Surgery.

I want warn those who read this, this post and the next will be VERY heavy and I put some pictures of baby girl that are extremely vulnerable. At least I feel they are. I want to put them because its real life, its her life. And if you really think about it, it's actually really amazing.

Anyway, moving on to the story. The next few days after she was admitted were just a waiting game. Unfortunately she was admitted on memorial day weekend so the doctors were MIA. They were around if there was an emergency but thankfully Brighton wasn't considered one. Shaun and I's days were filled by meeting with the doctors, running back and forth from the hotel, and trying to get little Carters temp under control. My little brother Caden even took a little bit of a detour to be there for Brighton and just stop in to say hi. I have never felt so lucky to have the family I do until that weekend. I still can't believe how everyone sprung into action to be here for little sis. We spent a lot of time meeting with the cardiologist and doing research on the surgeons and the hospital in general. We obviously wanted Brighton to be in the best hands she could be for this surgery so we were even talking about transferring her to Boston. We decided that Atlanta was the right place for Brighton and moved forward with planning and understanding her surgery. Since it was memorial day weekend the doctors were going to come in that Tuesday and have a discussion about what they thought was the best course of action. Things like exactly what surgery they should do, should they fix everything at once, and make sure they totally understood what they were going to see when they opened her up. The plan was for her to have surgery on Wednesday or Thursday after the doctors got together.

Since the surgery was a few days away our family all headed back home to get back to their own responsibilities. Everyone but my dad left, He stayed to help us get through the surgery and more or less be there to help make sure we weren't missing something, especially since Shaun's and I heads were still spinning. About 2 hours after we sent everyone home we got a call from a surgeon saying Brighton was to go into surgery the next morning. WHAT?! We thought we had 3 or 4 days to prepare for this! We rushed to the hospital to sit down with one of the attendings and talked about what exactly was going to happen the next morning. I remember sitting with him trying my best to not go numb... to keep my brain sharp and to really listen. My mind kept wandering off into random what if's which is a really scary place to go when it comes to something like this! Lucky Shaun and my dad were more on point and were asking all the right questions. Once we got everything squared away we went back to the hotel and tried to get some sleep.

That night Shaun and I said a prayer and begged that Brighton would be ok. We begged that she would be strong and that the surgery would go well. I can honestly say that no prayer has every been that hard or scary to say. I now know what it feels like to truly turn everything to Gods hands and to trust in his plan. I knew that it was all his will and that either way that was what was going to happen but I was hoping like crazy that his will was that Brighton would be ok.

The next morning we woke up and rushed to the hospital. Before they took her back we had a few minutes to hold her. Those minutes were so scary. She was going in for a major surgery that was really complex. The doctor was literally using his hands and tweezers to re-plum Brighton's strawberry size heart. She would be ok, She had to be ok.

The nurses and surgical team came to Brighton's stall and told us it was time. I laid our little girl on the bed and Shaun and I along with my parents walked her to the doors or the OR. They put down the side of her crib and told me to kiss her and say "see you later".  I bent down and kissed her on the head and felt her little hand wrap around my finger. I was a mess. I wanted to grab her off the bed and run as far from those doors as I could get. I wanted to be anywhere but there. I unwrapped her finger and kissed her one more time then turned around feeling like I was about to fall. But Shaun was there and wrapped his arms around me and held me up. He then passed me off to my dad so he could kiss Brighton as well and we all stood there sobbing as they pushed her through the doors. The next 8 hours were going to be the longest hours of my life, of our lives.

Every hour a nurse from the room would call the waiting room and the secretary would yell out the last name of the patient. From there a family member would go grab the phone and get an update. I knew they wouldn't call and tell us over the phone is something bad happened but I would still tense up and literally hold my breath each time Shaun went and answered it. I would stare at his face the whole time he was on with them trying to read into what was being said. If you know Shaun you know he's about as cool headed as it gets so reading into his facial expressions or body language never got me far. He was really good to always give me a nod to say things were good and I would take a deep breath. It was a really good thing my parents were there, they were a great distraction. We talked about horses, looked and ranches my dad wanted to buy, and they even talked us into going and eating.  Although the 8 hours were long it actually went by really fast. Until the last hour.

All thought out that day my stomach was churning and really starting to get to me, when they called to tell us Brighton was done, and that the surgeon was on his way out to talk to us I felt even worse. I went to the bathroom right away and tried to prepare myself for whatever we were about to be told. I so hoped that the surgeon would say it went absolutely perfect but I knew there was always a chance, and I was so scared of that chance.

We all walked into this little room and in walked the surgeon who looked like he had just been through the ringer. You could tell he was tired and worn. He looked like he needed a dang good nap after that. Can't blame him, he literally just spent the last 6 hours moving things around that were the size of pen tips and some were even smaller than a piece of hair! It amazing that he was able to do it! He told us everything went well and that the next 24 hours were extremely crucial. If she made it past that we could all breath a little easier.  He also told us that he left her chest cavity open and that he would reassess and close her in a couple days. It's extremely common for that to happen, since the body and heart become so swollen it puts to much pressure to try and close the chest cavity. Because of this they wait few days for the swelling to go down and then the surgeon comes back and actually does the procedure right in the CICU.

Since it takes awhile for them to get Brighton settled back in the CICU we decided to grab dinner. We went to a favorite little spot of ours. I was still feeling pretty sick so most of my time out was spent back in the bathroom, but the food did taste good so it wasn't a total loss. We grabbed a Popsicle to go and headed back to see our little miss.

Very different

The last couple weeks have been hard. A different kind of hard from the first time around, though. The stress is very different. Last time we were truly scared to death, she was going in for a huge surgery and we literally had no idea if she would be ok. This time I'm not worried about her dying at any minute and its very obvious that she's actually feeling pretty good! But this stress is more of a draining prolonged type stress. Hospitals are depressing as it is, add sick children to the mix and it is almost unbearable. I absolutely hate seeing all of these sick little ones around us and my stomach literally turns upside down when I see some that look so worn and fragile. It's not fair. These kids should be out playing and running. 

There's also a odd relationship you start to gain with the other parents. We can almost say everything with one glance. Today I was out in the garden area giving Brighton a little fresh air and looked up to see a mom and dad pushing their little boy who was probably 5 or 6 in a wheel chair. It was very obvious he was fighting cancer. I gave a quick smile to him the looked at his parents and it's as if we both said "I'm sorry, I get it." In one look. It happens with every parent I pass, I can tell they are saying it to me and I'm sure the feel the same way too. I'm part of the long term hospital crew now and I get it. I get the stress, the worry, the fear. I just get it. 

I've asked a few nurses how they can stand to work in a place that is so depressing. How they can stand to see such innocent children suffer and one told me that I have to learn to look at it different. Rather than seeing all the negative and all the sadness I had to see the positivity the children have, the light they shine, and allow myself to see it as an inspiring thing. That really hit me. I need to change me! These kids are suffering, they fighting things a lot of adults don't have to endure but they rarely complain or get down about it. They are happy and are making the best of the situation. I need to be like them. I am no where near that way of thinking yet, but I'll get there. I know one day I'll see the beauty in it and I know that I am growing every day. The problems or things I use to stress about seem so comical now, almost embarrassing. I have truly  been changed by thing experience and I know I will only continue to change. And I'm so thankful. My world has been re-centered and I am so thankful for that. Brighton has been the most life changing thing that has happened to me. I've become a much better mom, wife, and hopefully all around person because of her. I needed that little girl in my life right now and although this hard, scary and draining. It's been the best thing that has ever happened to me. I love my little ones, they truly are my everything! 

I'm working on writing everything down that has happened so far is Brighton's life. Hopefully I'll be all caught up soon.  

Day 1: The diagnosis.

Oh little Brighton how she has changed us. Lets start from the beginning shall we?

Shaun and I always said we wanted to have our kids close together so when we were pregnant with Carter we knew that #2 wouldn't be far behind. A few months later we were pregnant again and I was actually excited! I knew what to expect a little more and felt like it was going to be MUCH easier to take on, at least not as scary. Of course it would be wild having 2 kids only 14 months apart but I felt that if #2 didn't have the horrible reflux we would be able to handle it all just fine.

Then came the day for Brighton to come. Earlier in the day I started to feel contractions and they just seemed different. About 3 that morning I decided that I should probably call my doctor. The contractions weren't close together but they were consistent and were starting to hurt. I woke Shaun up, packed a bag, took a shower and we headed in. 5 hours later Brighton was here! My labor/delivery has shown to be pretty easy. This time I literally pushed once then my body just took over from there. It was weird. Brighton was perfect, she has a full head of hair, weighed 7 lb 2 oz and was 19 inches long. Oh and she was 3 weeks early, can you imagine if I went the full 40 weeks? YIKES. There must have been something off with my due date.

Shaun and I were sooooo in love. I called my mom right away to bring Carter and seeing them together was amazing. I had 2 kids! 2 awesome kids. My mom took Carter home and Shaun and I settled in for the night. That night was great Brighton would whine  a little when she was hungry so I would nurse her and then moments later she would be asleep. She also nursed PERFECTLY... total opposite of Carter. The next morning we woke up and started to talk about if we wanted to go home that day or not. I was healing great, Brighton was doing awesome so we figured we might as well get out of there!

At 24 hours old the hospital will run a few tests and one of those is the pulse-ox test. Its a brand new test and its only offered/required in a few states in the country. Carter had the same test done last year and we found that the machines that they use to run them are quite finicky. It took them a couple tries but eventually Carter passed and we were sent home.

This time was different. Brighton failed, and failed, and failed. I brushed it off chalking it up to the machines but the nurse was persistent and said she wanted to get the right score right away.  Now that I look back on it I realize how nervous that nurse actually was, she knew what was going on. She took Brighton to the NICU to get another test done and I decided I would take a nap and Shaun would run to check on Carter (who had a 104 fever) while we had the break. About an hour later I woke up to realize the Brighton wasn't back. I went to grab the phone to call the NICU and just as I was dialing in walked the nurse, a unfamiliar doctor and my OB. My heart sunk. Some thing was wrong. I could tell. They asked where Shaun was and told me that it would be best if they came back. Of course there was no way I could let them just leave with out telling me what was going on! The nurse sat behind me and my OB to my side and the unfamiliar guy pulled out a bunch of pictures with a cartoon like heart. "Brighton has a very significant heart defect" those are literally the only words I remember. I know he drew a bunch of things explaining what was going on but I wasn't processing anything. I then remember the nurse saying I'll rush Sydnee's discharge papers so she can go. I was confused because I couldn't remember what they had said about going anywhere.  Come to find out the doctor had already called the Children's hospital telling them to send the life flight. We were only 30 miles away from the Children's hospital so the fact that we needed a helicopter really showed how scary the situation was. They left the room and I called Shaun doing my best to tell him what had just happened. I sat in the room for a little while just trying to process what they said. They kept telling me Brighton is in Critical condition but she is stable. Once Shaun got to the hospital we went down to the NICU and had everything explained. During that time the doctors decided that the Helicopter wasn't necessary but she still needed the angel team ASAP, its just that the ambulance would be enough.

While we were signing papers Shaun and I decided Carter needed to go to the doctor since his fever was so bad and wasn't breaking with Tylenol or Ibuprofen. We learned quickly how to divide and conquer. We decided I would stay with Brighton and Shaun would take care of Carter. I can honestly say I have never been so stressed in my life. You know how people say that when things are bad they can feel things crashing around them? Well its true I literally felt like there was people surrounding me dropping glass bottles to shatter at my feet. Now that I say that its sounds very dramatic but I remember truly feeling that way. Carter was sick, Carter was stressed, Brighton was sick, Brighton was really sick, Brighton was about to have surgery, and Shaun and I couldn't even be together to deal with it all. It was intense, and scary. I remember calling my dad and the only thing I could get out was "its bad" within minutes he had everyone on a plane headed towards us. I remember feeling so overwhelmed that when he told me he was coming I literally about fell, It felt so good to know that Shaun and I's parents were on there way and were going to help sort everything out and get us through it. We weren't alone.

Once Shaun left I had a few moments to sit and snuggle Brighton. It was really weird to see her hooked up to so many cords when not even an hour before I thought she was completely normal and ready to go home. A few moments later a nurse popped her head in and said the angel team was there and ready to start the transfer. I will never forget how comical it was to see them walking in. They walked in like they were S.W.A.T and were VERY confident in their abilities to say the least. They were bad-a and they walked the walk and talked the talk. I loved it, it was great to have a little humor in my world. Once they got all the lines transferred over they stuck Brighton in a little blue box and we headed out to the transport truck. I watched them load her in the back then took my seat up in front. The ride down to the children's hospital was actually really therapeutic. For the first time that day I had absolutely no distractions and I was able to think and process everything. By the time we got to the hospital I felt like I could understand what the doctors were saying and understood the situation much better. I even started to remember the terms the doctors were using!

When we got to the children's hospital everything felt different. I understood what was going on and you could tell that the nurses, doctors and staff were all very comfortable with Brighton. She was just another patient and even though its sad to say I was so glad to see how they treated her as if it was no big deal. Heart defect and critical condition weren't scary words for them and it was nice, for once that day I felt calm. The room was weird however, since it was the Cardiac Intensive Care Unit or CICU everything was open the babies had stalls rather than rooms. There are a few rooms in the unit but those are reserved for the older children who are aware and need privacy. For Brighton she just had a little spot and the nurse sat at the end of it keeping a watchful eye on her at all times. The nurses were only assigned one patient and at a time so they never were far away. We weren't able to sleep at the hospital but we were able to stay as long as we would like, if our eyes were open. I waited for Shaun to come down after taking care of Carter. Turns out that the fever was rising for the poor boy and we were told that if it wasn't gone with in 3 days he needed to be taken to the Emergency Department, which didn't help calm my anxiety as your can imagine. Either way Shaun came down to the hospital and we finally had a minute to talk about everything that had just happened in our world. I think that night we ended up going to bed around 3 am.  That night I remember laying down and just begging for some type of comfort, for something to feel OK but I never did. I couldn't calm my fears but I could sleep and that was a blessing. Moving forward I would like to make this blog a journal for Shaun and I. Which means you may see some very vulnerable stuff pop up now and then. Its going to be quite the journey with this little one, but I know we can do it. She can do it. She is stronger than I am and I'm so proud of her. She truly is my hero.