A Big Monday

A big day for the McLaughlin's. We had an early morning, Riley waking us up around 5:30 am. Matt took her downstairs then Nolan woke up shortly after that. SO, all of us were up by 6 am watching cartoons. Then Daddy and Riley got ready and headed out for the start to a big day...Riley's first day back at school!

Nolan and I had a good morning. He had one throw up all day, but is still pretty gaggy. Quite frankly, I am still not feeling 100% and neither is Matt, so we are all still recovering, but all doing better! We had our first visit with Nolan's nurses from Bayada Pediatrics. They were amazing! I feel so comfortable and at ease! It's always hard leaving your kids...it was hard seeing Riley leaving today, but meeting the clinical manager and one of the nurses was wonderful. We are so fortunate to have them in our area!

After we met with the nurses and got our plan set for tomorrow, Nolan took an amazing nap. I got a chance to get some stuff done around the house and feel like I made a little dent. A little here and a little there. I think slowly I am feeling better about our new norm, adjusting...and each day will get easier. So, tomorrow I start back to work. I look forward to it! Wednesday Matt and I are taking the day off work because Nolan has appointments locally. First we have an appointment with our family doctor, then labs and finally we have to drive to Harrisburg to meet with our Hershey Medical Center Pediatric Cardiologist. What is great is that once a month Hershey Pediatric Cardiologists come up to Williamsport for a clinic, so we will be able to have our appointment here. This will save us the drive to Harrisburg.

It was great to see Riley come home from school today. She loved it and told us she was ready to go back tomorrow...so that is good! We are getting ready to head to bed, so I hope everyone had a great Monday!

#nhos

6 Months Later

Phew! Through another day. I think there are a few things we are adapting to. One, being parents again for two young ones...we were only 4 1/2 months in when we started this journey, so we were still definitely adapting. And even then we were in and out of the hospital with Nolan. Two, we have done many projects around the house during this time...things that were already scheduled. On top of that we used the house as a transient stop, so needless to say, home life is a little disorganized. This is very minor, but drives me crazy! :) Three, life with Nolan. Constant fear, wonder and hoping that he is OK! Tomorrow our home nursing begins. I will be staying home for the day to meet with the nurses that will be rotating for Nolan's care and Tuesday I will be back to work! (or so goes the plan!) Another big start is that Riley will be going back to school! I think it will be really good for her. She needs to be around kids, get some structure, learn how to follow rules...and have fun out of the house! So, tomorrow is a big day.

As far as how Nolan is doing, he seems to be having a better day. He only threw up one, around 3 am. And we think we know what the issue is. We are pretty sure Nolan had a GI bug because I have been sick all day, too. Today I learned that being a mom of two does not really allow you to rest when you are sick! I have been sanitizing everything all day today in hopes Matt or Riley do not get sick. YUCK! Stomach bug is the worst!!

My last part of this post is that today marks 6 months since we almost lost Nolan and our journey began. I always reflect back to that day and think if everything didn't happen the way that it did this would have been a totally different story. So many people made the best decisions that day that saved Nolan's life. I am forever grateful to them all.

I am going to cut this short...I am still not 100% and am going to try to get to bed ASAP. Hope everyone had a great weekend!

#nhos

First 24 Hours

I am sorry I haven't posted in a few days. Since Thursday life has been going a million miles a minute. Thursday and Friday in Pittsburgh we spent the time going to appointments and packing up the apartment. It wasn't as bad as I anticipated and after our appointment on Friday we hit the road back east. I was so amazed with Nolan. He did fantastic the whole drive home and only slept a little bit. The drive was long and nerve wracking. After being in such a critical state and walking out of the hospital being "free," you are on high alert for something bad to happen. Because that is what our life has been the past 6 months. We are always prepared for the worst.

Driving into Muncy was like we were getting a big hug. There was a "Welcome Home Nolan" sign on our front door with a lot of signatures from our colleagues at Susquehanna Health, balloons and our dear Riley waiting for us. I was the first to walk in the door (Fred and Janice Springman were watching Riley) and Janice was holding Riley so she could see us walking up the walkway...and Riley says to me, "is Noley coming??" Didn't even hug me, she was just all about seeing her little brother. When Nolan got into the house, it was so awesome to see them look at each other. THEY LOOK SO MUCH ALIKE! I just never took notice to how similar they are. Immediately Riley had to hold her brother, and it warmed our hearts. I couldn't believe it. This was the day we have been praying for since September 30. We made it. I felt like a mom again. I looked at both of them and can't believe they are our kids. So blessed. This is what is important in life. Family. Friends. Happiness.

ANNNND, I need to remind myself of that. :) I AM a little stressed because our home is disorganized, so my OCD is on full red alert. I keep taking deep breaths and telling myself...a little at a time, more importantly, enjoy time with family. So hard when you just want to get it done!! It will take me months, but OH WELL!

So, today hasn't been the greatest day for Nolan. He threw up a lot for some reason. So, we changed up his feeds with Pedialyte here and there between his formula feeds to make sure he was getting the proper electrolytes and staying hydrated. Since about 4 pm, he has been throw up free, so we started him on his continuous night feeds and are crossing our fingers everything stays down! Matt's parents stopped by this afternoon and my mom and dad brought us dinner. I am hoping we get some sleep tonight because I ended up sleeping with Riley (she woke us up in the middle of the night) and then Nolan was up at 5 am throwing up. Never a dull moment!

I hope everyone is having a great weekend! And I do want to thank everyone for all the love and support. I have yet to get out personal thank yous, but they are in the works. I just hope everyone knows that we appreciate EVERYTHING that has been done for us. We really could not have gotten through this without your prayers, words of encouragement, donations, letters, cards, gifts, dinners....I can't wait to pay it forward!

#nhos

Half Way Through the Week!

I am definitely getting bored here cooped up at the Ronald McDonald House. Tomorrow Matt and my mom arrive to help start our journey home on Friday! We are so excited and in disbelief that this day is so close. All sorts of emotions...mainly scared to be 4 hours from CHP. BUT, I know we will be in good hands back in our area.

Nolan and I were up bright and early again. 5 am seems to be the waking hour these days. It goes something like...Nolan wakes up super happy, gets cranky (because he is still tired), takes one to two blow out poops, then falls back asleep. This all before 7:30 - 8 am. But today we had to be at the lab by 8 am. We got in and out pretty quick - and got a blood draw on the first poke!

After that, we came back to the Ronald McDonald House and Nolan took a nap. At 11 am we were back over to the hospital for speech therapy. He did AMAZING today! He probably ate about a 1/4 of a jar of carrots...swallowing them and all. During the day I also worked on giving him a bottle, then I fed him carrots and apples tonight. I think consistently introducing it and having him see us eat will help regain his ability to eat by mouth. I can't wait for the day we can take out the NG tube for good!

It has been tough being stuck here, however it has allowed me to spend some quality time with Nolan. I really feel like I got to know him all over again. He is such an animated little guy. I just let him go on the floor and he will roll from one side of the room to the other. Every day he is stronger and doing more. He is chatting, saying 'mama' and 'dada.' He will look at you and try to talk...lots of babble. So fun to watch!

Tomorrow is a busy day. We have clinic at 10:30 am, then OT and PT from 3 - 5 pm. Matt and my mom will not show up until later in the evening.

Thank you all for the continued prayers and support! Our journey is certainly not over, this is just the beginning. I pray Nolan has a smooth life from here on out, but, that is definitely an uncertainty. We will continue to fight the fight as each battle comes. I have hope and a good feeling that he will do amazing things in life!

I see I got ahead of myself yesterday and said we only had 2 more nights here. :) I think I am going crazy here in my own thoughts!

REALLY - now...2 more nights!

#nhos

Two More Nights! (CORRECTION! 3 More Nights)

Ahhhh - I still can't believe we are all going to be home TOGETHER in 3 days! Our family will be one again. I hope we never have to be apart for this long again. Matt and I have not spent a full week together since October 13. That was the day that Nolan was placed on the ventricular assist device. I hope we still like each other! HA!

In all honesty, I am a little sad to leave Pittsburgh. I wish I could see every doctor, surgeon, nurse and therapist that has been with us through this entire journey and thank them. It is because of them that Nolan is here today. I remember one of the first night's at CHP when Nolan wasn't doing well, Dr. Domnina, one of the directors in the CICU, came up to me and gave me a big hug. She told me that I needed to get out of the CICU and that Matt and I should take some time to ourselves and have a moment to let life settle. She assured me Nolan was going to be OK, that she wouldn't take her eyes off of him and she would see me in the morning (basically, she kicked us out!) That meant so much to me and will stay with me forever. That hug will stay with me. It was the first moment that I knew he was on thin ice and a moment that I knew that Dr. Dominina cared. I knew she and her staff would do all they could to keep Nolan with us.

So many different memories that I will keep forever. We  have changed these past 6 months. I am pretty sure that Matt and I have mental scars that will never fade, but all around, I think our change is for the better. I know I have learned so much about myself and even about Matt, who I have been with for 8 years. I do think it has made us stronger as people and as a couple - and I know I will cherish life a little more...never take the little things in life for granted! (like changing 3 blow out diapers daily...maybe even 4)

Nolan had a good day. He is teething like crazy, so that did add some crankiness to the day. Pretty much our morning went the same as before (I like routine!) Around 12:45 pm I had a visit from a couple people from UPMC's marketing department. They interviewed me about my all around experience at CHP. One of them was a videographer, so that made it interesting! I am pretty sure I babbled away, so...stay tuned for that! During the taping Ashley, Ollie's mom, brought us a delicious lunch from an amazing Chinese restaurant in Bloomfield (near the hospital) So, after marketing left we got to catch up quick and eat, then Nolan and I were off to speech therapy. Unfortunately I think he was sleepy during therapy, but it was good to talk with the therapist about what our goals were, follow up care at home and things to practice. He actually drank a little from a sippy cup, so that is exciting!

After therapy I roamed the hospital a bit. I stopped up on 8a to say good-bye to some of my favorite nurses. We will miss them all! And then I went do to the CICU to visit with Ashley, Trevor and Ollie. He is still continuing to hold steady. No seizure activity the entire day, so that is good. The tiniest of steps of improvement means the world! I think about Ollie every minute and pray he continues on with baby steps towards recovery.

Well, Nolan is in bed, and I am going to follow. We have early morning labs, AND he will probably get me up early, again! Acclimating back to life with a baby! I love it more than I ever have...ever.

#nhos

Two Months Post Transplant

Two months ago a family may have sat in despair having just lost their baby. At that time (and maybe not even now) they did not know that because of their decision to donate their dear child's organs, they may have saved up to 8 lives. One of those lives was our amazingly strong son, Nolan. Two months ago he received the greatest gift...the most priceless gift...life. So much has happened in these past two months. It hasn't been easy...but, he is here. And he is what makes my family whole and even stronger today.

I look at Nolan and can't believe what we went through. Every day he grows stronger and is catching up on milestones. I think back to the beginning and it all seems like a dream. Did all of this really happen? My son had a heart transplant. He has another child's heart inside of him. It is all so crazy...I think I am allowing myself to really process it now.

It is mind blowing how far we have come in the past 2 weeks - actually, the past almost 6 months! I am sitting in a chair in our apartment at the Ronald McDonald House and from this chair I can look out the window and see the CICU. I can actually see the room where we spent most of our time. When I used to come back from the hospital at night I used to stare out the window to see if anything was going on in Nolan's room for fear he would have a stroke or heart complications. At that time I couldn't even imagine being in the position we are in now. Just like now, I can't imagine being home. But it's so close.

Nolan had a great day. He woke up BRIGHT and early. By 7:30 am I changed THREE...yes, THREE blow out diapers. The last one involved a bath. We kept ourselves busy working on PT and OT, and while Nolan napped, I worked. So, it was a productive day. Around 3 pm we went to our actual OT and PT appointments. He did awesome in both! He ate some carrots and we also worked on the bottle. Slow improvement, but, nevertheless, improvement. During physical therapy Nolan showed off his sitting skills. I bet within the next week or two he will be totally sitting on his own (he does for about a minute) and in about one month, crawling. These are BETS by me, not told to me by the therapist. He improves daily and impresses us all!

So, we had a nice Monday. Our week is pretty busy, which I am happy about because it will go fast. My goal is just to get to Thursday without Nolan pulling out his feeding tube. That is my worst fear! By the end of the week we will be all set to assume care back in our neck of the woods. We will be back here May 16 for his next biopsy.

Lastly, an update from Ashley, Ollie's mom:

Ollie didn't have anymore seizures overnight and he also didn't have any heart rate dips either. He only had one de-stat episode but came back up quickly. They obviously still have him on a lot of medication but he's still moving all four extremities and he is reactive. They are also giving him some platelets. They said they only had to give bicarb once and now his blood gas looks good. Pretty much, it's as good of a night as we could have hoped and prayed for. Obviously not out of the woods yet but he had a good night.

Thank you for all of the thoughts and prayers for our little family and please continue them.

‪#‎OllieStrong‬

Keep the prayers coming for all these wonderfully strong kids here at CHP. 

#nhos 

Ollie Strong

Tonight I am dedicating my post to our good friends here, Ashley and Trevor Halligan, and their beautiful son, Oliver Robert Halligan. Oliver was born on November 11, 2013. At 18 hours old, he was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR). With TAPVR, the veins that are supposed to circulate the oxygenated blood from his lungs to his heart were not going back to his heart. Instead, they were coming together and going through Oliver’s diaphragm and emptying into his liver.

Oliver has been at Children’s Hospital of Pittsburgh of UPMC since the day after he was born. During this time he has undergone two open heart surgeries, two cardiac arrests, seizures, kidney failure and a PD catheter surgery. On Friday Ollie stopped breathing again and had to be reintubated. After some tests and a CT scan showed that he was having undisclosed seizures and has significant bleeding on the right side of his brain, as well as some on the left. His brain is still pretty swollen and early this week he will receive an MRI to get a better look at the brain activity.

I remember first meeting Ashley in the CICU in November. Matt and I were going through some pretty tough times then, as was she, but she was so full of positivity and life (and still is!) Trying to stay upbeat and positive when your child is fighting for their life is the hardest thing to do. But, I admire her strength and it truly helped me through my dark days. One foot in front of the next. Scared what each hour may bring. This is just not a fair world, but Ashley and I have had many talks and we both agree...we as parents can only do so much. Some days you just close your eyes, cross your fingers and toes, hold on to your rosary or good luck charm and PRAY you wake up in the morning and start the day with good news. I have had many nights like this and it pains me that tonight her and Trevor are having to have yet another night like this.

So, I ask all of you to please say prayers for dear Ollie tonight, and pray for some peace for Ashley and Trevor. The fight is never over. I hope tomorrow morning is a fresh start for Ollie and new road to recovery. This little man deserves it and so do his mom and dad!

#olliestrong
#nhos 

Sunny Saturday

What a beautiful day! I actually woke up really early this morning before anyone else. Both Matt and Nolan didn't get out of bed until about 7:30 am. So, this morning I made some coffee, cleaned up the apartment, got meds ready, etc. It was nice and relaxing...almost NORMAL!

I had three missions today. First was to get to Target and buy a car seat for Nolan. CHECK! Second was to go to my old co-worker's baby shower. CHECK! And third was to get back to the Ronald McDonald House to visit with our good friends, Autumn and Tony Dippolito, who stopped by to see us. CHECK! Albeit late to 2 out of 3 missions, I got them all done. The baby shower was really nice. Bridget is one of the cutest pregnant women I have seen. She looks amazing and I am so excited for her, her husband and their son. They are expecting another boy. Congrats to you both! Then, it's always great to see the Dippolito's. We have nothing but laughs when we are together.

And to add on to what was an amazing day, Matt and I got Nolan outside and went for a walk. It was gorgeous and so refreshing! We then had our friends Ashley and Trevor Halligan over for pizza and wings...and basketball. Their son is Ollie, he is still currently in the CICU, so they can use all the prayers in the world! He is doing well, he just needs to have consistent GOOD days so he can get to 8a and then HOME!

Nolan is doing wonderfully. He is truly amazing. I think we are ready. I feel it. He actually sat up without any help for over a minute! We work on some PT today, ate some sweet potatoes, practice with the bottle...I am so proud of him. I almost actually feel like we had a normal day. I pray this continues.

Matt is heading home tomorrow...then he will be back Thursday with my mom or dad so we can pack up the apartment. THEN FRIDAY...Matt and I will travel home with our little man!

Hoping for another amazing day tomorrow...and for you all, too!

#nhos

Could It Be?!?!

Sorry I did not post last night. Riley and I got cozy on the couch and fell asleep. I woke up around midnight and was super confused where I was at!

Matt is with Nolan back in Pittsburgh. His mom is there with them helping out. Yesterday Nolan had a speech therapy consult. Matt said he didn't do as great eating as the other day, but that is OK because this was an evaluation for insurance purposes to vouch that he needs speech therapy. Our plan is to have either OT or speech therapy every day since oral feeds seem to be our biggest hurdle right now. I think we'll have PT 2 - 3 days a week. This is while we are at CHP and at home (I HOPE!)

Today was a busy day. Nolan had labs at 8 am, followed by his cardiology clinic visit. Since Nolan just had an echocardiogram on Tuesday before his biopsy, they didn't do another one because they said his heart looks great. And his liver and kidney functions look normal. So, we went down to lasix twice a day instead of three times. And last, but not least, we were told that we can head home (Muncy) next Friday! Ahhhh! I can't believe it! Can this really be? HOME. All of us, together. My mind is spinning. So much stuff I wanted to do before he got home, but OH WELL. We'll have all the time in the world to get our home life back together...but HOME, all four of us. It seems too good to be true!

With that said, we are praying we have a good weekend and week. They have been going up on his bolus feeds for a shorter amount of time. He has not thrown up or really gagged in over 3 days! We have a GI consult before we go home on March 28. I am off to Pittsburgh tomorrow after work. I am really looking forward to this being over and all of us being home together. I think Riley really needs it. She is going to have some changes coming up in the near future also. Riley will be heading to pre-school starting March 31. On that day we also should have home nursing set up for Nolan 5 days a week, 10 hours a day. We will have this for about 6 months. He still needs some medical attention because of all the medicines he is on, the NG tube and feeds and for someone that has some medical background to know if he needs medical attention.

It's a lot. We we are ready, but in my true OCD fashion, I wish I could have the house 100% perfect. But, Matt's mom spent a lot of time cleaning his room and our bathroom from top to bottom. The rest of our house is just clutter from it being our dumping ground as we come back and forth from our weeks in Pittsburgh. SOON ENOUGH we will have our HOME back. :) I just can't wait.

OK - Riley and I are heading to Hoopla's with my mom and dad to play some games and watching some basketball. A week from tomorrow we should be traveling back east with our boy!!

#nhos

Biopsy Day #3

It was an early start for all of us. I got up around 5:30 am, got the coffee on and prepared us for the day. We all were out the door by 6:20 am. We got registered and check-in at same day surgery and went back to prep just about 7 am. Luckily I got to rock him to sleep before they took him back, which was nice because he didn't wake up at all going into the OR. He was sedated and intubated for the procedure. It went pretty quick, about an hour or so, and we were told the procedure went well. We will know the results of the biopsy tomorrow, however, they told us that the pressure of his new heart looks better. So, for preliminary news, that is good!

While he was in recovery, they came out and told us that Nolan needed his mom's touch. In the recovery room they have two zones. First zone is where they go immediately after surgery. It is just a large room with a lot of bays where there's a nurse observing the patient. Nolan was NOT happy. They changed his picc line dressing and he got ANGRY. So, once I got there, I got him calmed down. From there we went to zone two, which is where patients go until they are discharged. Slowly Nolan came out of sedation, we watched some cartoons, gave him his meds and started his feeds. While we were there, our transplant coordinator, Alice, came by to visit and see how things were going. We did find out that his blood cultures from the weekend came back negative, so that is good news. Alice let us know by the end of the week we should have our timeline as to when we will be heading back east. She guesses in about two weeks or so.

Nolan did great the rest of the day. So far, no throw ups all day! I have to admit that this has been a pretty emotional week for me. I am not sure if it is just reality of what is going on, being stuck at the Ronald McDonald House, missing Riley...missing life? All the above? In any case, I have been struggling a bit. I am thankful because one of my best friends, Alisa, stopped by to drop off a Mama-roo for us to use and she knew I was in need of some time outside the Ronald McDonald House. It was a beautiful day, so Alisa and I got some latte's and went for a walk. I definitely needed it and that small amount of time gave me time to breathe and it felt like a huge weight was lifted off my shoulders. We are going to be OK. Life will be OK and will be normal again sooner than I think. This has been the hardest thing I have ever done...ever. I try to keep everything in perspective, but sometimes...it is so hard! You tend to have pitty parties, ask the why's...but, like some have told me, I have to remember what is important. He is here. And for that, I am thankful. I just pray for a great result from today's procedure and hear the words...Nolan is ready to go home SOON.

Tomorrow morning I am heading back to Muncy for a few days. Matt will spend his first day/night alone with Nolan and his mom will come Thursday and leave Friday. This weekend I think my parents and Riley are going to come to Pittsburgh, so I look forward to spending the weekend with BOTH of our kids!

Nolan has a busy week coming up. Tomorrow he has an evaluation with speech therapy. Thursday he has lab work, echocardiogram and a clinic visit, along with OT and PT later in the afternoon. Alice called us this evening to let us know that we could stop his medication, diuril. One more med off the list! This is a diuretic; he is also on lasix (which is also a diuretic), and will probably be on that for some time. Alice also let us know that Nolan will be having another GI consult to revisit his belly issues once more before we go home and devise a goal with his feeds. The hope is to increase his feeds during the day and decrease his continuous feeds at night. Ultimate goal is for him to actually eat. All of this will come in time.

So, that was our day. I hope to bring great news tomorrow about our biopsy!

#nhos

Happy St. Patrick's Day!

Nolan had an amazing day. We had one really small throw up the entire day and he was pretty much a happy boy all day! This morning around 10 am our home nurse came by to change his PICC line dressing and flush the line. WELL, I must have done something with all the supplies because I couldn't find the dressing kit ANYWHERE, so she just flushed it and we will get his dressing changed tomorrow.

Later on one of my good friends and her husband, Allison and Mike Smith, stopped by to meet Nolan and hang out for a bit. While they were here Nolan gave us a little test. He pulled out his NG tube. I felt bad because Mike and Allie were here - and Nolan does NOT like getting the NG placed. So, Matt did a great job getting it back in and I taped the bad boy back to his face. It was placed fine and we were on our way! I think that was one of my fears being outpatient, but we conquered it! (Well, Matt did most of the work, but I am always there for the support...or so I think I am.)

After Mike and Allison left we had to head over to the hospital for his occupational and physical therapy appointments. We have a very animated and fun occupational therapist, Kim, that does such a great job at engaging Nolan during occupational therapy. Today we worked on spoon feeds. She had carrots for him; admittedly, I was a little ify about the carrots. She had a textured spoon, which Nolan seems to like. (PS: Nolan's two front teeth are coming in...you can see them breaking through. Poor guy - we had to give him some Tylenol today because he it was obvious he was in some pain.) So, when Kim introduced the carrots to him, he went crazy! He actually grabbed the spoon and was putting it in his mouth, while

swallowing the carrots! He didn't eat a lot, but probably about 15 ml. It was so encouraging! Also, earlier in the day I worked on giving him a bottle, and he also seemed to enjoy it! There's nothing more that I would love than to get rid of the NG tube! We also gave him a Mum-um to chew on, which he seemed to take some interest to. All around, this was such a great appointment to experience.

Next was physical therapy. Elizabeth is our PT and has been working with Nolan during his inpatient stay, also. He is doing so well rolling from his belly to his back, and visa versa. He is lifted his head up while on his belly past the 90 degree angle and is doing well using both of his hands to pick up items and bring to his mouth. Our homework is to work on his sitting and strengthening his right side, which is probably weakened due to his stroke(s). All in all, Elizabeth was very happy with his progress in the short amount of time, and Matt and I plan to work hard with Nolan this week. Our next appointment's with OT and PT is Thursday.

We have an early morning tomorrow. We have to be at Same Day Surgery at 6:30 am to check in for Nolan's 3rd biopsy. Once we get the results we should probably have a timeline as to how much longer we need to stay here in Pittsburgh. We pray for positive results so we can continue on to our next chapter - BRINGING NOLAN HOME!

#nhos

Rough Days Can Lead to Better Days

Yesterday started off a little rough. We had to be at the lab at 8 am so he could get some blood cultures drawn to see if the infection he was being treated for (the 6 week IV antibiotic) was gone. He had to get draws both from his picc line and peripherally (from an actual poke into his skin). Good sign was that they got his vein on the first peripheral draw which shows that his veins are getting better. Maybe we can get rid of the picc line soon!

Throughout yesterday morning Nolan threw up probably about 6 times. We were in contact with our doctors during this time. For one of his bolus feeds we gave him pedialyte instead of formula. He kept everything down during that time. Matt got here around noon and my mom left shortly after. For his noon bolus feed we went back to formula. He still seemed pretty lethargic, so we called the doctors (again!) and they were going to meet us at the ED at 2. From about 12:30 - 1 pm he seemed to turn a corner. His energy came back, smiley, bubbly...so, we called and let the doctor's know we were going to hold out. Since then, he has been great. Maybe one or two small throw ups, nothing major. He seems...healthy! Not sure why there was a 24 + hour stretch of throw ups and low energy. He did have a lot of blood draws, this was the first 24 hours without any sedation meds (withdraw?)...whatever the case may be, he seems to be back to his happy self.

Last night he went to sleep around 8 pm. We had a wake up call around 2:30 am...but he was back to sleep around 3 am. Then we all slept until his 8 am meds! Matt and I went through his 8 am meds quick, got his formula made for the day, pushed is 9 am meds...we worked well together and I think we have a system down. Now we have a relaxing day ahead of us. We can catch up on work, play with Nolan, basketball is on...all we are truly missing is our Riley Roo. But, I have some confidence that this week we may have news on how much time we have left at CHP. We are lined up with a pediatric cardiologist at Children's Hospital at Hershey (who we were actually originally with at Hershey when this all started) who will follow Nolan at home. I believe we will come to CHP for biopsies and check ups throughout the year(s) (and as far as I am concerned any other surgeries he may need in the future)

So, now Nolan just went down for his mid-morning nap. When he is feeling good he is really a great baby boy. Puts himself to sleep...it's great. :)

More later! Thank you all for the continued prayers and support - and we hope you all have a great Sunday!

#nhos

Life Outside of the Hospital

Where do I begin? Sorry I have not caught up since Tuesday night announcing that we were being released on Wednesday instead of Thursday. Needless to say, I have been busier than I can ever remember. Honestly, it feels almost exactly like bringing home a newborn for the first time. I have been trying to find my "system" and get it down. You have a schedule to follow, appointments to be at...making sure you have all your meds and feeding items for these appointments. BEING PREPARED. So, I think we are down to a system...I am sure it will change...but for now, it works. I am always open to suggestions for anyone who has ever had to give a large amounts of various medications through the day. :)

A quick rundown of events. Wednesday we were discharged around 5 pm. My wonderful friend, Alisa, came to help with the transition. Once we were at the Ronald McDonald House I start to unpack all the meds, get things in their spot...letting my OCD spill all over the place. Then our home nurse came by to show me how to use the feeding pump and flush his picc line. After that, Alisa went home and I got the little guy to bed. I had a hard time falling asleep, and finally I did. Then I got woken up around 2:30 am, picked him up and he threw up all over me and the bed. SO, by 3:15 am I got everything settled and him back to sleep.

Thursday we woke up around 6:30 am. My mom came this day and during the morning I continued trying to get everything put away and organized (meds, clothes, medical equipment, etc.); my amazing mom stopped at Target to pick up groceries for us and other stuff we needed. After she got here we had OT and PT at 3 pm and 4 pm. Throughout the day Nolan still was having vomiting episodes from time to time. More so than what we had been having. Our transplant coordinator (who is amazing and so helpful!) called to check in and see how we were. I let her know about the throw ups, so we decided to keep a close eye on it during the day because Friday (today) we had an appointment.

OT was NOT a great success. Nolan literally fell asleep in the high chair as our OT was trying to evaluate him. (PS: Nolan is not the biggest fan of OT because he is NOT a fan of eating by mouth!) So, Kim, our OT did what she could and we decided to call it quits. WELL, about 20 minutes later our PT, Elizabeth, walks in and he automatically wakes up. When we got over to the room he was ready to play and roll for her and Lauren (another PT). Such a faker. :) We'll get him Monday. Over the night Nolan threw up a few more times. I ended up stopping his feeds over the night for about 45 minutes because I almost thought he was too full.

This morning we had to be to the lab by 7:30 am. Because he had a picc line in, we need an IV team to come and pull the draws, flush and lock it. Well, the picc line was clogged (probably by little clot in the line). Good thing was they could push fluid through, they just weren't getting a blood return. Because of that we needed to get TPA pushed through the line to break up the clot. To do that we had to go to the ED because that is one of the areas they can administer it and a doctor needs to be there. SO, we headed to the ED and got it taken care of and our labs drawn. We also had a clinic visit today with Dr. Lal and to see our transplant coordinator, Alice. They were also concerned about the continued vomiting, so they had me come to the cardiology clinic after we were done at the ED. While we were there he had an

echocardiogram and we met with Dr. Lal and Alice to come up with a game plan. We ended up having to make some adjustments to one of his antirejection levels and we brought down his continuous feeds at night. I think those were the major items changed. The rest of the day we spent at the Ronald McDonald house. He continued to have a few more vomits, so we were told to give him some Pedialyte for one of his feeds. Since then he has not thrown up and he is back on continuous feeds through the night. Hope it is a quiet one.

That is really what the last few days have been like. Just trying to figure it ALL out. I am tired. I am feeling a little down, but at the same time so happy! Things are going OK, not great...not bad...so, I can't be that upset. He is truly very happy and easy. I just feel so bad for him throwing up. I am sure we will get it all figured out...we are all just anxious about LIFE and what it will be like down the road.

I am really, really tired. Matt comes tomorrow. I may be staying here until Wednesday. It's a two person job right now until everyone feel comfortable. Matt's mom will be here Wednesday through Friday morning next week so Matt isn't alone.

Thank you all for the prayers and support. Definitely needed and for our other friends at CHP.

#nhos

It's All Happening!

The sun was shining, the air was warm, Nolan slept through the ENTIRE night...and I got the news that tomorrow we will be discharged to the Ronald McDonald  House! I thought it was going to be Thursday, but he receives his last dose of antibiotics at 4 pm tomorrow, so after that we are ready to go! Two weeks ago when we thought we were being discharged, I honestly was not ready. But now, I have a gut feeling we are good and I feel prepared to move forward.

So, trying to follow some sort of "routine," I got here around 8 am and gave Nolan a bath. I was told by our nurse that he slept through the entire night (so excited!) Around 10 am he had a little cat nap and after I got him down on his play mat to get him out of bed. Physical therapy came in and had a great session. They are working on his reaching because they feel he is lagging a little bit in that respect, however, today he did great! He was so active and really seemed to be working hard! We have some great PTs here that have been working with Nolan for a long time! I know it's exciting for them to see him excel.

Nolan and I had a great visit from our friend, Lori. I met Lori through various heart-related groups on Facebook, and she is the Children's Heart Foundation's Pennsylvania Chapter President. Her daughter, whose name is ironically Riley, was born with a congenital heart defect and now has a pacemaker. It was so nice to finally meet her and chat about our kids, experiences and have her meet Nolan. Thank you for coming by, Lori!

After Lori left, Nolan got to hang out with his amazing music therapist. They jammed out for awhile while I did some work. I thought Nolan would go down for a nap after, but the boy was ready to party. So, lucky enough we went to one on the 6th floor! March is Child Life month, so all the Child Life Specialist had a party with a bunch of fun stuff for the kids to do. Nolan and I strolled around a bit, but actually spent most of the time outside on the terrace. What a gorgeous day! I am thankful we got a little taste of it!

I knew that Nolan needed to nap, so, with the suggestion of our nurse...who knows Nolan well...we put on his favorite movie - The Little Mermaid. He watched it for a little then dozed off while I rocked him to sleep. The rest of the day was spent a lot with our nurse since we knew it was going to be our last day together. As I was rocking Nolan to sleep tonight, I was slowly trying to place Nolan into bed, and his feeding tube was stuck to my shirt and it came out! I knew this was a sign that I had to learn how to do this. So, thanks to the great teaching of our night nurse, she guided me through the entire process...and I successfully placed it on the second try. It's definitely a two person job, but, I guided that sucker in. Felt horrible, but, we got it done!

And that was our day. Last night at CHP...hopefully...for a long time. BUT, in this world, we take everything day by day. :)

#nhos

Spring-Like Monday

Nolan had a busy day today! I am sad because it looked like such a beautiful day here and I didn't get outside. Tomorrow I am going to try to make it a point to get out and get some of this spring-like, fresh air! I love that is lighter later, however this morning was hard for me to get out of bed.

I got into Nolan's room around 8 am and he had already had his weekly EKG. He was unclothed except for a diaper, so I decided to give him a bath. In the middle of that, technicians stopped by to do his weekly echocaridogram. He did amazing during it! After that, he took his first nap. To prepare for life outside of the hospital, today I have been keeping track of his sleep patterns so I can see what the trend is during the day and the nurses can give me an idea of what he is like at night. I have tried to keep him up, but he just fell asleep (he was exhausted). I actually rocked him...might have been the first time I have done that since this started. Before I sat down I was holding him like a normal baby and I had a flashback. Here I was, holding him...I am not scared for his life, actually very hopeful and excited...and I was HOLDING him. I hugged him and told him I waited so long for this moment.

After his morning nap, I got his play mat out and put together on the ground. Then I got him down on the floor to play and he let out a few big throw ups. (blah!) In the middle of that, one of our transplant doctors, Dr. Lal, came in and chatted with me about our weekly plan. We are gearing towards a Thursday discharge. Hopefully all goes well until then. After our chat, the physical therapists came in to play and work with Nolan. He had a really good session. His trunk control is getting so much stronger and he is really doing well rolling and has signs of trying to figure out how to crawl. He also works real hard at trying to hold his self up with his knees/legs. In time, we'll get there!

After PT, I thought it would best for him to relax. I put him in his mamaRoo. (It's a swing....pretty amazing! http://www.4moms.com/mamaroo) He just hung out in there while I did some work, and he ended up getting a second nap in. Poor guy was then woken up because they had to change his picc line dressing (which should be coming out soon!!) Shortly after that, occupational and speech therapy came by. I attempted to feed him a bottle, which he seemed a little more interested than in the past, and I swear he sucked a few times and actually took in some milk. So, that is exciting! We also fed him some bananas, which he did OK with. He has some of his teeth in, so they think it may be good for him to try some foods that he can feed himself and dissolve easily, like Mum-mums. So, we may try that out this week.

That was Nolan's day! This is definitely a bittersweet week. Nurses are coming by throughout the day to send us their well-wishes and get one last snuggle with Nolan. We do build a great relationship with many of the staff members, some who we will see in the future (like our transplant doctors), but some of the nurses we may not. We will always try to come by and say hi - but I do hope they all know how much we appreciate what they have done for Nolan and let them know we could have not done this without them! (and, of course our PTs, OTs and speech therapists!)

More tomorrow!

#nhos

Last Weekend at CHP (Hopefully!)

Another nice weekend comes to an end. Nolan is doing so well, I have just been enjoying every moment with him! He is so awake and happy. We have come so far. I went down to the CICU last night to visit Ollie (who is doing well) and that was the first I have been back there since Nolan left after transplant. Being there brought back those feelings we had while in the CICU and made me see how far we have come. Our journey as inpatient at CHP is soon coming to an end.

An update on that!

We will NOT be discharged tomorrow. Nolan is currently receiving a 6 week course of antibiotics via IV, and he only has 4 more days left. With that said, Dr. Miller (one of our transplant physicians) thinks it would be best for us to just stay here until that is complete. The infusions are every 6 hours, it's another piece of equipment we would have to go home with and he has to get his antirejection levels checked daily because of the antibiotics (I think), so it just makes sense for us to stay until Wednesday. We are OK with it and if we wanted to leave they would have let us. I agree with Dr. Miller in that leaving towards the end of next week will make our lives easier. He may get his picc line removed soon after the antibiotic course is complete!

SO - I have a few more days to prep for Nolan to be released. I will clean the apartment, go shopping for food so I don't have to worry about leaving, set up his med regimen and get some good SLEEP. We are SO close to going home, I can't believe it. BUT, I have to keep my eye on today and not get too ahead of myself.

Matt and I had a really nice weekend. Friday night we had an amazing dinner at Eleven. It was the first time that just the two of us have been out to a nice restaurant for awhile. We kind of felt like it was a celebratory meal. Saturday I spent the entire day with Nolan. He was seriously up for most of the day. He is starting to take about 2 naps a day - that is it! They have weaned off most of the sedation meds, so he is definitely more alert. I am trying to take notice to his sleep patterns so I can try to get him on a decent schedule. (HA!)

Overall, a weekend with no complaints! Only one is that I miss Riley dearly. The day that all four of us are together OUTSIDE of this hospital will be a day I will never forget.

#nhos
http://amybrinkphotography.pixieset.com/nolanchp/

Monday = Discharge Day! (Message from Matt)

Happy Friday everyone!  Matt ghost writing for Cori tonight.  Cori got to Pittsburgh this evening to find a very happy and active Nolan.  He has had a wonderful few days and continues to make improvements towards his developmental milestones.  Eating and mobility are both progressing in short order.  Nolan sits several hours a day in his bumbo or with a little support from mom or dad.  He also has remastered the art of rolling and can get himself from his back to his belly.  Once there he is working on the sequential skills necessary to crawl.  He pulls both knees and elbows underneath himself and looks up.  I don't think it will be long until he builds the strength up necessary to begin moving around.  It's all very exciting to see him turning back into a normal baby. 

Next week marks our scheduled discharge date to the Ronald McDonald house.  Nolan and mom are planning to head over Monday evening with support from Grandma Everett later in the week.  We feel confident with the medicine regimen and the equipment that is necessary for the move.  Should all go well Nolan will get his third biopsy on Tuesday, March 18 after which we may begin the planning necessary to return home.  It's hard to believe that it has been half of a year since this journey started.  I'm tempted to begin getting excited at the potential to reunite our family as well as our friends and family.  That said we continue to try our best to focus on each day and the challenges that we come upon. 

Best wishes to all.  We can't wait to be back with all you in what potentially is the near future.  Nolan is drifting off to sleep and I think Cori and I will sneak out for a late dinner.  At the risk of sounding redundant my sincere thanks to everyone that has helped our family to weather this storm.  It has been the most challenging time in our lives, and I don't know how we would have managed without our friends and family.

Matt

Sliding Downhill Into The Weekend

Another day spent on 8a. Nolan had another great day. Matt said that he is physically made a vast improvement since last week. He rocked today during physical therapy. They had him work on tummy time, which they had to wait on up until now to help heal is sternum. Matt said he was rolling really well and he seems to be trying to get to his knees and pushing with his arms. I can't even IMAGINE what it would be like to see him crawling! When I close my eyes I can picture Nolan running around at the cabin with his shirt off, showing off that scar...playing in the creek. I can't wait for that day.

 

Matt said that he didn't do as well in speech therapy today, but he thinks because he was worn out and just not interested. He did only throw up 2 times today, so the changes they have made to his medicines and feeds seem to be going well. Preliminary MRI results came back from cardiology and radiology and they said everything looks the same as it did in the past. We should know for sure by tomorrow after we talk to neurology, but I am optimistic that everything is OK. I believe he will stay on the Keppra for preventative measures (anti-seizure medications) for awhile. On other medicine news, by March 14 he should be completely off ALL sedation medications! The weaning plan that has been given to us seems to be going very well, so that is three meds off the list! No talk about when they plan to discharge him. I believe they want to observe him for a few more days to make sure the GI situation is under control.

Back in Muncy we had a pretty good day. Tonight Riley and I went to Becky Shaner's house to have dinner and let the kids play. We are so blessed to be able to see our kids grow up together! Riley is finally at the age where she can keep up and "play." I LOVE to watch it. I think her and Everett (their son, almost 4) will be causing some problems in the future. :)

Tomorrow is Thursday! So far I have had a good week at home and with Riley. Yes, still sleeping in my bed. This is going to be a bad trend to break! I just can't make her upset right now. Makes me too sad!

#nhos

Waiting For Results

My first correspondence with Matt this morning was via text. He told me that Nolan slept through the night a total of 8 hours! We both think his belly must be feeling better since he didn't wake or throw up all night. In fact, I am pretty sure he only threw up once today. They did stop feeding him for some time because he had to be sedated for the MRI, but still, I think we are on our way. Between stopping the CellCept (anti-rejection med) and replacing it with a new one, and using the erythromycin for the gastric emptying, he seems to be less nauseated and more comfortable. They did replace his CellCept with a new medication (not sure which one); so, throughout life he will be on Prograf and the replacement for CellCept, which I will find out what its name is!

Nolan had a busy day, so it was a good thing he got some sleep! He had his MRI this afternoon to check on the seizure-like activity and to get a final view of his brain since he has had 3 strokes. When he returned, he had speech and occupational therapy. Amazingly, he ate 12 cc's of oatmeal! That is the most he has ever had in one setting! They played with the bottle, too. He seems to enjoy it more as a teething ring rather than a bottle...but, we are getting there. I believe he also had physical therapy, so needless to say, he is going to be a tired boy through the night.

Overall, Matt says that this was probably one of Nolan's best day yet. I am so happy to hear that. I am hoping that we should know more about discharged be the end of the week so I can start planning. Things on the home-front are good. Just busy at work, which is a good think...and the same goes for at home. I am longing to get back into a routine (morning workout, work, home, dinner, play with kids, bed...); But when we get there, it is going to be so weird!

Well, I hate to cut this short, but I have some heavy lids! Riley is still in my bed. This is going to be a tough habit to break.

#nhos

MRI Delayed

Not too much to report today. Nolan's MRI was rescheduled until tomorrow at noon due to issues scheduling with anesthesia. He will have to be sedated for the MRI, so I imagine we will be in the hospital until at least Thursday. Once I hear he is being discharged, I will make my way back to Pittsburgh (if before Friday). As for now, I am trying to stay focused on being productive at work and home. The minute I unpack, I repack. It is exhausting. I am so excited for this to be over and all of us to be home. But, then reality hits me knowing that this won't be "over." We have at least a year or more of therapy - and a lifetime of medicines and worry. I am sure we will acclimate to all of this, but coming into it for the first time is overwhelming and scary. But, I know Matt and I will make a great team - along with our family and friends.

Matt didn't report too much on the day since it was pretty quiet. He did have physical and speech therapy. The word is that he had a nice throw up for the PT, however, that was the only one of the day! (So I have heard!) The doctors did start him on erythromycin to help aid with the gastric emptying, which should help decrease the throwing up. Also over the weekend they adjusted his Cell-cept, an anti-rejection medicine that can cause nausea. Hopefully these two adjustments will help him out. He has lost some weight, so they are just hoping to maintain where he is at and continue to increase he weight accordingly.

So, it's already the month of March. Tomorrow will mark the 5th month that we have been at Children's Hospital of Pittsburgh. I still have a tough time accepting that this is real life. I know we will learn and our new life will become the norm. I am still SO incredibly amazing at the support we have received during these past 5 1/2 months. I loved every minute of the benefit two Sundays ago because I got to see so many of my friends and family - and meet many new friends that have been following and praying for us during our journey. I hope you ALL know how loved and comforted we feel because of all of you. I have moments where a thought punches me in the gut and I immediately shed tears. But, I remind myself how lucky we are to have a strong support system who will never let us fall no matter what happens in life. We are so blessed.

I HOPE I have news as to what our near future holds. We are trying to wait patiently to close the inpatient chapter of our lives and begin our new life on the outside. So many adjustments to be made, so much to learn...but also so many new memories to make. I can't wait to look around and have Matt, Riley and Nolan all in the same room, outside of a hospital. It's the little things that mean so much!

#nhos

Oscar Night

Back in Muncy, in my bed, my Riley Roo to my left and the Oscars on TV. I am sorry to Matt because I promised that I would start making Riley sleep in her bed. This is going to be something that will be hard to
break. How can I say no to her?

We were missed by the snow storm, which speaking for LOTS of people, I think we are all very happy about that! I do think I will head back to Pittsburgh this week if Nolan gets discharged so Matt and I can work together for the first few days on how we will care for Nolan outside of the hospital. Tomorrow Nolan is scheduled to get an MRI. We should also know more about how we are going to handle his GI issues. Hopefully by the end of the day we will have an idea of when we will be discharged.

Nolan had a good day. I think neurologically speaking he is doing well. He was still having some throw ups here and there, but I do think a little better. He is just a happy baby. We had a nice visit from my sister. I am thankful that she has taken the time to come see us so much in Pittsburgh. Riley and Nolan have a good auntie!

I am going to cut it short tonight. I will have a lot of news tomorrow. I am too distracted by the Oscars. :) I hope everyone had a good weekend - and stay tune for pictures from our photo shoot over the weekend!

#nhos

Picture Day

After having a tough week, today was a nice day. I got to spend it with my sister, Matt and Nolan; and a few visitors from home: Amber and Kaleb Roudabush (and their son, Kayden) and Amy and Wes Brink (and their daughter, Lucy and friend, Kelly). So, it was a packed house (but fun!)

Amber and Kaleb came to obviously see Nolan (ha!), but also to drop off stuffed bears made for each patient in the cardiac unit (8a and CICU). Kaleb is the Wellness Coordinator at The Williamsport Home, which is a retirement community with independent apartments and a licensed, skilled nursing and rehab therapy center. He gave the retirees an activity to make these bears in honor of Nolan Heart of Steel. How amazing! They are adorable, too. Thank you so much, Williamsport Home. Again, LOVE my community! From young to old, so much love for our baby boy. Thank you, Kaleb and Amber. Oh, and Amber is due in May with her second baby...it's a boy! We can't wait to meet him...in MAY. :)

Amy and Wes came so Amy could use her amazing photography skills and take some pictures of Nolan. We had a fun time jumping around, trying to amuse Nolan. Wait - we had a fun time watching AMY jumping around, trying to amuse Nolan...HA! It made me smile :) I can't wait to show of the beautiful photos. I got some inspiration from other heart mom's and included Nolan's Beads of Courage. Every time
Nolan goes through a procedure, has an X-ray, is overnight in the hospital...anything medical, he receives a bead. This is to show him later in life how courageous he was during every stage of his hospital stay. It is a great program and fun for the whole family!

Nolan had a great day. He is doing well. We should know more Monday where we stand on being discharged. I am debating on whether or not to stay for a couple reasons. One, we may be discharged early in the week, and two, snow storm! My sister may be stuck here, too!

Well, I am off to go watch the Pens play the Blackhawks! I hope you all have a great Saturday night!

PS: Have I ever mentioned how lucky I feel to have such amazing friends and family? Well - I am a lucky girl!

#nhos