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.
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