, 2013, at Williamsport Regional Medical Center. I went into preterm labor at 33 weeks and April 12 was the 5th day at the hospital and my 34th week of pregnancy. It was time for you to come into the world, we could wait no longer. You were perfect in every way! You had a head full to dark hair and a good cry! Because you were early we were afraid you may need further support in the Level 2 nursery. After four hours of observation, you were cleared to stay with us in our hospital room. We were released in the normal amount of time and ready to start our lives as a family of 4.

Two weeks went by and we noticed your color was off and you were listless while in your swing one afternoon. Being cautious, we decided to take you to the emergency department at Williamsport Regional Medical Center. A few more similar episodes like this occurred, and while hooked up to the monitors we could see that you were having apnea episodes and your oxygen level was not stable. We spent 5 days at the hospital and was discharged with an apnea monitor and doses of caffeine, which acted as a stimulant. When things did not get any better, we went back to Williamsport and they felt more comfortable for you to go to the Children's Hospital at Geisinger. We were there for two weeks where they diagnosed you with apnea of prematurity.

The following three months you spent some time here and there in the hospital for respiratory issues. You would need to be on oxygen for a few days and maybe some antibiotics. The whole month of September you had a raspy cold which we were told to treat with breathing treatments. On September 29 we were not happy with the way you sounded and with the fact that no progress was being made. We agreed to take you to your doctor on the morning of September 30. I am so thankful we got in first thing in the morning because by 3 PM you were being taken by LifeFlight to Children's Hospital at Hershey. The rest of the story is documented day to day. And now, here we are. You are sleeping soundly in your swing, and I am actually less nervous of you doing that then I was ever in your entire life. You are healthy. You are going to get to do all the things that we had planned for you the day you joined our family on that beautiful day, April 12, 2013. A day much like today.

I am sure you are going to have so many questions for your dad and I about your heart, our life at CHP, your team involved in your care, what each scar on your body is from, who your donor was, etc. I can't wait for the day to actually sit down with you and tell you all  about it. Most importantly, to let you know what an amazing, inspirational person you are for so many. You remind us all what is important in life...friends, family, faith, love. I would be lying if I said everything is PERFECT right now, it's not. Your dad and I are still trying to acclimate to our new life, learn how to take care of two kids and make sure you and Riley are getting all you need in life...and more!

We are excited for tomorrow. We are going to celebrate your birthday with your grandparents at the Cabin. It will be a day to celebrate not just your first year...but LIFE. We all are so thankful you are with us. You were meant to be here...I knew it all along.

We love you so much, Nolan. We hope your second year of life is filled with HEALTH and HAPPINESS.

With all of our hearts, we love you more than you know.

Love,
Mommy and Daddy