I recently joined an initiative called the MOD Squad, Mothers for Organ Donation. Our mission is to raise awareness for Organ Donation, specifically pediatric donation. This is a hard topic of conversation, because to be an organ donor, you typically have to be dead. No one wants to talk about or think about a loved one dying. Especially their child. Unfortunately this happens. More often that you'd like to think about. In that time of crisis is not the time to have to make this decision. Have the conversation. Have it today. Register to be a donor. Register your children to be donors. Make your wishes known.
Why is this so personal for me? The reality is that Maddox is the recipient of Donor Tissue. They used someone's donated tissue in his very first surgery to create a graft. Honestly, I hadn't given much thought to this at the time. It didn't really occur to me that it was a gift from someone who'd passed on. I am grateful for that gift. Another of our 'realities' is that Maddox is very likely going to need a heart transplant in his life. While we hope that it will be 30 years away and by then they'll be growing new hearts from his own cells, the reality is that it could be 30 years or 30 days. We just don't know. If it's Heavenly Father's will for Maddox to receive that gift of a new heart, and remain here on earth with us, my prayer is that he will help soften the right person's heart and help them through their trial and the tough decision to donate that heart.
I have seen, with my own eyes and heart, the impact organ donation has on people. My father-in-law was very sick when he passed away. His organs were too sick to give to anyone else, but he was able to give his eyes. Someone else, possibly 2 people, have their sight because of this gift. I have seen children who's families we've become close too receive the gift of a heart transplant. I've watched as families have said good bye when it was too late for that gift. It's personal, and I want to do my part to help as many families as I can.
I had the opportunity to attend a meeting this morning in which the Utah
DMV was given an award for their efforts in raising awareness for Organ
Donation. 70% of Utahn's are organ donation. That is incredible! The national average is around 45%. That number is phenomenal and you'd think it'd be enough. I've learned that a very small percentage of those who pass away, who are organ donors, are actually able to donate. The situation has to be just right.
A sweet donor mother spoke at this meeting. Her son passed away unexpectedly shortly before he turned 17. Weeks before he told her that he'd signed up to be an organ donor, and they had the conversation. She talked about how much that meant to her when the time came to grant those wishes. I loved the analogy that she shared, and that is what I wanted to share today. She said it's like when you throw a rock into the water. As it sinks away, out of sight and lost to you, you see the ripples move out across the water. The rock may be gone, but the effects are far reaching. That's how organ donation is. It doesn't just effect the person who donated and the person who received. It touches their families, and their friends. It has an impact on the future generations. It touches complete strangers who are mere passer-byes. There is a ripple effect.
Another mother spoke as well. Her daughter is the recipient of a heart transplant. The sweet girl was just 18 months old and very sick when they got the call. She happened to be right next door to us when Maddox had a surgery in December 2009. I remember hearing this sweet girl giggling and seeing the nurse tossing cheerios across the room and into her bed. When I learned that she'd had a heart transplant just 2 days earlier I was amazed. That image has stuck with me over the last 3 years. She gave and continues to give me hope. Meeting her family and seeing their strength and gratitude has been a strength to me. There is a ripple effect.
There are plenty of myths about organ donation, if you are wondering if you can donate, chances are you can. Check out this website! YES Utah
Please join me in having the difficult conversation. Talk to your family, your friends, your neighbors. It's important and it does make a difference.
Saturday, November 3, 2012
I was startled awake the other morning around 2 AM. I don't know what woke me, but the first thing that popped into my mind was "She was fine." That is what Mia's mom said. That is what her dad said to us at the funeral. That's what the transplant team said. And her doctors before she left for her Wish Trip. "She was fine."
I could not fall back to sleep. So I read Mimi's latest blog post. Then I went and laid down by Maddox. The words "She was fine" kept running through my mind. I pulled Maddox into my arms and held him. Breathed him. Thanked my Heavenly Father for him. Silently cried and prayed for Mimi and John.
This isn't the first time I've seen another family say good bye to their baby. It's not even the first time since Maddox was born that I've witnessed this. But for some reason this time it hit me to my very core and I can't shake the sadness. I wasn't particularly close to this family, I know who they are. I know the public version of their heart journey. I was (am) looking forward to getting to know Mimi better as we work together on the IHH board for the next two years. I met Mia a few months ago at a HopeKids activity. We were swimming. She was jumping and splashing and living life. That image stuck with me. She was transplanted when she was an infant. She gave me hope for Maddox. She was 1 year and 8 days older than Maddox. She was fine.
That's why it hit me to the core. She was fine. I look at Maddox and see that every, single day. He is fine. He's great. He's pink. He's full of energy and life. He is loud and messy and destructive. I often sit back and smile at his antics. I can't even be upset with him because I am so grateful that he's here and healthy enough to be the holy terror in my life. I wouldn't trade a minute of the time we've had with him for anything.
I know the plan of salvation. I know that it's true. I have a very strong testimony of this and have a lot of faith in the plan. I know that families are eternal and that I am sealed to mine. Maddox will always be mine. Bailee will always be mine. Luke will always be mine. I have always had faith that whatever happens in this life, I will be okay and Heavenly Father will take care of me. Sometimes I think maybe I fall back on that so much that I forget I still need to do my part. But it's there and I have always know it's true. Through the ups and downs of the last 3+ years I have used that as my crutch to face hard things. I know it's all true, but it still hurts. It still feels unfair, and I still feel angry.
I don't know that I've felt anger about Maddox's heart. Maybe I have but I've worked through it. But so many parts of Mia's story make me angry. I don't understand why waiting a few days and letting her and her family enjoy a part of this trip of a life time wasn't possible. Maddox talks every day about his wish to eat noodles with Mickey. He remembers details that I had already forgotten. That makes me so happy for him and at the same time sad that Mia's family didn't even get a day of that. It's not fair.
My mom always said "Life's not fair." I don't think I understood that until now. It's not fair. It hurts a lot. Sometimes I wonder what I was thinking when I chose to come here, at this time, with these trials. It must have been a lot clearer then. I must have been a lot stronger than I am feeling now. Stealing a line from a friend "They must have promised me a cupcake."
After holding Maddox for nearly an hour I left him to sleep peacefully. He rolled over and smiled in his sleep. (I'd love to be inside his brain for a moment.) I crawled back into bed and thought about all of these things for another hour or so and finally fell asleep. It still hurt when I woke up. She was fine. He is fine. Please don't test me anymore just yet, I need to get a whole lot stronger than I am now.
Maddox is 6 weeks post Fontan. It's a relief and very surreal. For the last 3 years this was we looked forward to. The last planned surgery. Our journey is in no way over, he's not 'fixed', and any number of crazy things can happen, but this is the surgery that's going to give him his best chance at a 'regular' life.
We spent 16 days in the hospital. His surgery was September 6th. Dr. AK (Kaza) was his surgeon again, and it was really great to see him. When he came to chat with us before the surgery he was going on and on about how great we've done with Maddox. He was so impressed with how healthy Maddox is and how big he's gotten. It was like a huge validation that I'm doing okay with him.
Maddox was actually really excited to go to the hospital. He remembers being there in May for the heart cath. What he remembered was drinking sprite and watching movies, so he was really excited to do that again. I did my best to talk to him about why he was going back, but he's three and he really was just excited for the Sprite and the movies.
When we walked down the hall with the anesthesiologist it was surreal. Maddox was happy, I was nervous but calm, and Luke was strong on the outside as always. It seemed like just days ago that we'd made the same walk to take him in for his Glenn. It was crazy how familiar everything was even though it had been 2 1/2 years since the last surgery. Dr. Pribble took Maddox and Maddox was chatting his ear off as they went through the doors to the OR.
The waiting was long. We actually got to wait for part of it with a fellow Heart Mom, and another one came by to visit while we were there. So that was nice. It was great to have Judi and my parents there to support us as well. It's really hard being in a surgery waiting room with other families that are there for things like ear tubes. It's hard to be sympathetic (We've done ear tubes, and I get that anytime you are put under it's scary). But it's such a different situation and you see these families being so emotional over something that seems so minor to me, and you sit there for hours and hours and see the families coming and going as their kiddos are finished with procedures. I don't want to sound insensitive, believe me, I do get it. But it's just a hard place to be during that time. (There is talk of possibly having a different waiting room for heart surgeries, that would be so nice.)
We got a few updates, went for a few walks. We were coming back from grabbing a late lunch and we saw Dr. AK going down the hall. My first thought was "Why aren't you with my baby!" and then I realized he must be done. He was headed to the waiting room to chat with us, but since he found us in the hall we went to a quiet room to talk. Everything went as good as it could have. He talked about how they used to open the kids up and then decide what to do. Now the technology is so great that he knew what he was going to do when he got in there, and how he was going to do it. He gave us a piece of the conduit that he placed in Maddox. It's the craziest thing. I will have to find a picture and post it. It's like this soft material that holds it's shape but is pliable at the same time. Dr. AK said to give them an hour to get Maddox settled and then we could go see him. That was around 1pm.
Here's a video explaining the Fontan. Notice Dr. Gruber, he's our new Chief surgeon.
We were headed back to the waiting room to wait the last hour and Dr. Pribble saw us coming. They were just headed back to the CICU (Cardiology ICU) with Maddox. He stopped them so we could see our boy. It was crazy. He is so much bigger than the last time he had surgery. It didn't look as scary. He wasn't on the ventilator. I just wanted to hold him, but I couldn't yet. So we waited for the call that we could go back.
When Luke and I walked into the CICU I could here Maddox. He wanted a drink. We got to his bed (which happened to be the one bed I'd hoped we didn't get) and I tried to comfort him. He just wanted a drink so badly but he couldn't have one. We had a favorite nurse, one we'd had and loved during his first hospital stay, and she was really great. Personality wise, probably not my favorite, but she's so good at her job and I know she will take incredible care of my baby. They finally had to give Maddox some meds to help him relax and sleep. He was getting so upset about wanting a drink. It's hard seeing your baby want something so much, something so simple and available, but knowing it's in his best interest to wait.
Trina and Trudi brought Bailee up and everyone was able to see Maddox. He slept most of the afternoon and when he did wake up he only wanted a drink. Bailee handled it so well. She is so amazingly strong!
Luke and I stayed in the PICU waiting room that night, and surprisingly I slept. When we went to see Maddox before shift change that next morning, his nurse told us he'd been able to drink and didn't want to stop. They have to go slowly, and slow is not something Maddox is good at. After shift change the nurse was talking about how they would be moving us to the floor that day. I was shocked, and not prepared at all for that! Then she said "at this rate, you'll be home by Monday or Tuesday." I wish she hadn't said that. We were trying to prepare ourselves to be there for two weeks, and I knew her statement was unlikely to actually happen, and it was false hope. Maddox was able to eat and drink though, and was fairly easy to entertain. He still didn't feel great, but I was able to sit with him on the bed and he did really good.
They moved us up to the floor around 5ish and we got settled. We were in the treatment room though. It doesn't have a window and whatever is above it on the next floor is quite noisy. So I put in a request to move as soon as there was a room available. The benefit was that it's a bigger room, so with the extra family around it was nice. We had some visitors, family, fellow Heart Mom's, and our home teacher. We were able to attend church at the PCMC branch and really enjoyed that. I think it was Monday when we were moved across the hall to a room with a view.
Dr. AK wanted Maddox up and moving as much as possible. We started with a wagon ride on Saturday and then walking. The first time or two walking was rough, but Maddox was amazing. By Monday the boy was walking further than the nurses desk, and by Tuesday we were all over the hospital. It was interesting chasing him while pushing an oxygen tank and carrying 2 chest tube chambers. Once the first chest tube was out though it was easier.
Most of the days blend together for me. It was a lot of the same. We went for a lot of walks, enjoyed the playroom, played with the service dogs every chance we got, had music therapy visit a few times, and checked in on our other heart kiddos. That was a huge difference this time. I already knew who was going to be there and what procedure they were having (or waiting for). I could check in on them and see how things were going. We had a late night ice cream date, walks in the roof top garden, and definitely the sense of support and love. That is something I wish we could have had at the beginning of our Journey, but I'm so grateful for it now.
Maddox was really doing great, and in all honesty only had one thing holding him back from the overly-optimistic prediction of home on Tuesday. His body did (does) not want to get rid of this pocket of fluid hanging out around his lungs. We tried a fat free diet, we tried more diuretics, we tried more moving, and more blowing (as Dr. AK called it, pulmonary toilet). Everyday it was the same. Chest Xray looks the same, lets watch it another day. I was prepared for that every day, because I looked at those chest xrays every morning and they did look the same. I was still hopeful that my untrained xray eyes missed something and that they would come in and say it's better. It never was.
So we waited. We watched 3 BYU football games at the hospital. We saw friends come and go, and mostly we saw friends waiting. Waiting longer than we had. They gave me perspective. Anytime I was feeling down or antsy I could think of 3 people just down the hall that had been waiting a lot longer than me. They were my grip on reality. I saw that our waiting was not a roller coaster, it was simply waiting. We didn't have ups and downs, we just waited. I actually enjoyed those moments with Maddox more than I otherwise would have, knowing the stories of these other kiddos. 2 of them were waiting for hearts. Both of them had been living at the hospital for more than 100 days. They were on a roller coaster. Roller coasters make me sick. They probably make those mamma's sick too, but they did it anyway. You have to right? That's your baby you are riding the roller coaster for, and we'd do anything for our babies.
On Saturday morning, the 22nd of September, our 16th day in the hospital Dr. AK came in bright and early. He asked Maddox if he wanted to go home. You should have seen his eyes. "Home? Really?" It was the first mention of home from the one I'd wanted to hear it from most, the one I could actually trust to give me that news. Unfortunately, it's a lot of work to get out of the hospital. A lot more than getting in. It takes hours and hours. We packed up. We signed paperwork. We waited to see more doctors and nurses. We took stuff to the car. We filled prescriptions. We had the pink discharge paper in hand. I pulled Maddox around the CSU for at least an hour. Clutching that pink paper. Our ticket out of there. I went in the elevator by myself to get those prescriptions filled and I bawled. I was so happy to be going home and so heartbroken for the kiddos staying. Still waiting. Still hoping. I wished it were them instead of me. Give them their miracle, I could wait a little longer. But I also wanted so desperately to be home with my whole family. I don't like being in different places trying to hold it all together. When we got in the car around 12 pm, it was real. We were really headed home. Maddox was so excited. Luke was so happy. I was apprehensive, but ready. There was still fluid in his chest. We could be readmitted at any time. Was I ready for this?
We got home and things were chaotic and happy. I needed a nap, but got some other things done instead. Then the car died so I had to go get a new battery installed. Then the check engine light came on and I couldn't get it looked at on the weekend. And I was grateful it happened at home and not while we were trying to come home.
We had a chest xray the following Wednesday. It looked the same. We had a 2 week post-release check up. I knew we were being admitted. I packed our bags in preparation. I saw the chest xray. I heard the words. It looks the same. We'll check again on the 22nd. We didn't get admitted. I was shocked. We dropped a dose of diuretics. The fat free diet ended this past Wednesday. Yesterday restrictions were lifted. We go on Monday for a chest xray. I hope it doesn't look the same. But I'll take the same over worse.
Dr. AK did all that he set out to do. We've decided he did us an extra 'favor' and found Maddox's volume button. He turned it all the way up. He also gave him more energy than any one human being should be capable of holding. He gave him pink cheeks. He gave him easier breathing. He gave him another chance at life. I am and will be forever grateful to Dr. AK. As we were leaving the hospital I said to Luke "that could very well be the last time we see Dr. AK." That kind of makes me sad. Words cannot describe what I feel for him. However, I don't want to have to see him again. I want this surgery to be the fix that it really isn't. I want it to make his heart last forever.
Maddox is doing amazing. He doesn't know he's 'sick'. He is everything you'd expect from a three year old boy. I wish Dr. AK could transfer some of that energy from Maddox to me. We both go to bed exhausted and then wake up and do it all again. He is so naughty sometimes and I just smile. At least he's here with us. At least he's capable of being naughty. At least he's still mine. His cute nursery teacher said to me when I picked him up on Sunday. "You're right. He does have a lot more energy. He use to just sit in his chair so quietly." Her husband told me later in the week that he'd heard Maddox had turned into a little handful. He assured me that it was a good thing, and that his wife loves Maddox. I know she does. And she is right. He is a handful. And I am grateful.
The world lost a bit of sunshine 11 days ago. I went to the funeral on Saturday. It was one of the hardest things I've ever witnessed. If I feel the way I do about this, I can't even imagine how this sweet angels mother is feeling. It breaks my heart. This sweet girl was one year and 8 days older than Maddox. When I looked at her beautiful, peaceful face, I couldn't help but think of Maddox. When I hugged her parents I couldn't help but put myself in that place. It's not something that I've talked about, but it's something that I've thought about. A lot. How could you not when you are told that your one day old baby has a complicated heart defect and that they can't fix it. Throughout the service I felt so many different emotions. There was a moment when Grandma asked the Heart Mom's to stand up. I looked around. That was powerful. I think I counted 30. I bawled. We all did. Because we know that there are momma's who get it. Momma's who will be there if and when we need it. And not just on that day. But every day. As my sweet friend stated to dad "This doesn't end today. We will always be here."
And with that, I must go and rescue my house from the three year old super hero and his best friend Baseball.
After Maddox's cath lab procedure on the 22nd, Dr. G let us know that there was a possibility that surgery would be postponed due to the high pressures in Maddox's right ventricle and his pulmonary arteries. In short, he has high blood pressure in his heart and lungs. We later spoke with our cardiologist, Dr. P, who said the same things with a few more details. She wanted to talk to Dr. AK, Maddox's surgeon, and see what he thought. They decided that it would be best to wait and see if we can get his pressures down a little bit. We go back in August and will re-evaluate then. So much for my carefully laid out plans for Summer.
It honestly felt like a burden had been lifted when we got the official word. I didn't realize how stressed I really was until it was gone. Our summer is now quickly filling up with lots of really fun things! Although, I had looked forward to my dad being here to take care of things while we were in the hospital.... specifically my garden. There are a lot of really great things about waiting that I just kind of pushed aside while planning for surgery, so it's going to be a fun summer.
Bailee finished Kindergarten! I can't believe I officially have a first grader! She is so nervous about first grade, but I know she'll do great. Here's a proud Mamma moment.... Bailee received the Academic Achievement award among the girls in her class. She was pretty excited to go up on stage and get a certificate.
She also had her year end dance recital and is counting down the days until dance starts again. I'm glad that she loves dance so much. Bai is playing t-ball this summer and is most excited that she has a pink mitt, and that one of her BFFs is on her team. It was kind of crazy at their practice last night, they were the only girls on the team and definitely the oldest on the team. I guess it's not like Alamo where everyone plays t-ball, it's mostly the boys. Their coaches were really funny though and the girls left the field excited for their game and assured that they are the best hitters and players on the team. I'm happy for that boost of confidence, they both needed it.
Bai wants to play soccer later this summer, but we told her we'd have to see how t-ball goes. We don't need/want a repeat of 2 years ago. So we shall see how it goes.
Maddox is dying to play tball and was upset that he didn't get a turn last night at practice. He has no fear of the ball and walks around with either a bat or a golf club most of the time. He's so funny. Golf would be a good game for him. PG city has a cute program called Itty Bitty Ball that we are considering letting him try out. They have 4 classes and teach/play baseball, basketball, football, and soccer. Maddox would love all of that, and it's specifically for 3 year olds. Ahhh! I can't believe he's almost 3! Where has the time gone? It seems like just yesterday I was sitting in the CICU holding him for the first time since birth. One of his favorite things (besides all things sports related) is going to Nursery. Now that surgery has been postponed he gets to go to all of church and was so excited. He has the best teacher ever. We love her so much!
We are planning on playing a lot this summer! Seven peaks, Trafalga, t-ball, library..... It's going to be a lot of fun. Maddox really doesn't like the pool/water at all so it'll be interesting to see how that all goes. Bailee wants to go every day though so we'll have to find some balance.
I love my new job. It's nice to be able to work from home and still be able to take care of my kiddos. It's a bit challenging when Maddox has 'snuggle mommy' days, but it's so flexible that I can re-arrange my self imposed schedule to have those days. It's really a great fit for me. One of the first things I realized when surgery was postponed was that I can go to girls camp! I seriously love girls camp and am really super excited. Yeah!!
Luke is busy at work, and summer will only be busier. He works so hard and I'm so lucky to have such a wonderful husband and daddy for my children.
Life after Walt Disney World has been great. I don't think a day has gone by that one of the kids hasn't said something about our trip. We are so grateful to Make-A-Wish and Give Kids the World, and all of those who made it possible for us to go. It was a really incredible experience, and one that our family will cherish forever. I have been slowly posting pics on the Wish blog, so check them out there.
Through all the craziness of the past few months I have been reminded over and over that my Heavenly Father is mindful of me and that he is always here to support and strengthen me. I was chatting with another heart mamma who expressed that her faith has been shaken through these trials. There's has been a long arduous road. She expressed that she doesn't believe that God steps in and takes our trials away. Otherwise, how could we explain the miracles and the sadness that surrounds us. Why do some people get the new hearts they so desperately need, and others say goodbye to this mortal life? Why do some sweet children need a second heart transplant while others can hold onto their broken hearts a little longer?
The conversation helped me reflect on what I believe. I have never prayed for Maddox's heart to miraculously start working properly. I have prayed that it would work the best it could and that when the time comes we will be prepared to handle whatever trials and surgeries are needed. I pray for strength to teach him, and Bailee, to be happy and to be close to our Savior. I pray that we can accept whatever challenges come to us. And I let Him know how grateful I am to be Maddox's mommy. I know that miracles occur, but I also know that there are plenty of miracles in my life that are not obvious, especially to those not close to the situation. While I wish that Maddox's heart was complete and strong, I recognize that there have been miracles and tremendous blessings because he is in our home. He has touched many lives, and I am grateful for that. There are so many wonderful people I wouldn't know if it weren't for this special broken heart. There have even been missionary opportunities that would have otherwise not been possible. So I am most grateful at this time for the miracle of being strong enough to handle this situation, not alone, but with the love and support of my Heavenly Father, my Savior Jesus Christ, my wonderful husband, my children, our family, our new heart family, and countless neighbors and friends.
It's been so long since I posted on here. It seems after Facebook I don't blog nearly as much as I used too. Kind of sad. :( We had an amazing trip to Walt Disney World thanks to Make-A-Wish and Give Kids the World. Incredible. I am overwhelmed at the generosity and kindness of so many people. With all the negative we see and hear, it's so nice to be reminded that the world still has a lot of really great people. I am posting all about our trip on the wish blog, so head over there to see pictures and the highlights.
Maddox is in the cath lab right now. He finally got in around 12:45. They are going to check out his heart and make sure everything's good for his surgery in two weeks, as well as get an idea of what to expect. This has been scheduled for so long, it's kind of hard to believe it's finally here. I am definitely ready to be post-fontan and have many years before transplant. I will always try and take it one day at a time though.
It's really strange to be here at PCMC again. It's so familiar and yet there are many changes that have happened since our last stay. We walked up and down the hall between pre-surgery check in and CICU for quite awhile this morning, and just being there brings so many feelings and emotions. There is so much peace and hope in these halls. There is so much strength and bravery. So despite knowing that these rooms are filled with very sick children and very worried parents, there is a spirit here that I haven't quite felt anywhere else.
There are two sweet little ones here right now that I get the privilege of meeting. Both are very sick, but still smiling for the moment. I am grateful our little ones don't seem to know how sick they are and are able to be strong through these crazy times. I am also really grateful for the love and support we receive from our family, friends, and our heart family. It helps keep everything in perspective.
Maddox 'should' be finished in the next hour, so I'll update more later.
Today's probably not the best day to blog. I'm feeling super emotional and sad and heartbroken and a little angry, definitely hurt, and yet most of all gratitude.
Maddox got sick 2 weeks ago. His eye was goopey. I knew it was an ear infection. My first thought was 'here we go again' but I chased that away and let myself think it would be a one time deal. We got an antibiotic and went about our business. Within 24 hours his eye was cleared up, I gave a sigh of relief. So this weekend his Oxygen levels were crappy. Like in the high 60's, low 70's. It took a liter of oxygen and an hour to get them back at his normal 75, but even then it wouldn't stay. I called cardiology and because he had no other symptoms, they said if I was comfortable keeping him here and monitoring him to do just that. Part of me is screaming "of course I'm not comfortable with that! Why is it ok for my baby to have such low sats and me be ok with that?Why should any of us have to live like this?" I get over the pity party almost as soon as it starts.... most of the time. So Monday morning I know I have to take him into see our family Dr. Something is not right and I want to get to the bottom of it. His lungs sound clear, he doesn't (and hasn't) had a fever, he's still eating and drinking normally, and even though his SATS are 73 (wth) he is bouncing around the Dr.'s office like nothing is wrong. He gets a shot of a super antibiotic. We go for a chest xray it shows no pneumonia but slight swelling due to a cold. Duh on the cold part, but I'll take the no pneumonia part. Plan is to watch him overnight and go see Dr. B. again Tuesday morning. So yesterday morning his SATS are still low but I think he looks a little better. We go in and by the time we do SATS in the office, they are back to "his normal" (82) Keep in mind that if you or I were at 82, we'd be hospitalized. Dr. B said "If we were in the low 70's upper 60's we'd be unconscious." How do these babies live like this? It's truly a miracle. (insert a moment of gratitude here.) So then Dr. looks in the ear and it's infected...either again or still, who knows. Another round of antibiotic. And as soon as he said the ear was infected I said I'm calling the ENT. Not doing this again. He still has the tube in his right ear, but the left one is gone and has been for awhile...I think. So I let him run around for awhile yesterday afternoon without the O2 on and after a bit noticed the purple lips again. Sats were 72, O2 back on. The silver lining with the O2 is that he's absolutely had to keep it on the past 3 days, so he's kind of gotten used to it again. He's been supposed to wear it at night since the beginning of last month but it's been a FIGHT every single night.
Today I found out that one of our heart babies has to be listed for a transplant. Like right now. This little one is not much older than Maddox, and is a family we've followed closely. My heart is breaking. Again. I have no words to describe the emotion. And yet, this is the reality that I live with every. single. day. One day that's going to be me. One day that's going to be Maddox. One day that's going to be Luke. One day that's going to be Bailee. One day. One day that seemed to be years away. I still hope it's years away. But in this 'honeymoon' phase of Maddox's life, I've gotten comfortable. He hasn't been sick. I've been able to distance myself from the pain and the sorrow and the grief. And now I feel like it's all flooding back. Reality check.
In the midst of all of this I do have much to be grateful for. I have a wonderful Husband. The best, truly. I have a beautiful, crazy, wonderful Daughter who brings so much love into our family. Just this morning she told me "You're the best mom I could ever have." And I've had Maddox for 2 years and 8 months. He is happy and full of joy and life. He is funny. He is crazy. He is a mess. He is so full of love. He is a miracle. And regardless of the challenges we have faced and will face, I am so grateful God trusted me to be his mom.
I have felt more gratitude for my family in the past 2 1/2 years than ever before. I grew up with a great family, and I married into a great family. I couldn't ask for more... (well, except maybe for all of them to move closer to us....) We have gained another family too, our Heart Family. And I have appreciated so much these amazing families sharing their experiences with us and helping us through this part of our Journey. We have had great support from friends too, and I've appreciated their love and support.
Maddox just woke up a few minutes ago, so there was a break in my flow of words. :) I held him and cried and I felt the peace of the spirit. And I feel better for now. We're going to eat breakfast and watch Mickey Mouse and I will continue to enjoy my days with him.
Heartbreaking. I have no words, just tears. I held Maddox a little tighter yesterday and was reminded what a miracle he is. What a miracle it is that he's still here with us. Even on the hard days I hold on to that. I pray for this sweet family. As well as the many others who continue to battle this heartbreaking disease. In the midst of this trail that no parent should ever have to endure, this family is choosing to donate life to another child fighting a different battle. I am amazed at their strength and their unselfishness.
Usually by this time of year I am so sick of the snow and cold I'm cranking up the heat just so I can be hot and pretend it's summer. We have had almost no snow this year. It actually has reminded me a lot of home. When it has snowed, it hasn't been much and it's gone almost as quickly as it showed up. But we woke up to an inch or so this morning and it's snowing lightly right now. It's actually quite pretty, just glad I'm not traveling in it. :)
Maddox has been sick the past few days and I can't quite figure out what's wrong. No fever. Just a bit of a runny nose and a slight cough, but grumpy as all get out. Hard to know what hurts because he doesn't communicate that well. We had to keep him home from church today though, so Luke took Bailee and then will switch me before the 3rd hour.
I am teaching the Beehives now (12 and 13 year old girls) and loving it. I love working with the youth and was very excited to have this calling again. It is hard, and takes more preparation that teaching in Primary, but it's good for me. :) I had such great young women leaders that made (and continue to make) a difference in my life, I hope I can be that for these girls. It's fun getting to know the girls and the leaders, and the personal progress program is SO inspired, it's great to be working with that again.
My lesson today is about being happy and having joy now. What a great lesson for all of us. We are surrounded by so much good. So much beauty. So many wonderful people. Yeah, there's plenty of the opposite around too, but if we focus more on the wonderful, we can be happier and really enjoy our time now. There is this quote in the lesson: : “Happiness does not depend on what happens outside of you but on what happens inside of you” (“A Sure Trumpet Sound: Quotations from President Lee,” Ensign, Feb. 1974, p. 78). So true! Yet so hard to remember sometimes. Being happy is a personal choice. We can't control what happens around us, or even to us, but we can control how we react.
I needed this lesson this week. And every week. I have been stressing and worrying about the upcoming surgery, and I'm sure I will continue to do so, but I do need to focus more on today. And what I can actually control. That's not something I'm good at. I think because I'm such a 'planner', and I really feel like I have to know exactly what's going to happen. And this surgery has so many unknowns. I can't plan every detail or every minute. My control over the situation is limited to scheduling the appointments and handing my baby over to amazing doctors and nurses who will take the best care they possibly can. I have said that I know when we get there, in the moment, I will be fine. I handle the stressful situations well. It's not until the 'crisis' is over that I panic. Or in this case, leading up to the surgery. This is exactly why I was actually glad I didn't know about Maddox's heart while I was pregnant. Anyways, I guess that I need to dig a little deeper and focus on what's happening right now and not think so much about June.
So that's my goal this week. I hope that my 'stressing' posts don't come across as ungrateful or whining. I do know how blessed I am. And my family is. And that even though Maddox only has half of a heart....it could be so much worse. Comparatively speaking, we've had an easy 'heart' journey. I've seen families deal with much harder things, and much easier things. It makes me grateful for where we are at.
"This is our one and only chance at mortal life—here and now.
The longer we live, the greater is our realization that it is brief.
Opportunities come, and then they are gone. I believe that among the greatest
lessons we are to learn in this short sojourn upon the earth are lessons that
help us distinguish between what is important and what is not. I plead with you
not to let those most important things pass you by as you plan for that
illusive and nonexistent future when you will have time to do all that you want
to do. Instead, find joy in the journey—now.
Let us relish life as we live it, find joy in the journey,
and share our love with friends and family. One day each of us will run out of
tomorrows.
Despite the changes which come into our lives and with gratitude
in our hearts, may we fill our days—as much as we can—with those things which
matter most. May we cherish those we hold dear and express our love to them in
word and indeed."
We got Maddox's cath and sedated echo scheduled for late May. This whole surgery thing is just making me sick. I know it's necessary, and I don't not want him to have it. I know it's in the Lords hands and that whatever happens we'll be able to handle. I know that I trust his Dr.'s and especially Dr. AK (his surgeon) immensely. I just love this kid so stinking much it hurts, and this is going to be the hardest thing we've faced so far. I just really need to let it go and not think about it anymore. Or something like that....
So Maddox had his cardiology appointment yesterday. I have known it was coming for 6 months, but Wednesday night I just started feeling so anxious about it. I had a hard time sleeping. Then as I was driving and caught sight of the Riverton Hospital (we get to go there for appointments, so much closer and easier and quieter than going to Primary's) my heart started racing. I don't know why I was having such a hard time, I knew what was coming. So we check in and they sent us downstairs to get a chest xray. They always have me step back where the computer is, and I like seeing the xray. It's crazy to look at it and see the wires twisted around his sternum. Like bailing wire. For the first time I looked past even that though, and saw the outline of his heart. Crazy. Beautiful. Maddox hated sitting for that, but they gave him some Queen (Lightning McQueen) stickers and he was a little happier. I didn't bother putting his shirt back on for the walk back upstairs, we'd have to take it off again anyways and he'd rather have it off. As we were riding in the elevator, he was putting queen stickers on his chest, just so happened to be right along his scar. I thought it was pretty funny.
We passed a few people and I wondered what they thought when they saw his scars. What does anyone think? It's so much a part of who Maddox is, that I don't even notice it all of the time. Sometimes I see it though and I'm just hit with so many emotions.
Maddox also did not like the stickers they put on for the EKG, but once I told him he was a robot and got him to look at the computer screen, he settled down. When the nurse went to leave with the machine he waved and said "Bye bye robot". Dr. G (the fellow that works with Dr. Pinto, whose last name I can't seem to get my brain to remember...) came and checked Maddox out and asked all of the usual questions. Then he started talking about the Fontan surgery and giving me a timeline. After we talked about that for a bit, we both agreed that early June will be best. Then Dr. Pinto came in and agreed and we have a plan. So Maddox will have the pre-surgery cath and echo early to mid May, with the Fontan following within 2 weeks.
I already knew this, it's what we've been planning, and what I've been telling people, but for some reason having it confirmed by the Dr.'s just makes it so much more real. I know he needs this surgery, and I know it's time, but it's really hard to think about sending him back into the OR. To think about him being on bypass, and intubated, and coming out of surgery covered in chest tubes and wires. I am dreading the first time he wakes up and wants me to hold him and not being able too. I'm dreading not being able to give him food or drink when he asks. I'm dreading the pain he will be in, and the understanding he will not have. But...I absolutely know that when the time comes I will have peace and comfort. I know that God will be with all of us.
After we were done talking, Maddox had a question for Dr. Pinto. He asked her if he could "Eat noodles with Mickey." We have talked about possibly taking a family trip before the surgery, and I wanted to be sure it would be ok to travel and everything. So she told him yes and I think he thought he could go see Mickey right then. ooops.
Just before we left, another Dr. came in to see us. We've met him before, he gathers participants for research studies. We are enrolled in some studies, but I couldn't tell you how many or which ones. Anytime they've asked, I've said yes. They've taken blood a couple of times, and I think for the most part they just track his progress on different things. I know how important these studies are, if it weren't for others willing to participate we wouldn't have Maddox today. So hopefully whatever they find out can help kids in the future. Anyways, Dr. AK (Maddox's surgeon) is doing a study on the growth of these kids. So we said yes, and went down to get blood drawn. Maddox was not happy about that, but he got to pick another treat. We left the hospital with 2 bouncy balls, a sticky hand, a sheet of Queen stickers, and a cute wooden truck. It was funny because Dr. Pinto said "We don't have any good toys here today! But when he comes back for the next appointment he'll get a blanket and some better toys."
Then we got to meet a dear friend for lunch. We met Val at PCMC when Maddox was there the first time, and her sweet princess was in the room next to us in the CICU. It was so good to catch up and see our little guys playing together! Her son is about 9 months older than Maddox, so he was just a baby hanging out at the hospital while her daughter was there in the room next to us. I think these boys were meant to be friends. Given the chance, they will get into lots of trouble together.
I also had to run up to the UofU so while I was there, I dropped off some cookies to the CICU, Dr. AK, and a fellow heart mom. Walking through those halls gives me chills. It's like re-living your past. I walked to the CICU and entered the doors and so many memories came rushing back. Some make me smile, some bring tears to my eyes, some break my heart over and over. When I went to Dr. Ak's office, I turned too soon and ended up in the surgery waiting room. I looked around at parents waiting for updates and wanted to hug them and tell them it would be ok. I passed a couple in the hall who were headed back to the post-op rooms with a nurse who had led me there before. I passed the doors to the OR and thought of the times Maddox passed through those very doors. And I said a little prayer in my heart for the children who were in there at that moment. When we went up to 'the floor' Maddox got out to see Spider man (there's a statue in the lobby) and then walking through the surgical unit, he loved seeing the whales and dolphins and turtles and fish painted on the walls and floors. He was so happy, walking and jumping and telling me the names. I smiled and encouraged him, but what I was really thinking about was how the next time we were there he'd be wheeled through these halls in a bed, hooked up to machines.
No wonder I woke up feeling down today. The appointment was really a positive one. And things are really going just as good as we could hope for. But I just have so many things running through my head! I need to quit thinking about it so much, enjoy today, and rely on my Savior to make up the rest. We truly are blessed. I am lucky to be Maddox's mom. I am grateful for all of the new friends I've made because of our heart journey.
After a lot of praying and cleaning and searching, I found the keys. Huge sigh of relief. Of course they were in a place we'd looked multiple times. Super happy though. I have a clean house and keys. :)
I lost my keys Saturday afternoon. We have looked every where, and I am just sick about it. I have re-enacted the last time I saw them so many times! I got out of the car, I grabbed the 1 bag from Walmart off of the back seat, I walked into the house, set the bag and my purse on the table, grabbed the newly purchased can of black paint, walked outside to paint the bases for my cute new V-day mail boxes, walked back inside, went downstairs and sat on the couch. I've checked shoes, the sweatshirt I was wearing, under all of the cushions and the 2 couches downstairs, I've looked in every drawer and cupboard in the house, in the garbage, every where I was and everywhere I wasn't. I feel like the whereabouts of my keys is right on the edge of my memory, and at any moment it will come to me.
This morning when I prayed at breakfast, I again asked for help in finding the keys. Afterwards Bailee said to me "They (meaning the holy ghost and Heavenly Father...) are looking for your keys, and when they find them they will tell you. So you don't have to keep praying about it." I love her logic. It was a teaching moment for both of us. I told her that I believe that Heavenly Father knows where my keys are, but maybe He's helping me learn patience and faith by allowing me to continue looking for them and praying about it. I told her that we have to have faith and keep praying because he doesn't always answer right away.
So today, my house is going to get a deep cleaning while I continue to search for my keys, and continue to pray for help in finding them. I hope to report good news by the end of the day. But if not, I will trust that the Lord has a plan.
Yesterday was a bit of a dejavu day. I was called to be the Beehive adviser in our ward. I will get to work with the 12 and 13 year old girls. I am really excited to work in Young Women's again, but I am truly sad to leave my primary class. I have only been teaching it for 5 weeks, but I have loved teaching the 8 year old children, and getting to know my sweet team teacher. I will miss them. It's just crazy because after I got home I was thinking about how 3 years ago, this month, this was the calling I got in our other ward. The one I referred to in my last post. Circumstances are surely different though. I am not pregnant, or sick. Life is pretty routine and we are settled.
I have felt the stirrings of change for the past few weeks and was thinking that it had to do with Maddox's upcoming cardio appointment, or the surgery that will likely happen in June. Those things will still be happening, but I think the change I was being prepared for was this new calling.
Speaking of heart stuff.....CHD Awareness week is coming up. We celebrate February 7th through the 14th. Wear red all week! Also if you are having a baby, or know someone having a baby could you do something super easy??? Will you request a Pulse Ox monitor/screening for the baby? This really simple, non-invasive test can save lives and give you peace of mind. It's a simple band-aid looking strip with a little red light. They wrap it around the babies hand or foot and check the oxygen saturation's, it takes just a minute. Even if you don't have a family history of heart defects, it's worth the minute to be sure.
Happy Monday! I'm off to do some cleaning and hopefully find my keys!
I've been very reflective the past week. (minus yesterday, I was sick and didn't think about much of anything) I've been thinking about this time in my life....3 years ago and how much has changed since then. 3 years isn't really that long ago in the big picture. I was pregnant with Maddox and so, so, so sick. I remember thinking (actually I'm sure I thought this while pregnant with Bailee too) that if Heavenly Father really wanted women to bring children into this world, why oh why did it have to be such a miserable experience? Why can't I grow this baby and feel well enough to take care of Bailee too? Looking back though, it's easier to remember a lot of the really great things about being pregnant. Like feeling the baby move, the knowledge that you are doing something so important for someone else, the anticipation of meeting the little one and getting to know this precious spirit, the preparation of the clothes and nursery and all of the other essentials. The good things definitely make up for being sick. (It's hard to focus on that while you're puking your guts out though.)
Anyways, I've just been thinking about this and how grateful I am for the Tender Mercies of the Lord. Though I didn't know it at the time, He really did prepare us for Maddox. I knew that things would not be the same for Bailee and I after Maddox was born, and as much as I looked forward to his arrival, I was feeling sad about the change in Bailee and my relationship that would surely happen. I am happy to know that I did everything I could to take advantage of that time Bai and I had together. It was such a fun and happy time for both of us. We played and laughed and loved and grew even closer. I remember my parents wanting so badly for Bailee to come spend some time at their home before Maddox came and I just kept saying no. I felt selfish for not wanting to 'share' her, but I knew in my heart that I needed her here. After Maddox was born I realized how important that time really was and I was even more grateful that I listened to those feelings.
There were other things too, that prepared me. The numerous priesthood blessings for sure, my church calling at that time (working with the young women in our ward), and a greater desire to study the scriptures and pray. I was more consistent at those things during that time than I had been before. Heavenly Father helped me prepare physically, mentally, spiritually, and emotionally in so many ways. Even the passing of Dad B. had a huge part in how I was able to handle the news of Maddox's heart. Because we had just experienced the pain and joy of that time, I had a clear picture of the Lords plan. While feeling the sadness of Dad B's passing, I felt the peace of knowing that he was happy, healthy, and well now. I felt the peace of knowing that one day we will be re-united. It's a day that I look forward too very much; a time when I can get to know who he truly is. Having felt all of those emotions just 3 weeks before Maddox came, I had that same peace and knowledge that whatever the outcome of this heart defect, it would be ok. We will have eternity.
There is still so much unknown with Maddox's future. We have an 'ideal' plan in mind--Fontan surgery this summer, years of being healthy and fulfilling his hopes and dreams (and some of ours), becoming an eagle scout, serving a mission, the opportunity to be married and have a family, eventually a heart transplant-- but we also know that Heavenly Father has a plan for Maddox and whatever that plan is, it will be ok. One of the biggest things I think I've learned in the past 2 1/2 years....well maybe in the past year and a half, that first year is still kind of a blur......is that life is unpredictable, for us all...not just Maddox. We truly do not know what will happen to any of us, but we do know that we can be together forever through the plan of our Heavenly Father. I am trying to focus on now, and not so much on the future. We need to enjoy today today, and worry about tomorrow tomorrow. Easier said than done, but something that I'm working on nonetheless.
...next post? All about Maddox. Bailee loved the post about her, but asked me immediately when I was going to do one about Maddox. The funny thing to me is I decided to do that post about her because I was feeling that so much of this blog has been about Maddox. She's so sweet though.
Bailee is 5 1/2! I seriously can't believe it some days. Where has the time gone? It seems like just yesterday she was a baby. I was looking through dvd's tonight and found a couple from when she was between 1 and 2. She was seriously so much fun! She still is, just in different ways. So I just thought I'd do a brag post all about Bailee....
Bailee is a crafty girl. She always has been. She loves to color, paint, stamp, draw, chalk, cut, glue, string, build. Her ideal mommy-daughter time is crafting, and we don't do that nearly enough.
She loved all of her Christmas presents, but do you notice what she's doing? After everything was unwrapped, the first thing she re-visited was a princess coloring page from her auntie's.
Here she is at our Hope Kid's Christmas party, decorating a bag to put all of her goodies in.
Bailee is the best big sister EVER. She always has been. She couldn't wait for Maddox to come, and was so excited to go to the hospital to meet her little brother. I think she was confused about the whole thing for awhile. I had prepared her for him to come home, for her to be able to help me take care of him, for her to hold him and play with him. Though it wasn't anything like we planned, she eventually was able to do all of those things. I absolutely love watching Bailee and Maddox together. He ADORES her, and she takes such good care of him. She's patient (unless he gets into her room), and kind, and loves to help him learn new things (not always the best things, but new things nonetheless). It's fun to watch him mimic her (most of the time) and I love seeing the love and affection she has for him. It's priceless.
Bailee is strong. Strong willed, strong minded, strong in spirit. I don't imagine the first 5 months with Maddox was easy on her, but she handled it like a champ. She was patient and loving. Her world was turned upside down, but she made the best of it. I am grateful for her strength.
Bailee is beautiful. Inside and out. She is such a sweet girl, and so thoughtful. She is really starting to think about other's feelings more, and always trying to do things for those around her. She loves to give gifts, and her favorite thing to give is pictures that shes drawn, colored or painted. I have stacks and stacks of them, and since she's learning to write, they are starting to say "To Mom From Bailee" or "I <3 mommy". It's so sweet. I love her smile and her twinkling blue eyes.
Bailee loves to dance, and she's so fun to watch. I've enjoyed seeing her progress over the last 3 years. She's become more coordinated and graceful. She loves all kinds of dance and makes up her own all of the time.
Bailee is smart. It has been so fun for her to go to school. She is soaking it up like a sponge. She loves her teachers, her classmates, learning to read and write. If you ask her what her favorite part of school is she'd say Monday. She loves (early out day) going to the computer lab. Her next favorite is art class.
Some other random things to remember: She is a proud UNLV fan and want's to be a UNLV cheerleader, she adore's Bronco Mendenhall and Justin (but won't cheer for BYU), she's on her 3rd crush of the year (and yes, I mean 2012), she wants a baby sister so she can have a bunk bed, she's learning to ride her bike without training wheels, she's in CTR 5 and loves her new teacher, she loves talking about when we went to San Diego and how she loved Shamu......she was 9 months old, she (mostly) refuses to wear pants...unless she wants to be 'Flika" then she'll wear jeans if she can wear boots and her pink cowgirl hat,
I could go on and on. I am blessed to have such a sweet daughter. Even in the moments she's driving me nuts, I know how lucky I am. (And let's be honest, the things that drive me nuts are the things she get's from me. the boy craziness, how slowly she get's ready for school, the art supplies everywhere, her messy room....so this is where mom's wish for me to have one just like me comes into play)
I love you Bai and I'm so proud of you!
Bailee's current favorites:
Color: Pink and Sparkle
Food: Bailee's beef noodle casserole (kind of like stroganoff)
Books: The Very Fairy Princess, the Magic Treehouse books, Summer Pony, the Boxcar children books
TV Show: Shake it up!
Movie: Flika (this is a new favorite), any of the Barbie movies, Tangled
Princess: Ariel
BFF's: McKinley, Katelyn, Libby, Trevor, Mommy
Treat: anything you can call a treat, rice crispy treats with sprinkles, cupcakes
In the past 2 years I honestly have scrap booked only a couple of layouts. It just hasn't been a priority, and I promised myself that I would never let it become a chore. 'cause really, that takes the fun out of it. I do look at the books (and there are quite a few) stuffed full of layouts documenting our family in the first 4 years and wish that I had the same for the past 2. It is so fun to look back through them and reminisce. The kids especially love looking at them.
I will also honestly say that when Close To My Heart announced their online scrap booking program, Studio J, I was sure I would not be interested. I love the hands on, crafting, cutting and gluing, inking and embellishing part of scraping. It's been a great creative outlet for me, and I don't plan on giving it up. However, I have been trying to get familiar with Studio J so I can help others use it. It really is a great tool, and the more I use it the more I love it. The past few days I've put together a few layouts, from the comfort of my bedroom, with nothing but the computer to get out and put away. I love the simpleness of Studio J and I love the complexity. Anyone can seriously use it, from beginner to pro, from the 'not so crafty but wants to be' to the scrap booking diva.
There are some great tutorials on You Tube by Amy Ulen that you should definitely check out. I have learned so much by watching them!
Here are a few layouts I've created in the past couple of days.
If you have any questions or want to learn more, you can email me tracibulkley@hotmail.com and/or visit my website http://tracibulkley.myctmh.com/
