It will work.

Looking back on the last year everything makes more sense. Things happen for a reason, I now have absolutely no doubt in that.

Throughout Brighton's pregnancy I have felt a little uneasy. I felt like something was wrong, but I had no idea what it was. When I was pregnant with Carter I was scared of delivering a baby and sometimes the anxiety would keep me up. One night I remember praying asking for comfort, and got a calming, comforting feeling that everything would be ok. I was going to be ok. With this last pregnancy I felt the same anxious feeling and again started to pray when my brain wouldn't shut off at night. This time all I could get was "it will work out" I remember hearing those words and my anxiety shooting through the roof. What does that mean? Am I going to die?!?! My kids, and Shaun? Why does that sound like a " warning"?  I tried not to think to much of it because well, I felt dramatic but every time I thought about the baby inside me I could feel that feeling of something being off. Nothing specific, just off.

I decided to start to prepare for the worst,  I even signed us up for life insurance policies... just in case. It was crazy, I felt crazy. I tried to hint to Shaun every once in awhile that something seemed wrong and try to some how prepare him. But how do you say that?

Then the chance to move came up. But oddly enough I NEVER felt like we would actually do it. I was excited that we might be. I so wanted to move back west and to buy a home in the country and maybe finally have a horse again but it just never seemed real. Then when Shaun called me about the new offer I knew that we would be staying. Thats just what felt right. I never once felt bad about staying or bummed, which was weird since i'm not a huge fan of this place. Staying felt right, I didn't feel like it was our time.

Then fast forward 6 months to when I  decided my mom needed to come help since I was feeling so sick and had no energy to take care of Carter or get anything done for the baby or around the house. She came a month before I was due and the plan was to have her help before the baby and the other family members would help when little one came. BUT then Brighton came early. The day my mom was suppose to fly home. In my opinion, not a coincidence.

Because my mom was there she was able to take care of Carter while the rest of us handled the whirlwind Brighton brought with her. And because we decided not to move we were able to take Brighton to a hospital that happened to have a surgeon who specialized in Brighton's specific defect. and because I had been warned and I was told that "it will work out" I felt more prepared and had a little more hope.

Thus, when things dont make sense hold on, answers or coming. I promise you that. Things don't always makes sense, and its really scary to feel like your wandering through the dark. But your not. Its the plan, always has been. Just keep going,  it will work out.

It's been amazing.

I know that from the last few posts it may seem like our world is completely shattered. And honestly, it was. The last few months have been very hard but we are ok! 

We have SO many blessings in our life, we have 2 perfect kiddos who we love more than anything. Carter is our little light who can take away all our stress with his giggles and jabber. He has been someone I have leaned on more times that I can count. He is a strong little guy and even though this has been wild for him, he hasn't shown it.  He adapts to all the new "babysitters" quickly and hadles Shaun and I being away for days at a time just fine. His little smile and giggle truly light up our worlds, as corny as that sounds. 

We have Brighton. Against the odds, she made it. She is healthy. She is whole. And she is PERFECT! She came to this world to shake us all up and refocus us. And that she did. She taught me more lessons the last few months than I have learned my entire life. She brought our family closer together.

We have our family, our family that spring into action. My mom who dropped everything both times I called and was here the next day. My dad who flew out the crew and was here literally hours after Brighton was diagnosed the stayed till he knew we were ok. Debbie who literally flew across the country 4 times in a week (2 times in one day!) so she could be there for Brighton and for her surgery. Shaun's mom has came both times with a one way ticket and has no plans on leaving until Brighton is in our home and I can finally be with both my kids at the same time! And every other family member who joined us in fast, prayers and lots of tears. We have them. They helped us, they kept us going. 

Then we have our friends we have made here in Georgia. They guys Shaun works with, especially his boss have been more then understanding. A friend of ours who also works closely with Shaun dropped every thing he had planned for Memorial Day weekend to go and run a big even Shaun had planned, because Brighton was having surgery. Our ward has given us more love and support than they could even imagine. They truly are our ward family and I'm not sure what we would do with out them! 

And we have each other. I have Shaun. Shaun held me up when I literally couldn't stand. He has been so in tune with my feelings and knows instantly when I'm about to fall of the edge. He has shown me how much I need him in my life and how lucky I am to have him over and over again. He has juggled a demanding job, a child in the hospital, and emotional wife and a wild toddler with such perfection I truly don't know how it's  been possible. We have grown closer together threw this, and reminded how truly blessed we are.

We are so lucky to have this in our lives. As much as I would give anything to take this burden from Brighton, I'm thankful for it. I truly am. The hardest 3 months of my life have also been some of the most rewarding.

Life is good folks, really hard, but really good. 

Round 2

Hello my dear family (and friends)!

Last week (Thursday) Brighton was admitted back into the hospital :(. That day things just seemed to be off with her and I noticed that she seemed to be really warm when I got home from the grocery store. I ended up searching all over the house for a thermometer and found that her temp was 102.8. My heart sunk. A fever was bad... really really bad. I started making calls to see what the doctors suggested and just like we thought they wanted B back to the hospital ASAP. They even offered to sent the Angel team again. Comforting right? She was ok so Shaun and I loaded her up, asked the neighbors to watch Carter, and we headed back down to the same hospital she had the surgery at. Sadly, I guess the only way for kids to get admitted is to do their time in the ER.  We walked in, they rushed us to a room and started tests right away. They did everything they could thing of, even did a lumbar puncture to make sure is wasn't meningitis! Sadly everything kept coming back negative but Brighton was actually starting to look worse and worse and after the lumbar puncture, she even stopped breathing! It was terrifying. Obviously the doctors didn't like that so finally 10 hours later she was moved back up the the CSU. The next day they found that the blood cultures they took were starting to grow bacteria which was pretty much a sure sign that her little heart had caught an infection.  They let the culture grow for a few more days and were able to narrow down exactly the strain and how strong it is. Because they were able to narrow it down so much they were able to pick a specific antibiotic that would attack it as best and fast as possible. Since then Brighton has been SO much better. She's awake a lot more, eats really well, and even makes cute little coo's that melts our hearts. Because she has a pretty intense bacteria, the doctors feel it would be best to stay here 6 weeks while the antibiotics run their course. Obviously it's slightly depressing, but honestly somewhat nice as well. I think having her home would be a little stressful. I would worry about the antibiotics and her IV's. Especially with wild man Carter around. He's very curious and very fast these days. I also like the idea of us going home with a healthy baby. Today Brighton had to have a little procedure done to put a central line in. Pretty much this is a permanent IV that runs from the back of her shoulder to the top of her heart. By having this she doesn't have to be hooked up to any wires and won't have to have any more blood draws!

To put the line in they put her completely under and even put in a breathing tube. I think they do this because its a pretty delicate procedure and they need her to be as still as possible. Taking her down was sort of hard but knowing that she was pretty much just getting an IV, I was able to hold back the tears. For once. Still sucked walking away, that never will get easy. She was down stairs for about 2 hours and when she came back I more or less ran to the hall and scooped her up. Its been nice this time around, there hasn't been really any restrictions on holding her or leaving the room and I'm loving it. From here on out we hopefully wont have anything more to report. It should be pretty boring and we are actually praying that it is. I wouldn't mind at all if I went crazy from the repetition. Slow and boring is a wonderful thing when it comes to hospital stays. Through all of this I cant begin to say how thankful I am for good, caring doctors. Everyone on Brighton/s case, the cardiologist that diagnosed her, her pediatrician, and the staff here at CHOA have been better than you can even imagine. Her pediatrician even made a trip down to come visit her and gave me his personal cell number! Amazing I tell ya!

Everyone has asked how we are doing and handling it all. And to be 100% honest, Its hard. Something weird though is that I feel like I've become numb to the stress, anxiety and fear. I've learned over the last few weeks that everything has to be taken moment by moment with Brighton and swallowed in tiny doses. Seeing my little girl go through so much is horrible and I would give anything to make it so no children had to endure this. Shaun and I have both have decided that there should be some earthly law that sickness doesn't apply to children under the age of 18. Being a parent to such a sick little kiddo is draining and its not fair that these little kiddos have to go through something like this! There's been a few days where I feel like I'm standing in a standoff with some imaginary cloud trying to take take my little girl from us. But we are winning. The doctors are behind us pulling their guns faster than the cloud and he is getting weaker and weaker. There has been so many scary days but there has also been some really amazing moments. Seeing Carter give his sister kisses and hugs, or hearing Shaun walk in  and say "hey sweet heart" brings so much happiness. I absolutely love having her here on this earth and having her be apart of our family.

Carter is also doing awesome. He's my favorite little buddy and always has us laughing. He's had to sacrifice a lot as well the last couple months and I know its not easy on him. Honestly thats probably the hardest part of all of this, not being able to be with both kiddos as much as I would like. But he's getting lots of attention from grandparents and we do our best to spend as much time with him as we can. Right now he is getting more and more wild as the days go on. He has found a new love of climbing and will scale our fridge, stove, and even the dining table. He is all about getting a rise out of people so he will run up and "scare you" then fall on the ground laughing when you scream or jump. He also does this funny thing where he arches his back and pushes out his belly. We cant help but laugh our head off when he does it. Why in the world he does some of the dorky things he does I will never know. But I love it. He's also started to understand us better and will respond with "ya" or  "uh" when he does and doesn't want something. Most of the time its "ya" no matter what so things can get quite confusing. His stories have also become quite elaborate and animated. He will lean forward with his fist out and turn bright red he gets so into them. Pretty much he is a BLAST to have around.


Thats it for the update as of now. I'll try to keep up on this more. Shaun and I both feel its a good way to journal this whole adventure so check back in periodically if your curious! Also, here is a few pictures as of late. We love you guys!

 

Recovery

Ok guys this is when its going to get really intense and the pictures are pretty hard to look at.

After we got back from dinner Shaun and I rushed to the CICU to see Brighton. Before the surgery we had been prepared on what we we would see. They explained that she would be extremely swollen because of how the body reacts to being put on the bypass machine and the trauma. They also told us to not be afraid of al the tubes and wires coming out of her. They did everything they could to prepare us, and even took us to see a baby that had just came out of surgery.  I remember standing over that baby and thinking "this isn't so bad". Oh you naive mind.

We walked in the room and went to the sink to washed up feeling like my stomach was full of concrete. We walked over to her stall and saw our beautiful baby girl. Only she looked nothing like our beautiful girl. She was so swollen and almost unrecognizable. I stood next next to her and stared, scared to touch her. I started to feel dizzy so I grabbed a chair and sat down. I touched her hand and her skin was so tight it almost felt like it might pop from the pressure. Then I looked under the cloth and I felt the panic attack come on. I told Shaun I was going to let Deb come in and more or less ran off the unit. When I stepped outside I felt like I couldn't breath. I blamed it all on peeking under the cloth to where you could see her heart but, it wasn't that. It was everything. I just needed a minute. Shaun came out and gave me hug asked if I was ok and I remember forcing myself to not cry. No more crying, my body cant take anymore.

We decided to run to the hotel to grab our things so we could stay the night in one of the "sleep pods" the hospital offers. Mostly I needed some time to regroup. I started to feel guilty that I lost it and that I just ran out on our little girl. She was completely helpless and in pain and I couldn't pull it together. We got back to the hotel and I sat on the bed and bawled... the ugly cant breath type cry. Shaun just held me and kept saying this is the bad part, it will get better. I so hoped so.

We got back to the hospital  put our stuff in the pod and said goodbye and thank you to my parents who were headed home the next morning. After they left we took a few minutes to truly pull it together. I had talked myself up enough that I felt like I had it. I stood up straighter and just overall felt stronger. I had this. I can be strong for her. No more running away.

We walked in and I noticed that there were a bunch of doctors standing around her and staring at the monitors. NOOOOO. As we walked to the stall they obviously could see my concern. They immediately started explaining things and I felt like they were talking waaayyy to slow. Get to the point guys, is she ok?  Her heart rate had started to race to really scary high pace. They gave her some type of medication to regulate it, but it wouldn't bring it down. They had just pushed more as we were walking over so now they were waiting to seeing if it would drop. Hence the monitor staring. Well it did. But only a little.  I kept looking back and forth between the doctors and the monitors. They were so calm, this was no big deal to them, how are they so calm? Soon the monitors started to ding and we saw her heart rate begin to increase. I almost lost it again. No running. You can do this Syd. Now I was glued to the monitors and could feel my chest get tighter and tighter with every beat Brighton's heart made. Then a doctor looked at me and obviously noticed how concerned I was His exact words were "please don't look at the monitors and worry. We will watch for you, that's what we are here for" I'm pretty sure I will never forget that, it changed everything for me. I learned in one sentence, to trust the doctors, to let them do their job. They weren't stressed about this because this WAS their job, this was just another day in the office.

That night we stayed up till 2 or 3 just staring at the monitors and trying to talk the nurses into covering her up with a blanket. (being cold makes the heart rate drop). The nurse that night was a cute little lady from Ireland that told us stories of Brighton beach in England. "its a beautiful beach, you picked a perfect name" Eventually she talked us into going to bed and so we did. I think I slept for a couple hours then woke up and wasn't going back to sleep. I got and went to Brighton's stall where I sat by her and tried to warm up her little body as much as I could switching from one hand to the foot to the others over and over.

The next few days were a blur, little by little her little body started to take over again and she stopped relying on medications and machines to keep her alive. Her heart rate dropped so they weened her off that medication. Her heart started beating on its own so they weened off her pacemaker. Seeing her progress was amazing. She was doing amazing. We were so happy.

The CICU is a really rough place. They actually dubbed it ICU Psychosis. Sadly 1-3 babies pass away weekly in the CICU and sadly, I experienced that a couple times. I started to feel guilty that Brighton was doing so well. It wasn't fair that I was happier and other families were still having such a rough go. The staff is really good to try and keep it away from the other parents and patients but because everything is so open, you see the chaos.  Each time I would look back to Brighton and just long to hold her, to see her wake up. I know one day I will have to go back into the ICU and I know its going to be extremely hard. Im pretty sure I have hospital PTSD... is that a thing? Yesterday (2 months later) I went into the ICU to pump in their room and felt sick to my stomach. Those poor families. Those poor babies. I then ran out and didn't ever make it to the pump room. Maaayybe later, or never that's fine too.

The next week is a blur now, I wish I wrote about it as we went but life was still a little too upside down then. I remember being moved to the CSU and feeling guilty that we were graduating. I felt horrible walking past the other families. I was jumping up and down inside but tried my best to not show it. When we got to the CSU I let my smile go and started asking over and over is i could hold her. The nurses were probably so annoyed. Finally they took out the last few wires which made it safe for me to hold Brighton! I remember scooping her up and taking a seat in a wooden rocking chair and feeling like I had no idea what to do. Do I just sit here? Is it safe to hold her for as long as I want? Can I move? She's so fragile!

Shaun and I took turns staying at the hospital and seeing Carter. When discharge day came around (a week later!) We were truly shocked and even tried to stall a little bit. Finally the staff literally told us we needed to go so we stuck Brighton in the car seat and headed for home. We were going home. 2 weeks later, 2 draining weeks later, 2 horrible weeks, but 2 blessing filled weeks later we were going home.