Today I Didn't Fail

#momlife can be crazy wild. I'm not even going to pretend i'm the busiest mom out there. I mean, I only have 2 kids! Yes, the are a little close in age, but i've seen worse. But today.... whoa.
every mom has those days where they crawl into bed and think "welp, that sucked" but today I crawl into bed and think "........." I'm blank, I'm fried.

Today started out great, the kids slept till 8! This never happens, my kids were blessed with Shaun's morning person personality and are ready to rip and 6:30am. Anyway, we got up I played with Brighton for a few then heard carter starting to chat in his room. I threw on my sweats the headed in to get him. He was in a great mood. jumping like a wild man in his crib and reaching out to give Brighton kisses and hugs over and over. These are the mornings I like, they usually mean its going to be an awesome day. THHHHHEEEENNN it happened.

Brighton went from giggly to hysterical in 1.2 seconds. I went and picked her up off the floor and realized her head was burning up. She has had a fever for a couple days. I went into grab the tylenol where i left it... gone. I searched and searched and searched. Gone. Now Carter was crying. I left him in his crib. No cool mom. I went and pulled him out with my free arm and headed down stairs to try and find the tylenol. Brighton was livid now. I went to put carter on the couch, no go he wanted to be held. I started to get aggravated with him. "Carter, your fine. Just sit here for a minute" I set him down and he starts to run giggling and squealing. ha, you bipolar child. I finally find the tylenol give it to Brighton and start to bounce a little to calm her down. After a few minutes I grab a bottle, turn on a cartoon for carter and feed Brighton. We're good, that type of stuff happens daily. I text Shaun who's on his way to the airport to tell him that Brighton still has a fever. We decided we better take her in. I call the doctor and set up an appointment for later that day. Because i called while I was holding Brighton she is now awake again and hysterical. I decide to go up to the room and rock her. I turn on another episode for Carter and head up to her room. 20 minutes pass and she's still screaming. finally after 45 minutes she falls asleep and i put her in her crib. I walk down stairs look at the clock and realize i still haven't got Carter breakfast. He's now following me around the kitchen whining telling me he wants food. I throw a muffin and some milk on his tray to hold him over while i make some pancakes. Just as I start I  hear Brighton crying again.  I throw Carter another muffin and head up to check on her. She had a blow out. SIIICCCKK. I clean her up go back down stair and realize i hadn't changed Carters diaper yet today. He now was covered in pee from overflow. I change his diaper turn on another show, refill the bottle and head up stairs to comfort Brighton again.

The day goes on and more of the same pattern happens, Brighton is miserable...Carter gets neglected
Finally Brighton is under control and sleeping so i head down to play with carter. We run around out side and roll around in the dying grass. He was covered and thought it was so funny. I then get a call that i needed to take Brighton in right away. She has a UTI (we spent some time in the hospital earlier to get her looked at) and  she needed to be treated right away or it could spread to her heart. So I go get dressed, get the kids dressed and we head into see our pediatrician. He's an awesome man who takes SUCH good care of my kiddos. He truly cares and its so so nice. He come is tells me about the infection the says "we also are going to need to have more tests" uhh ok... why? He then draws me the anatomy and tells me about how Brighton's may be a little messed up. Because she has CHD it is extremely common for them to have other conditions as well. So far things have checked out good but whenever a problem arises we have to look at it in every which way to make sure its not more serious. Thats the thing with my kiddo, normally they give little girls a shot and send them on their way, the UTI clears up and no one thinks a thing about it. Brighton is different, we have to consider if she needs to be admitted so we can make sure the UTI doesn't spread to the heart. Today the "team" (cardiologist, surgeon, infection disease, and her pediatrician) decided she could be monitored from home. Thank goodness. But now i'm stressed. We ended up being at the pediatrician office for 3 hours talking about all that was going on and giving her the antibiotic, checking her blood pressure and watching her carefully for a bad reaction. Were then sent on our way and I head strait to Walmart to get her prescription . while there i make a couple calls while we wait for the prescription, 7:30 rolls around and I finally have her prescription. We head out to the truck  and I load up the kids, Brighton is screaming so I make her a bottle and prop it up on a blanket while I get Carter in his seat. Carter sees the bottle and started bawling. I again, get frustrated put him in his seat and he becomes hysterical. I ask whats wrong and he tell me he's hungry. My heart sinks. Its 7:45 (past bedtime) and Carter hasn't had lunch or dinner! And all he had for breakfast was 2 chocolate muffins. I'm so sorry buddy. I load them up and run to arby's to get him some chicken fingers and me some mozzarella sticks.

We rush home and I run in to set up Carters dinner before I get them both out of their seats. I open the bag and... they forgot the chicken fingers. I literally have no food and my little boy is starving. I throw some cheerios in a bowl notice his chair is filthy still from the muffins, I sit the bowl on the floor and run out to get him. After setting him on the floor with his lame dinner I run back out to get Brighton, who of course is crying. I walk back in to see my perfect little boy sitting on the floor eating his cereal in a house that is a disaster. My heat breaks as I think about how bad I failed him today. He got 5 minutes of attention and not much else. He sitting on the the kitchen floor alone, trying his hardest to fish cheerios out of a bowl. I sit down next to him and help him catch his food until he stopped asking for more. I then went up and rocked Brighton and left Carter to finish off what ever he had left. After Brighton was asleep I grabbed Carter and changed him for bed. While sitting on the floor I tell him how sorry I am. Today was a bad day. I'm so sorry you had to take care of yourself all day and your only one! I'm sorry we didn't play more and didn't hold you like you wanted. I'm sorry I failed you, tomorrow will be better. We stand up and I hold him and ask if he wants to say prayers. He folds his arms and I begin to say our nightly prayer. In the middle he wraps his arms around my neck and kisses me on the cheek then smiles. My broken heart and down spirit melt and I begin to tear up. He doesn't think I failed, he knows I did my best. He doesn't care that the house is a disaster and that he had cheerios for dinner. He got 5 minutes of my time running and playing today and it was great. He also got 3 hours of non stop attention from nurses who let him do what ever he wanted while I talked to the doctors about Brighton. He got to run around, pretend like he was an airplane and put on a show for all that watched. He also got to eat his favorite food for breakfast and dinner. He doesn't see today as a failure at all.  I didn't fail him.

Mom's we have some really rough days. Some days we go to bed beat up and wore out. Some days we feel like we completely failed. But we didn't. We did good. We probably even did really good. So our house is dirty, so our kids ate crap. Our kids are happy and healthy. And most importantly they are loved. It may have not been my best day today but I did pretty good.

Point is, stop thinking about all the things your "failing" at each day. C
hances are you doing freaking awesome. Chances are your nailing this whole mom gig.

Modern Day Miracles

First off, let me say that I am a member of the church of Jesus Christ of Latter Day Saints (LDS)  and one of the blessings of being an LDS member is to have access to the power of the priesthood. You don't have to be a member to partake of the blessing but, you do have to be a worthy man in order to perform priesthood blessings. You can read in James 5:14-15 "(14) Is any sick among you? Let him call for the elder of the church; and let them pray over him, anointing him with oil in the name of the lord. (15) And the prayer of faith shall save the sick, and the lord shall raise him up; and if he have committed sins they shall be forgiven him."

There are multiple areas of the priesthood but the one that is extremely close to my heart is the power to heal.

Growing up I didn't always believe in God, or in the LDS teachings. In fact, for a long time I did everything I could to not take any part in it. But my dad was a great example to me, and one of the ways he was an example was to be willing and worthy to provide priesthood blessings.  I dont remember much about the day but I do remember that my grandpa had received some scary news about his health. He use to be a smoker and it looked like it had caught up to him. He isn't a member of the LDS church butI  remember him coming to my house and my dad taking him into the office asking if he believed in the power of god, and that he could be healed, and if so would be be willing to receive a priesthood blessing.  He must have said yes because a family friend came by and I watched him and my dad offer a blessing by placing their hand on his head. A few days later my dad sat us down to tell us that the mass the doctors had previously found had disappeared since the week prior. I was young and tried to play it off as a "no big deal" situation but I thought about it often, and obviously still do.

The next experience I had with the priesthood that made an impact on my life was when I had to have my tonsils out. It wasn't a big deal, but I was still nervous. My older brother had just returned from his 2 year mission and came home from college to be there so he and my dad could give me a blessing before the surgery. I remember we were at the hospital my dad came to me and said "were going to give you a blessing". That was it, it wasn't do you want a blessing it was, you will have a blessing.  I remember thinking about how that showed how much my dad trusted in its healing power. It was also something that brought me closer to my older brother. It was simple, it was minor, but it meant the world to my simple unbelieving heart.

Fast forward 10 years and a lot of growing up, I decided that I personally do believe in the gospel and that I DO believe in priesthood power. And the last 4 months, my love for the Priesthood has grown more than I could have ever imagined.

Brighton came along and then came the diagnosis. With things looking so grim we were really worried about what the outcome would be. Shaun went to visit a friend and he mentioned that we needed to give Brighton a name and a blessing, something that is typically done months after the child is born. I hated that we were doing that as an "in case she doesn't make it", but I knew he was right. Brighton needed it. The exact same day I was sitting down with my younger brother at the hospital explaining everything and he stopped me mid sentence and said "Syd, you need to have Shaun give her a blessing. I know she will be ok if you do" I almost cried. My little brother was showing me up, and thinking of things I hadn't. Why hadn't I thought to ask for Brighton to be blessed? Since she was in the ICU they have very strict rules to how many people can be at her bedside at a time. Luckily we had a great nurse who did everything she could to make it happen for us. I walked in told her what we wanted to do and she immediately jumped into action going to the linen room to find the best blankets she could. I told her "oh its ok, you dont need to do that" and her response was, "I want her to have the best we have for her blessing, she needs to look perfect" Again... I cried. Thank you. Our bishop came down to the hospital and we took the crew in to the ICU. There was 10 of us (The ICU only allows 2 at a time)! We all crowded around her bed and Shaun and some of our family members laid their hands on their head and blessed her with the best blessing I have ever heard. "by the power of the priesthood.... we give a name and a blessing... the name which she will be called is Brighton Kay Allred". He then went on to bless her to heal well, that the surgeons hands would be steady. That she would have no residual issues after the surgery. After we all stood around her crying and talking about how beautiful she was. We all were so scared but we could feel the spirit in that curtained off area. Our heavenly father had her, he was going to take care of her. We asked for a specific blessing and thats all we had to do. He wants to give us the miracles, but we have to ask.

The next day Brighton came out from the surgery with out a hitch. Everything went perfect. And she was able to be closed 24 hours later, which is EXTREMELY rare. She then was discharged a week later on 1 medication!  That 1 medications was then weened off 2 weeks later. It truly is a miracle, and I KNOW its because of that priesthood blessing.

A few weeks later Brighton came down with a fever. We thought we might loose her. Things in the ER got really scary. The doctors were really worried. I asked Shaun to give her another blessing. We asked a member of our ward to come down to the hospital to do so with Shaun and simply put they blessed her to be healed. The next day her oxygen was normal and her heat rate was just fine. We found out about the infection but her heart was totally fine. Something we weren't so sure about the night before. The doctors were able to pinpoint the infection quickly and she become a baby we hadn't ever seen before. She was happy, bright eyed, and perfect.

3 weeks later, Brighton was sick again. And they couldn't find the cause. EVERYTHING pointed to bacterial meningitis. We were devastated. She was getting worse and Shaun was out of town, so I asked 2 members of our ward (church congregation" to come down to give Brighton, yet again another healing blessing. They came down right away. The next morning we decided to do a lumbar puncture, and waited patiently for the results. While waiting I noticed Brighton was acting hungry, I gave her a bottle and for the first time in 3 days, she ate! She ate ALOT! I then took her temp and it was gone. I figured that the nurse must have gave her Tylenol that I didn't notice but, she hadn't! I told the doctors and they came in to take a look. Obviously they were extremely pleased, and the one doctor said. "I dont think i'm going to even look at the results, she is obviously just fine!" Of course they looked and like he thought, she was fine!

I know that modern day miracles are true. My little girl is a living, breathing miracle. I am so so thankful to Shaun and the other family members and ward members who hold their priesthood at a high priority and are worthy to give those blessing to Brighton. I know without a doubt that things wouldn't have gone near as smoothly or perfect with out the priesthood power. My baby girl is ahead of the game in her physical development and her heart is so good she is only being seen every 4 months! To have this perfect of an outcome with her complicated situation is truly the most amazing blessing and miracle I could have ever asked for.

I believe with everything I have that the healing power of the priesthood is true. Just like Jesus healed the blind, and fed the multitude, the priesthood has been restored on this earth. Because of this, our baby girl is here, healthy, and beating every odd. She is my miracle.

A real NORMAL update!

So its been awhile... a long while since I updated everyone of the happenings of our family!

We are all doing great!

Shaun is working like a crazy man. Its been a really rough year on him as far as the stress of work goes. He is the Marketing Manager for Hay equipment which is AGCO's top products. And he feels the pressure. He's finally getting the hang of it (thanks Dean) and feels much more comfortable. He is back to traveling and usually is home Friday then heads back out Sunday or Monday. Needless to day, Saturday is our FAVORITE day.  But he does enjoy it most of the time  so we dont complain. Even though he's gone and pulling crazy hours when he is here, I love seeing him happy about work. At work he is launching a few new products and gets (or in his opinion has to, with complete disgust) to do interviews to announce them to the media. I recorded one interview... see HERE.



For me, i'm just running this chaos crazed house. Mostly its the choas of Carter. People thought I was crazy for intentionally having my kids only 13 months apart but I absolutely love it! I love how busy it is, how things can go from calm and collected to all hell breaking loose in a matter of seconds. It might not be the best parenting tactic but I secretly love when they both randomly start crying together. What the heck? It makes no sense, and I find it all pretty funny. Something I  learned while in the hospital is to savor every minute you get to spend with the kiddos. Being apart from them was the hardest thing. So now, my house is a lot messier than I would like and we dont eat the most gourmet meals, but I am playing and rolling around with Carter on the floor all day, snuggling Brighton every chance I get and literally thanking heaven above that i have the opportunity to be home,  to have them both with me at all times! Its the best!


Carter. Gosh we love this kid. He has started to finally say a few words, his favorite is no. or NO NO NO.  I think he's actually trying to say Oh No but getting a little hung up. He also says dad (dada) mom (mam), Baby (brighton), Bye (baba), eyes(eyes) nose (nose) and wait for it..... TRACTOR! He loves to climb, run away, and do the hokey pokey. Every morning when I get him out of his crib he puts his finger to his lip and blows out, like you do when when you say shhhh. This is his way of saying where's Brighton? We then walk into the room and he squeals as if he hasn't seen her for years, usually causing her to jump off the bed in fear. Especially since most of the time she is asleep. He LOVES his sister. He wants to hold her all day and walks up every couple minutes to kiss her on the head. I've had to work with him on being soft but he's actually picking it up pretty fast. He does really good with her. Other than dragging her by her feet, flipping her over, or bending her legs up so she does a back roll.... like I said, he's doing great. Ha.  Carter is also our fish. He jumps in the water with no fear and drinks gallons of water since he's dunking his face in so much. We's been working on teaching him to swim and he needs a little work on those arm motions but he will kick like a mad man. Surprised? Me either. Those legs never stop moving.

Brighton... baby Brighton. Is doing good too. We are watching her close because she has a rash that just wont go away. Normally thats not a big deal but with cardio babies EVERYTHING is a big deal. Other than that weird thing she is rocking this life thing. She is only the tiniest bit behind physically so we only have to go once a month. She is suppose to still do feeding and speech therapy but the speech... I dont get. 4 months folks, not much speech going on. So we need to talk about that one a little more. The feeding therapy I think is just a precaution in case she has another surgery soon.  She has started to roll and I think its all thanks to Carter. Hes always pushing her on to her sides and that forces her to work those muscles. The surgeon was really excited when he found out we had Carter. He said that since they are so close in age she will pretty much have a rope tied to her forcing her to move forward progress. Its true she is forced thats for sure. We also hit the month mark of being home! I have a weird perception of time when it comes to Brighton. I think because we were were in the hospital so much I still see her as a newborn. I kind of worry I'm holding her back a little because I dont expect her to do the things that are developmentally appropriate for her age. I was shocked at PT the other day when he said we need to start working toward  her eating solid foods, and sitting up this next month. I also was super excited that she was laughing, I was telling a friend that is crazy she is already, she is way ahead in that way.... then she said "wait isn't she 4 months old?" ha..... riiiight.... I forgot.  Overall she is doing GREAT!

A sad thing, we gave away our Toby Joe :( :( With everything that happened and the unknowns of the future we didn't feel we could take care of him like he would like/ demand. when things were wild I didn't miss the psycho one bit not now, I'm feeling it. My puppy! But the good news is we gave him to our neighbors and members of our ward so they let me take him anytime I want. She came over the other day and said, we dont want to hog Toby so we thought you might like some time with him! Right now were in a joint custody situation ;)

We cant begin to tell you how thankful we are for all your love and support the last few months. I received notes from people I haven't talked to in years, and sometimes never met at all wishing us well. Going though the last few months with out all of you would have been MUCH MUCH harder. I am so thankful that we had a village standing behind us when we needed it most. You had our backs, and we are so glad! THANK YOU!

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.