Did you notice a new tab at the top?? We have some exciting news to share, and I wanted it to be it's own blog for now.
So.... Click on the tab that says "Wish" and follow Maddox's (but really our whole family's) latest adventure.
Wednesday, March 14, 2012
Wednesday, March 7, 2012
Reality
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.
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.
Wednesday, February 29, 2012
Another Angel earns her Wings
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.
Sunday, February 19, 2012
Snow...
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.
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."
Friday, February 17, 2012
Scheduled....
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....
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