When it is...... what it is.....

So we are 3 weeks and 3 days out from Cam's open heart surgery. Three weeks. Looking back I'm still unsure as to how we got here. I know that by God's grace alone is how I'm still standing. I know that we have so much to be grateful for, and trust me we are so very grateful, but I am so weary. I feel like I still can't breath. Like the air in the room is sufficient, but there isn't enough to take a nice deep breath. Why do I feel this way you ask? I don't really know.  Honestly, I have nothing but praises to report as far as Cameron is concerned. We had a follow up with his cardiologist last Tuesday, and he said Cameron looks good. We will need to go back for an echo and another exam in about two weeks, but other than that he thought Cameron had once again kicked heart surgeries ass! I am in awe of my child. He hasn't skipped a beat, and here I am still struggling to move on. I'll get there. I'll find my big girl panties, and I'll put them on. I'll regain my footing. I just wish I never had to loose it again because of Apert Syndrome. Or anything really. I hate when life feels unsettling. And this could quite possibly be just something I am facing. Quite honestly I'm not in the best place in my life. I am not as happy as I want to be. I'm not as happy as I usually am. My life just isn't where I want it to be right now and I'm frustrated and sad about it. Like I said before, it will get better..... I'm an optimist, and even in times of pure sadness I am hopeful, but for now I'm sad. Just sad.

To add to my sadness, yesterday a mother I met while we were impatient at Boston Children's Hospital had to say goodbye to her precious little girl. Her daughter Kendall was no stranger to the hospital, she even had one of those rooms in the Cardiac ICU that loudly stated that she had been a long term visitor. She loved mini mouse and that was made clear by the abundance of mini decorations covering her room... it was a sea of pink in there and always a room I looked forward to walking by while Cam and I were walking around the unit. Kendall's mother Nicole and I met New Years Eve, she and I rang in the new year together over hospital food and conversation down in the lobby. We both must have screamed a look of exhaustion and in the midst of the universe and God working like it does we started talking to each other. She introduced me to a condition I hadn't heard of before called Pulmonary Vein Stenosis. This horrific disease, combined with her daughters other diagnosis of pulmonary hypertension, took her life two nights ago. How fucking unfair is that? She just died. She was fine(and by fine, I mean in the way of how kids with those diagnoses are) and then she wasn't. I remember her mom messaging me Thursday morning. She said Kendall had a fever and wasn't breathing great. I asked her if they thought she might have a virus, and she said she had no idea. She said she was just worried that Kendall was heading toward intubation, and that she was very scared and sad. I was in prayer for her all day that day. I was so sad for my friend. I was so sad for her daughter. I was so upset that I couldn't do a damn thing about any of it. I never thought however I would wake up the next morning to a message saying she had gone to Jesus. Just like that. What the FUCK? I am sad, but her mother, her incredibly brave, beautiful, strong mother, she is broken. She was robbed of her most precious possession, and I have no idea how deeply and horrifically debilitating that must be. All I know is that I prayed for Kendall and I prayed for her to have a better day, and that didn't happen. At least in the sense that I was praying for it to. I have seen her mother post multiple things on Facebook regarding her daughters death, and yesterday she posted that she was tired of people telling her that this was God's plan and that Kendall is in a better place. If you have said that to someone who has lost a child, don't ever say it again. And if you don't know what else to say, then say NOTHING!!!  If you read this Nicole, I love you. I am so grateful that I got to meet you and I'm so grateful we got to meet Kendall. You are one incredible mother, and Kendall was one incredible kid.


This isn't my first rodeo of watching a friend loose a child. Unfortunately one of the downsides of having a child with multiple medical issues, means meeting other kids with multiple medical issues and somewhere along the way you develop friendships with other parents and sometimes you or the other parent has to say goodbye to their child. It's the nature of the beast on this journey. So Paul and I have met several other families whose children have died. It's traumatizing each and every time. When a child in the Apert community dies, it's like the air is sucked out of the room, and no matter where you are you quickly find your child  and you helicopter parent them for the next several weeks, because you know that the child that just died, whether from a surgery complication, or because of an underlying health issue, that child could have been yours. In some weird way that child is yours. Last year a sweet precious baby girl died with Apert Syndrome. Our families had met in Boston when they traveled there for her hand surgery. We had a nice lunch with them and one other Apert family. There was no weirdness, we didn't have to search for conversation, because in a weird way we already knew each other. We are family. When another child with Apert Syndrome is born it's like adding another member to your family. We are connected, and it's truly beautiful. When this sweet angel passed away last year I cried for days. But I wasn't the only one. The sadness across our community was felt, and it was so heartbreaking. I remember sleeping in Cameron's room for a week just because I knew as sure as the sun shines that it could have been Cam. It could have been any of our kids. It's not fair. It's haunting. But it is what it is. It's something you face everyday when you have a medically complex child. It's always back there, on your mind, even though mostly buried reminding you that you are not immune. I realize it is that way for children with no medical issues as well, because we have no idea what the future holds, but when you are living every single day in a world where your child has a medical condition and good amount of your friends have children with medical needs it becomes a little more in your face! It's Life. It's life for us.

God was good to us in Boston. Prayers from friends, family, strangers, churches, they were truly felt. I remember the night before Cam's surgery I was having an unusually rough time. Breathing heavy, feeling a little out of control, and I reached out. I texted several of my close girlfriends and asked for some serious prayers for peace. I didn't know what else to do. I certainly wasn't praying and feeling anything differently and I knew I couldn't loose my cool, because I didn't want to be confined to an insane asylum on the day of my kids heart surgery, so I reached out. I asked this group of girls to pray for some serious peace. To reach out to God and beg him to help me breath. I was so confined to my fears that I just couldn't take in anything other than hate. The response was almost immediate. My beautiful friend Sharla claimed it. She told me that peace was coming my way. That I was about to feel it. That I would be feeling it. She saved me. Several other friends responded too. They let me know that they were praying and that peace would find me. They assured me that they loved me and they loved Cam and that everything was going to be ok. I wept. Then for two whole hours I fell asleep. I felt peace. God was good to us. Cameron's surgery was successful. His recovery was smooth. We were prayed for and we were loved. I don't know why that doesn't happen for everyone. I know it can't. I know that life isn't fair in that way, but I struggle to understand it all. Especially when it's one of our own, or a close friend. It's hard. Life is hard.

This is such a dark post, and I apologize for that. I swore that when I started to write this I would stay raw, I wanted to be authentic so that if there was a chance that someone read this that needed to hear what I felt, I wouldn't have held back. Sometimes that means dark and morbid. Sometimes life is dark and morbid. If it isn't for you, then consider yourself truly lucky! I am grateful that my life is my life. Sometimes I'm sad. Sometimes I am angry. Sometimes I struggle. Realistically I'm glad I understand my feelings  because I think that is what keeps my emotions from becoming an issue! I feel that I was by whatever measure meant for this life. I was beautifully created to withstand the trials and tribulations that I face. Sometimes I want a different life. Most times I'm so very, very grateful for Every. Single. Thing, that I am and that I have.

3 weeks! Soon the boys will be able to go back to school, and soon Spring will be here. I'm hoping for a more enthusiastic 4 week post! In the mean time please keep my friend Nicole in your prayers. Thank you for all of your love and support for our family. We sure are blessed to have all of you.

Love,
P, J, C, and M

When it's all said and done

Man, time really does fly...whatever that means..... My last post was exactly 4 days before we set out on this second heart surgery journey. Since then it's been three weeks. Three weeks is a really long time when every single minute of every single day takes forever. But we are home now. We made it home Friday, and it was such a wonderful moment. I want to give you guys a brief synopsis of what our trip entailed so hang in their because even though I used the word brief..... this trip was anything but that!

Starting out- So Monday, 12/22 we loaded our rental car and headed North.... however before our trip truly began we made a pit stop at the NICU where our sweet friends had been raising money for us by raffling off two awesome baskets. They sold tickets for the baskets and wanted Cameron and Max to each choose the winning tickets. So we stopped there and the boys got some sweet loving, and then they drew the winning tickets. They awarded us with the donations which was over $1,000! To say that my incredible NICU family is awesome is an understatement. They are all so wonderful and they have hearts unlike any group of folks I've ever met! I'm so glad I am a part of such a wonderful group of people!!! You all know who you are and I am so blessed an amazed at your incredible love for our family!

So after that, we got started on our 14 hour trek up north! The boys were so great! They didn't complain too much and we made it all the way to Delaware(about 7.5 hours in) before we really needed to stop and let them get out for the night. The next morning we got up and started our day around 9 am. When we learned Cam would need this surgery again and that we were going to drive, Paul suggested that we could drive through NYC, since thats somewhere I've always wanted to go, but have never had the chance. So of course I thought that was a great idea. So he routed our trip so that the second day we would be able to drive through the Big Apple! We ended up getting to New York City around noon, and decided that we would get lunch and see some of the sights and then continue on our way. We ended up seeing the Statue of Liberty, and then parking near Rockefeller Center and walking down to see the Christmas Tree! It was beautiful. Because of our extreme need to keep the boys well before Cam's surgery we couldn't really go into any stores, but seeing the sights was honestly really awesome for me, so it wasn't too disappointing. We drove through Times Square, and by the Empire State Building, so I really got to see a lot of the city! It was a silver lining in a trip that had me an emotional wreck!

The only downside to detouring to view the city was the traffic trying to get out of there! It took us 3 hours to go 30 miles once we left New York, and traveled into Connecticut.... fun fact about Connecticut.....TRAFFIC IS HORRENDOUS......ALL. THE. TIME!!! So we ended up not getting to the house we were staying at until late Tuesday night. Still I really loved viewing the city and so we weren't too upset about the ridiculously awful rest of the trip! Haha!

Once we made it to West Bridgewater(which is where we stayed over Christmas) we put the boys to bed and we were all out! Then the next morning Cam and I had to be at Children's Hospital Boston by 6 am..... which meant we had to be out the door of the place we were staying by 5 am...... super early!!! So on Christmas Eve morning we headed out the door and to the hospital for pre-op we went. We started our slew of tests by 7:15 and finally by 1:00 we were finished and heading out the door. During our time there Cameron had to have a chest x-ray, echo, EKG, blood work, a physical exam, and we had to meet with the slew of doctors/anesthesiologist/ and nurses that would be assisting us during the upcoming surgical week. It was a long day, but at the end of it Cameron was cleared for his heart Cath and his Open Heart Surgery. Gulp!

We spent Christmas Eve eating at Chili's and watching Frozen together for the first time. I really never thought I would have to worry about Frozen being a big deal in my house, but boy was I wrong. It is now Max's favorite movie, and he loves anything and everything that has to do with Anna, Elsa, or Olaf! That movie has magic I tell ya! Anyway, Christmas eve went by fast and soon it was Christmas morning. So many people have made the saddest faces when I told them we would be spending Christmas in Boston. And for a bit I was like that too... but then I realized there was no need to be upset about something so insignificant. So what we spent Christmas in Boston.... we were together.... we were safe, and we were able to celebrate Christ's birth. Then that evening we were invited to Paul's brothers boyfriends families home(say that five times fast), and it was so lovely. We had a wonderful Christmas day.

The weekend leading up to the Monday of Cam's cath is a blur. All my fears and anxieties increased and I really had a hard time staying positive. But like time always does, the weekend passed and we were at the hospital Monday morning waiting for Camerons heart Cath to start. Paul stayed with Max and I took Cam...No surprise there...my control issues are bad when we aren't dealing with major surgery, add this stress to it and I'm pretty out of control! Cam's cath got started around 9. They updated me twice, once saying all was well, and the other around 11:30 telling me that everything was done and that they were waking him up. It was a huge relief to know that he had done well during this cath, and for what I knew he was extubated and in recovery. I later learned that while he was extubated, they had accidentally overdosed him on anti-nausea meds which makes you very, very sleepy, and so they had to place something called an LMA in his mouth to help hold his tongue down so that he could breath. I will spare you the details of the next hour, but I will say that I will gladly live the rest of my life in thanks as long as I don't have to see my kid in that condition again. It was brutal. However, in true Cameron fashion he finally started to wake up enough to breath on his own, and from there was fine. Because of his breathing stunt we got a ticket to the Cardiac ICU for the night, but things could have been worse, so I didn't complain!

The day after his Cath we got moved to the step down unit on the regular cardiac floor where we were to await his surgery scheduled for Wednesday. This was the hardest day for me, by far. My dear sweet, incredible friend Chelsea who is one of the most selfless people I know, flew up to Boston on this day so that she could watch Max for us on the day of Cam's surgery so that we wouldn't have to worry about him during that time. She flew into town Tuesday night, and she will never know how much her generosity meant to us.....You are so awesome Chelsea....and we love you very, very, much!!

WEDNESDAY...12/31/2014....Surgery Day.
Cam was 2nd case.....that was horrible. That meant they weren't going to take him back until after lunch. That meant that I would have to sit and cry for hours until it was time to go.....it's something I will try to avoid at all cost for any future surgeries....It was torture! Finally at 12 pm they came to tell us that they were ready for him in surgery holding area. So I carried my sweet prince to the place where they take your child out of your arms and into a room where they literally hold their heart in their hands. It's exhausting writing about it.....it's excruciating living it. We got down to the holding area, and they gave Cam the pink juice that helps him not cry when they have to take him away....I kept begging them to give it to me too.....but something about hospital policy kept that from transpiring. Paul and I kissed and prayed over and snuggled our sweet boy. We told him how brave he was, how incredibly strong he was, and we told him how we are the most proud parents in the world to get to be his mom and dad. We shed our tears, kissed his cheeks, and then just like that they were carrying him down the hall. There is no way to accurately describe that moment, unless you have been there. It's not the type of fear that is elicited from a horror film, but it's pretty similar, in that you can't breath, can't move, can't run, you just stand, motionless and watch your entire life flash before you, and then get carried away. Its awful, and if you haven't had to send your kid for open heart surgery, consider yourself incredibly blessed!

For the next seven hours Paul and I sat in the waiting room with his brother and his brothers boyfriend. We sat and we talked and we cried and we waited. We waited on the edge of our seats for the updates that would and still do send chills up my spine. The one where they told me they were putting him on the heart lung machine....something about knowing your child's heart is no longer beating on its own is a sickening feeling that I wouldn't wish on even my worst enemy. The update where they are taking him off the bypass machine...also something I wouldn't wish on my worst enemy. Then the update where the Doctor comes out and tells you that the surgery went great. That he was able to remove the obstruction, and that there were no complications. HALLELUJAH!!! Then comes the wait....the most agonizing part of the entire process, waiting to see your child after surgery. Sometimes it takes 30 minutes, but most of the time it's over an hour. The longest hour of my life!

Finally around 7:30 pm, Paul and I were allowed to go back to see Cameron in the ICU. It was the most beautifully sad moment. Seeing him intubated, attached to so many, many wires and tubes. It's not something any parent should have to bear witness to, but something that so many have to face every day. It's very scary, but Cameron looked good considering. All his numbers were good, and his nurse was on top of his med changes. It's an exact science at that hospital. One of the reasons we bend heaven and earth to get Cameron there. They are just so wonderful, like a well oiled machine. They anticipate things before they happen, and they have no hesitation in telling you what is going to happen. That's why they are number 1! Anyway....Cameron was pretty snowed in the ICU, so paul went home to be with Max, and I stayed and sat and prayed, and cried, and sat. Eventually around 11:30 I decided that if I was going to function I needed to put something in my body so I walked down to the restaurant in the hospital. I got a cup of soup and sat down. There was another mom that I recognized from the CICU sitting down there as well, so I introduced myself and we started chatting. Her daughter is 3 and suffers from something called pulmonary vein stenosis, so she is treated at Children's Hospital often, and her mother is one of the most incredible people I have ever met! We rang in the new year together and then headed back up to be by our babies sides.

DAY AFTER SURGERY
The day after surgery was pretty eventful. Cameron started waking up and becoming more and more agitated. It's an awful sight to bear, but it showed how incredibly strong he is! Around noon they decided to take his breathing tube out. That went well, and not even two minutes after that taking place he was begging for water! My sweet, sweet boy! The rest of that day we battled pain and anxiety and movement issues, but by that night they had given him water and he was much more consolable.

Day 2
We were still in the ICU, and because of the lack of patients they had no immediate need to move us to the floor, so we hung our there most of the day. They also took out Camerons pacing wires and his chest tube. That was the best day, because from there on out it was cuddle central!

Day 3
We moved to the floor. The 8th floor at Childrens Hospital Boston is specifically the HEART FLOOR. The kids on this floor are recovering from heart surgery, waiting for heart surgery, suffer from heart ailments, or have recently been diagnosed with a heart condition requiring hospitalization. All hearts, All day long! Usually you are in a room with another person, but this time we were able to get a room all to ourselves....which was AMAZING. At this point Cameron is now walking a little and is feeling more like playing and moving around. He no longer needed his oxygen during the day, so he had minimal requirements as far as staying in his room. So we took lots of walks. We walked down to the entrance, where they have a gigantic, beautiful fish tank filled with awesome fish, and they also have this really cool interactive board that is motion activated and is really cool! We would walk around the floor and go to the playroom. We met some new friends, and played a lot of trucks and cars! Cameron was doing great, so I was doing great!

Days 4 and 5, are a blur....over the weekend Cameron did very well so they said we could get discharged Monday as long as his echo looked good. So after his echo came back clear, we got our discharge papers and headed out the door.....however, later that night, as Elliott luck would have it, Cam spiked a really high fever. So I called the on call service and was told to bring him to the Emergency Room. After a battery of tests and one very painful urine collection later, they decided everything looked good and that it was likely an inflammatory response from the surgery. But in the way of playing it safe they decided they would keep us one more day. So we spent Tuesday in the hospital again. Then Wednesday they decided that Cameron was more than ready to hit the door, so they discharged us again....and that time it was for good!!!

Last Thursday we packed our car and headed home. Eight days after Open Heart Surgery. It took us two days and all the patience that we own, but by Friday night we made it back. HOME sweet HOME! This was a long journey. It was beyond stressful, and I'm pretty sure I'll need to see a therapist for awhile, but Cameron is good. Praises to our Lord, he is good. His heart was fixed, and for now its healthy and happy. He is healthy and happy. We still have recovery to overcome, and he still can't be in large crowds or go to school for several weeks, but we will get there....He will get there! We have his first cardiology appointment here at home tomorrow, so keep those prayers coming for a good report!!

For all of you that prayed for us, that supported us, that bought a t-shirt, that gave money, that gave love. THANK YOU!!! We are so very grateful for your love and prayers you sent to us during this experience. We sure did need them, and they sure were heard! We are always in awe of the kindness of our friends and family, and especially so to those that we have never met, but that love us anyway. We will never have enough words to describe our gratitude, but we hope you know how much you all mean to us, and how much it means to us that you love our sweet boy so very much. He is one pretty amazing kid, and we are so incredibly proud to be his parents.

Please forgive any and all typos that you notice in this blog update. I have sausage fingers and at some point I give up on trying to fix every single typing error!!
WE love all of you, and we hope you find many blessings in this new year!!

love,
p, j, c, and m