Life and Thoughts

WOW. I cannot believe its been nearly 10 months since I've last posted anything in my blog. What the what! Ha, and its definitely not like nothing has happened in the past year ! I think my New Year's goal this next year will be to post once a month. For a non-journal writer, I think that's a good goal for me.

Anyways. Life. Oh Nelly, life...

Sometimes I look over the past 18-months and wonder how on earth I'm still standing, still smiling, still laughing, and still living. That, my friends, in nothing short of a miracle. And, a miracle I'm incredibly grateful for. Some people call this "strength," but I'm not always too sure about that. I think this is more along the lines of survival. Survival for my family, survival for my kids, and survival for my myself. If I let everything between Carver and Tristan's birth defects take over my life, I'd turn into a giant puddle of jelly. As I type this long over-due blog post, I'm sitting in Tristan's hospital room, listening to a gently lullaby playing from the mobile over his bed. I look at him and see pure, unmitigated strength. This sweet little guy has been through so much in his short life, and he's endured so well. To me, he's the perfect example of enduring to the end. And, enduring cheerfully.

Award for "Happiest Baby Ever Despite Difficult Life Circumstances" goes to this guy! 

Carver's first birthday was this past April 21st. I had all these grand plans for us to drive far up a mountain in Provo Canyon, release balloons, and then have a picnic in his honor. I was SO excited for this. And then, Arlee got sick -- poor kid, she got really sick. So, I spent my angel baby's 1st birthday cleaning up puke and soothing a very miserable little girl. Heh, all in a day's work, right? Since we were visiting family in Rexburg a few days later, we instead decided to hike R Mountain (an old dormant volcano) a few miles from my inlaws home, release balloons, and then go out for ice cream. Well, as we were driving to R Mountain Arlee got violently sick. Again. I then had my first experience cleaning vomit out of a car seat... Needless to say, I was frustrated. Why was the universe against us doing something special for Carver's birthday?! Of course it wasn't Arlee's fault, but I couldn't help feeling frustrated at her for throwing up again as we were so close to the mountain. Well, third time's a charm, right? After going back to my inlaws home, cleaning up Arlee and the car, and putting Arlee down for some much needed R&R, Austin and I decided to just drive to Carver's grave to release the balloons. Even though this wasn't at all what I had originally planned, it turned out to be a really sweet experience. We each wrote a message to Carver on a balloon, laid down on the grass next to his little grave, and released the balloons. We watched the balloons float away until they were completely out of sight. It was a very tender experience and I could truly feel Carver there with us.

I struggle every day with the death of my son. No matter how many more children we have, you cannot replace the life of one child with the life of another. A part of my heart will always be with him, and I will not feel whole until we're reunited. My faith and belief in the Plan of Salvation is what brings me so much hope and peace. It really is the Plan of Happiness; I look forward to the time, which I know is decades and decades away, when I can be together with all my children in the Kingdom of Heaven. That will be a beautiful time. But, until then, I will cherish the children that I have here on Earth and look forward to the children that I know will join our family in the years to come. I've always yearned for a house full of laughter and the pitter-patter of lots of little feet.

Grief isn't something you just "get over;" its something you learn to live with. I may seem more like "Old Karen," before Carver came into our lives and forever changed our family, but that's simply because I'm learning how to live with my grief and I think its learning how to live with me. I still have my good days and my bad days and all the days in-between, but I'm getting better at listening to my own emotions and when I just need to step away for a bit.

Arlee and I have also been able to have lots of conversations about Carver and where he is. Her innocence and tender spirit is such a beautiful gift. Sometimes we'll just be driving around in the car while running errands, and she'll ask me what Heaven is like. I'll tell her that Heaven in a happy, peaceful place, where everyone wears white, you listen to beautiful music and choirs, and walk in wonderful gardens with lots of flowers and waterfalls. She'll then ask if Carver is happy, and every time I tell her that Carver is so happy and he's with people that love him. As I tell her this I've received the sweetest confirmations that of course Carver is happy and safe and in the best place possible. On more than one occasion I probably should have pulled over, because the silent tears of joy and comfort were too much to properly see the road clearly. I've had far too many tender experiences close to the Spirit to ever discount them as a mere coincidence or deny my faith. Heaven is real. It may not be a concrete place in the sky, but its real. I think its more real than any of use can comprehend.

My sweet parents and inlaws gave me this beautiful Greg Olsen painting, titled Take My Hand, for Christmas this past year.

I discovered this painting a few months after Carver passed away, and it spoke to my soul. To me, this painting is like looking into a glimpse of Heaven. With how Arlee looks, I'm pretty sure this is a good representation of how Carver would have looked around age 2-3. As I took the wrapping paper off this beautifully framed painting, I immediately started to cry. (For anyone who doesn't already know, I'm a crier.) I love it. Its hanging in our kitchen and I can see it from almost anywhere in the front half of our apartment -- I could look at this painting for hours. As silly as this may sound, I look at this beautiful painting and just feel peace knowing that my sweet little boy is in a safe, wonderful place, with people who love him. All a mother wants is to know is that her children are safe and loved.

I think its now time to talk about my gentle, adorable, and patient little man, Tristan. I think he was blessed with an incredibly calm and relaxed personality to help him get through all the obstacles he will have in his path in the coming months and years. Austin made the observation a few weeks ago that if it wasn't for his colostomy, this kid would hardly ever cry. Seriously. He's also developed an amazing pain tolerance with all the wafer/bag changes. I don't think any mom ever wants their baby to develop a pain tolerance...but I'm sure this will be a good thing to have as he soon starts to deal with the worst diaper rashes known to man. I've been told by many doctors and surgeons to brace myself... Yikes.

I'm not sure if many of you know this, but Tristan's Imperforate Anus (lack of bum hole) wasn't actually diagnosed when he was first born. In fact, he even passed the bum hole check test! I know...crazy! It wasn't until he wouldn't wake up, was spitting up way more than he had eaten, and then started spitting up stomach acid that the nurses agreed something might be wrong. When my nurse came into my room at 4am (because Tristan had been in the nursery for close observation due to these worrying symptoms) and told me that something was wrong and he was going to the NICU, my heart dropped into my stomach. I was terrified. The only other experience I'd had with the NICU was with Carver, which didn't lead to the happiest of endings. It took all my self-control to not jump to conclusions and start crying hysterically (that happened later...). The nurses thought that maybe there was a knot or a closure in his intestines, which could also cause all these other symptoms. Well, upon closer examination of his sweet little body, it was discovered that there was no bum hole! Over the course of the next several hours I was given more medical terms and information then I could mentally process and all I kept thinking was, "We have another child born with a birth defect... How is this possible??" I felt beyond overwhelmed and like I was going to suffocate from all the stress and worry.

Around 9:30am I was finally able to see him. I still wasn't walking very well, so I was wheeled up to the NICU in a wheelchair and wheeled down to his little bed. As soon as I saw him, I lost it. He looked exactly like Carver and was hooked up to all kinds of machines and IVs...just like Carver had been. I felt like I was experiencing everything with Carver all over again. I think the best word for my crying was 'hysterical.' Here was my sweet perfect 8lbs 3oz baby, and he was hooked up to everything (it seemed...) except life support. I have no idea what the doctors told us, because I was crying too hard and too hysterically. My sweet husband stood by my side the entire time and signed all the consent forms and listened to everything the doctors needed to tell us. I was so afraid of losing another baby and was convinced this was going to be exactly like Carver's experience. I'd had so many dreams during Tristan's pregnancy where he died right after birth and then the dream basically reenacted everything we went through after Carver's death. Needless to say...those dreams were so so so bad. And, here I was...thinking those dreams were all coming to life. The whirlwind of emotions I felt during this time were beyond overwhelming -- I felt like I was reliving a nightmare.

A few hours later, Tristan was whisked off to surgery to create his colostomy. Right before Tristan was taken to surgery, Austin and his brother, Redge, gave him a priesthood blessing. Austin blessed him to be safe and protected during the surgery and that the surgeons would have calm and steady hands. He also blessed Tristan that Carver would be with him during the entire surgery to help him feel calm and safe. We all felt the Holy Ghost so strongly when they ended the blessing. I know, without a shadow of a doubt, that Carver was by Tristan's side the entire time, and I know he has been with him during all the subsequent surgeries, too. Since no one in our family can physically be there with him during the surgeries, I'm glad Carver can be there for him. Haha, the perks of an angel brother. :)

Tristan's surgery went well and we were able to see him again a few hours later. By this point I was a little more in control of my emotions and not quite as hysterical. His little body, in the time the colostomy had been created and we joined him again in the NICU, had already released 3oz of stool. That is a ton! Poor little guy, his stomach must have hurt so much. Honestly, if it wasn't for modern medicine, this precious baby would have died a few days after he was born. When I hear statistics about how many babies used to die after childbirth, and then I think about my two sweet boys (both of which have had fixable birth defects -- except Carver's lack of lung tissue prevented his diaphragm from being fixed), no wonder so many babies died. :( Modern medicine is an amazing, life altering thing.

While we were with him post-surgery, one of the NICU's social workers came by to talk with us. I explained a little bit about why I'd been so hysterical earlier, and we talked about everything. (Keep in mind, it had only been 11 months since Carver's birth and death when Tristan was born.) This social worker pointed something out that I hadn't realized before..she thought I might be suffering from PTSD. It was really eye opening to hear this, and I completely agreed. Since that talk with the social worker, I've met with a grief therapist and looked more into this possible PTSD diagnosis. I don't have actual PTSD, but I do have PTSD-like symptoms. I wouldn't be surprised if everyone who's lost a child has PTSD to some extent. 

(Whoa, my hair has grown so much since this picture!)

Tristan defied the odds and was home from the hospital a whole week earlier than predicted. And, he's continued to defy the odds by having no additional birth defects and sphincter muscles. This baby is a champ. His first 24-hours home was probably the second hardest day of my life (with Carver's death taking first)... Oh man, it was bad. Learning how to take care of a colostomy, especially on a baby, is HARD. Like, really really really really really really really hard. The NICU nurses and Wound Care Team at Utah Valley Regional Medical Center tried their best to train me on colostomy care...but they really had no idea either. In those first 24-hours his wafer leaked 6 times. Yeah...6 times. It was BAD. Each time the wafer leaked, we'd have to take the whole thing off and put on a new one. Each time we'd take off the wafer, it would pull off skin. So his tender, sensitive skin was being pulled at over and over and over again. I could go on and on about how bad that first 24-hours were... Honestly, to an extent, I think it scarred me and Austin. Tristan was in so much pain and was screaming non-stop. It got so bad that we even had a home health care nurse come to our apartment at 11pm to help. And, bless her heart, she also couldn't get the wafers to stick. She tried twice, and the second wafer only lasted 3 hours... The next day I had an emotional breakdown at Tristan's pediatrician's office, and I don't think his pediatrician had previously cared for a child with a colostomy before -- because she was like a deer in the head lights. Austin's matra during all of this was, "Well, at least it can't get any worse. We've already hit rock bottom." And, he was right -- it only got easier from there.

Anyways. Let's fast forward... A wonderful, angelic, amazing Intermountain Home Health Care and Hospice Nurse came to our apartment and *properly* trained me on colostomy care. She was heaven sent. And, an old friend from my days as an employee at This Is The Place Heritage Park, who's second son also had a similar birth defect, became my emotional rock. Seeing how far she and her son had come gave me so much hope that Tristan and I would be okay. This wonderful friend, Charlene, even called insurance companies to get me free sample, brought me special swaddles that helped her change her son's colostomy, and tons of feel-good movies. And, you know what, we got through. We survived. I was in charge of colostomy care and Austin was in charge of holding up his (little but surprisingly mighty!) arms so I could do my thing. When Austin was at work and I needed help, I'd either bride Arlee with crazy amounts of praise, whip cream, and YouTube or I'd call upon a neighbor to come to my rescue. To everyone that's helped me in the past few months: THANK YOU! I couldn't have done it without you. Holding down his incredibly strong arms and legs and still attempting to clean/change the wafer and bag is pretty impossible by yourself.

We've come a long way in the past almost 7 months. Honestly, I can't imagine caring for Tristan and not having to work with a colostomy. Its gonna be kinda weird... Hahaha, now I'll be able to hold up his legs and clean that cute little bum without the help of at least one more person! How cool is that?! The hardest thing for me lately is just the fact that Tristan has had to deal with so much and there's nothing I can do about it. It breaks my mommy heart to see my baby in so much pain and agony and all I can do is try to soothe him...I can't take away the pain or the experience. So much of the time I just feel helpless.

Seriously people, don't take your kids' bum holes for granted. I know this sounds like an amusing thing to say, but I'm being completely serious. If Tristan's body had simply formed one more centimeter of intestine, none of this would have happened. One centimeter. Its crazy how such a small thing can make such a HUGE difference.

If you're still reading this blog post, KUDOS to you! :)

I had a really sweet experience today at the hospital -- well, this experience kinda started on Tuesday evening. On Tuesday evening I was in the kitchen of the Ronald McDonald Family Room in Primary Children's. I started talking to another mom and she told me that her 3-month-old baby boy was dying due to organ failure and would be leaving the hospital soon to pass away in hospice care. My heart absolutely broke for this mom. She told me, "Please don't think I'm not sad...I'm just out of tears." And, oh boy, did I understand that feeling. We sat and talked for a while and I told her all about Carver. She also told me that she has a 2-year-old little girl, and I told her that Arlee was also 2-years-old when Carver passed away. I told this sweet mom that her little daughter will give her a reason to live, a reason to get up in the morning, and a reason to keep on going. We hugged and cried together. Over and over she kept saying, "I'm so glad I ran into you tonight!" I bumped into her again the following night in the Family Room and she told me that her little guy had been baptized in the mini waterfall next to the hospital by a medicine man from her Shoshone tribe earlier that day. She then invited me to come by and meet her sweet baby the next day in the NICU. As I walked down the NICU hall this afternoon, I had all kinds of memories come back to me of when we toured the NICU before Carver was born...it was almost surreal. But, it was such a sweet experience meeting her baby boy. His liver and heart are failing, and he will slowly pass away on morphine so he doesn't feel any pain or pressure...just like Carver did. I met her whole family and gave her a few more hugs. Losing Carver was the hardest thing I've ever gone through, but when I meet another mom going through a similar experience, I'm so glad I can be there for them in a way no one else can. People can say to you, "I'm so sorry!", but when someone who's also lost a baby says "I'm so sorry!," it has a whole new meaning.

They left the hospital today at 5pm and took him off all his machines. I've been thinking about this sweet little family all day. I hope and pray they feel peace as he passes. I'm not exactly sure what the Shoshone tribe believes in terms of the afterlife, but this mom kept saying, "I hope my baby gets his wings!" Well, I'm positive he'll get his wings. :) 

Sometimes I wonder what Arlee thinks about everything that's happened lately. Maybe its totally normal to her. Or, maybe having a brother who poops through his stomach is kinda an odd thing. Who knows. But, what I do know is how much Arlee adores her brother. She's always talking to him, kissing him, hugging him, poking him in the face (which I do not approve of...), and playing with him. And, Tristan is equally obsessed with her. They're going to be the sweetest little buddies. Even though Tristan loves to smile, he doesn't laugh very much. However, Arlee can get him to laugh more than anyone else -- its pretty awesome.

These adorable kids make my life so full. I'm so grateful for the opportunity I have been given to be their mother. And, I just realized I've hardly talked about Arlee! Hahaha, oh man, where to begin...? She is SO full of life! ALL THE TIME! Never a dull moment with this girl around. She's always cracking me up with the crazy things she says. This girl really does hear everything we say and then files it away for future use -- which isn't always a good thing! She's a great helper and loves to help with everything from vacuuming to cooking to fetching me more paper towels and tissue boxes. She LOVES riding her tricycle outside, and really enjoys going on "adventures" where she looks for sticks, leaves, and rocks (which she likes to call sea shells). She is always ready to speak her mind and verbalizes her wants/needs super well. If Arlee needs something, she'll definitely let you know. ;) She loves watching Daniel Tiger (and sings all the songs, too!) and pretty much anything on PBS Kids, and is obsessed with Princess Play Doh videos on YouTube. Those videos get real old real fast... And, she could happily play with play doh all day long. She's getting pretty good at bargaining with us and she's perfecting her "sweet talking" skills. Arlee's also entered this not-so-fun stage of testing the limits...all the time. Some days I want to sell her to the circus. But, when she crawls into my lap and apologizes for being a hooligan and asks if we can be friends again, it melts my heart. I love this girl more than I can ever express and I'm so excited to watch her grow into the independent, strong willed, amazing woman she's going to become. This girl is gonna do big things -- she'll go far. :)

Well friends, thanks for reading my long over due life update. :) Despite everything that's happened to us these past 18-months, we feel so blessed -- we live in a good apartment, have great friends and family, have 3 beautiful children, live only an hour away from one of the greatest children's hospitals in the United States, both Austin and I got through college debt-free, Austin has a good job with benefits, and, most importantly, we have each other. Is my life perfect? Haha, no way. But, I believe this is the life the Lord needs me to live in order to become the woman he needs me to be.

God is good. 

Handsome boys! :)