Have you ever had that moment when you think things are fine overall, maybe something's a tad off, but things overall are okay...then your world just tilts? You get a call from the daycare or a text from your spouse that causes you to drop everything, literally, and just run to them. This happened twice to me in two weeks. We're still "digesting" some of it.
I (Joy) am a trainer, and I go to various locations throughout the state of Missouri to provide training for our department's employees. I was preparing to leave when my husband called to say the daycare was worried about our son, Blaze, who has half a heart. He had just come from a thorough heart exam with flying colors the week before, and now he is acting confused, is lethargic and has no color in his face. I went with my husband, Tim, to pick him up from daycare, then took him to his doctor. He had strep, along with a fever, and he picked up a secondary virus along the way. He had sores develop in his mouth, down his throat and into his stomach. Blaze was miserable and unable to eat, dehydration is a heart baby's enemy and we did our best to get fluids of any sort down him. It was scary, nerve wracking and he made it through and is feeling terrific now! Whew!
I had to leave town for work the day of Blaze's strep diagnosis, and came back home late Thursday evening. Tim had been dealing with him all week, since he was unable to go to daycare. Tim's mom relieved Tim off and on during the week. Our sweet son was exhausting during this time, unable to sleep through the night without thrashing around and screaming out in pain. It was so miserable for Blaze, and challenging for Tim as the caretaker.
During that time, Tim was dealing with a reoccurance with a stomach issue that has been bothering him off and on for months. Saturday he took himself in to Urgent Care. They gave him medication, ran several tests and determined he needed an ultrasound. Since it was Easter weekend, the ultrasound needed to wait until the next week. Tim's results needed to go to a doctor, and he really needed to get established with one here, so he turned to his family doctor from childhood. At this point I was out of town again, and my mom had come down to help watch Blaze, so Tim could work. Thursday, in the middle of training, I get a text from Tim that he has been hospitalized.
My world tilted again.
I was in St. Louis and for the first time, I had two trainers from my office teaching in the next room. They were tag teaching, but one of them was more of an observant during the training. She was kind enough to fill in for me on the spot, so I could get back to Tim.
The ride back from St. Louis to Jeff City was a long one, made easier by speaking with a friend along the way. I kept reflecting on how odd it was, to be going through a medical crisis in our marriage with Tim not beside me, and I really needed to be with him. He had only been admitted for observation and testing, but I knew we'd both feel better when we were together.
Tim was discharged the following evening with a laundry list of possibilities....and one thing that took our breath away. Something I haven't mentioned in this, is that Tim is a cancer survivor. He defeated lymphomia, which God's grace and a lot of radiation and chemo, in his early twenties. He met with an oncologiest who wanted a CT scan on him in order to clear him for the year. It didn't quite work that way, they found a mass in his chest. It could be a calcified lymph node, it could be star tissue, it could be....a myriad of things. We still don't know yet. His oncology appointment is a week from today. She's coming in just for him that day, normally her office is closed. I'm going to take that as fact she's an amazing professional, going above and beyond the call of duty, and ignore the bubble of fear that makes me question why she's coming in on a day off. I am thankful to be in town this next week, and would have been with him at the oncologist, no matter what. We are expecting this appointment to not give answers, but to schedule testings with a thorasic surgeoun for a biopsy. But it's still a "big" appointment in our minds.
So now we're living in this limbo state, with our world totally off kilter. We continue to move on and trust. There's an edge, but there's also a sweetness and compassion for each other, too. Tim is doing a fanstastic job with the dietary changes he needs to make, and he's able to laugh a lot about the situation with his stomach, which still isn't resolved.
And we're praying...for each other, for our family, for healing, for a time of peace, for God to find favor with our family. During this chaos, I got a job interview for next week and we had an update on our house fiasco, which was for the positive. We can see God moving, but we're still not sure where exactly we're at. But we do know we can continue to trust in Him.
Whenever I am afraid, I will trust in You. In God (I will praise His word), In God I have put my trust; I will not fear. What can flesh do to me? Psalm 56:3-4
Friday, April 12, 2013
Friday, March 8, 2013
The Right Direction
We have been fighting on behalf of our son since before he was born. When we moved to the Central Missouri area, we felt good about the fact we would be near good doctors and hospitals, and cut off four hours, or so, of our drive when we need to go to St. Louis. We quickly found a cardiologist that a friend in the medical field recommended and we felt good about that. Our first visit went well, even the head of the unit was in the room, helping to sing and distract Blaze from the echo, so we could get good images of his heart.
And then...things just started slipping. He wasn't getting echos/EKGs every visit, like we were used to doing. We thought maybe it was just because he had his last surgery and maybe the urgency for those tests weren't as needed. Blaze did have a sedated echo & EKG, but we had some serious concerns about the person administering his anesthesia. Things just didn't seem right with the set up. The last appointment Blaze had with them, we were going to have an echo & EKG. I was so relieved. I needed to know what was going on with his heart. And then...Blaze cried. The woman who came in to do the test asked him if she could do the EKG, she spoke softly with both of us, and because the four year old didn't want to do it....she refused to do an EKG on him. That was my limit. We began making arrangements to see another cardiologist.
The new cardiologist seems very thorough. He is out of Cardinal Glennon Children's Medical Center in St. Louis and comes to our area once a month. He was not satisfied with the performance of the echo machine when he saw Blaze, so he requested we go to St. Louis for Blaze to have a full work up. This means that we are switching hospitals for his cardiac care in St. Louis. We've always gone with Children's. It was hard. That hospital helped save Blaze's life. I struggled with that decision, but it did make it easier knowing Blaze's surgeon had left Children's, too, and gone to Cardinal Glennon.
With our appointment looming next week, I've been lighting a fire under our cardiologist office, in order to have his medical record released. It has not been a simple process. So I called yesterday to check on things, and casually asked if they were sending everything from Children's Hospital, too. I didn't want the new hospital to have too many duplicates. My world stopped for a bit when I heard the words, "We have a few things from there, but if your new doctor needs more, you can request information from Children's after that." I double checked, "Are you saying you only have a few things from Children's?" The answer was, "Yeah, again, if they need more, ask for the info then." I thanked her and hung up, and called Children's to start that process.
I felt like I had let Blaze down for a year and a half. Why his information never went from Children's to our cardiologist is beyond me. I realize they don't need every note ever written on the child, but they should have more info on him than "a few things." He's had 3 open heart surgeries and 3 heart caths. Thankfully, Blaze appears to be doing well. She really made our decision to switch doctors totally pain free and easy.
Parents, please, always listen to your instincts about medical issues. The Holy Spirit guides us constantly and you must be an advocate on your child's behalf. I didn't know to check if they had all of his medical records, I just assumed they did. Ask questions. It's better to be "that mom" than to live in regret.
"Whether you turn to the right or to the left, your ears will hear a voice behind you saying, 'This is the way, walk in it.'" Isaiah 30:21
So thankful we are now going in the right direction.
And then...things just started slipping. He wasn't getting echos/EKGs every visit, like we were used to doing. We thought maybe it was just because he had his last surgery and maybe the urgency for those tests weren't as needed. Blaze did have a sedated echo & EKG, but we had some serious concerns about the person administering his anesthesia. Things just didn't seem right with the set up. The last appointment Blaze had with them, we were going to have an echo & EKG. I was so relieved. I needed to know what was going on with his heart. And then...Blaze cried. The woman who came in to do the test asked him if she could do the EKG, she spoke softly with both of us, and because the four year old didn't want to do it....she refused to do an EKG on him. That was my limit. We began making arrangements to see another cardiologist.
The new cardiologist seems very thorough. He is out of Cardinal Glennon Children's Medical Center in St. Louis and comes to our area once a month. He was not satisfied with the performance of the echo machine when he saw Blaze, so he requested we go to St. Louis for Blaze to have a full work up. This means that we are switching hospitals for his cardiac care in St. Louis. We've always gone with Children's. It was hard. That hospital helped save Blaze's life. I struggled with that decision, but it did make it easier knowing Blaze's surgeon had left Children's, too, and gone to Cardinal Glennon.
With our appointment looming next week, I've been lighting a fire under our cardiologist office, in order to have his medical record released. It has not been a simple process. So I called yesterday to check on things, and casually asked if they were sending everything from Children's Hospital, too. I didn't want the new hospital to have too many duplicates. My world stopped for a bit when I heard the words, "We have a few things from there, but if your new doctor needs more, you can request information from Children's after that." I double checked, "Are you saying you only have a few things from Children's?" The answer was, "Yeah, again, if they need more, ask for the info then." I thanked her and hung up, and called Children's to start that process.
I felt like I had let Blaze down for a year and a half. Why his information never went from Children's to our cardiologist is beyond me. I realize they don't need every note ever written on the child, but they should have more info on him than "a few things." He's had 3 open heart surgeries and 3 heart caths. Thankfully, Blaze appears to be doing well. She really made our decision to switch doctors totally pain free and easy.
Parents, please, always listen to your instincts about medical issues. The Holy Spirit guides us constantly and you must be an advocate on your child's behalf. I didn't know to check if they had all of his medical records, I just assumed they did. Ask questions. It's better to be "that mom" than to live in regret.
"Whether you turn to the right or to the left, your ears will hear a voice behind you saying, 'This is the way, walk in it.'" Isaiah 30:21
So thankful we are now going in the right direction.
Monday, February 25, 2013
Thankful
Today we had an ultrasound, and what I saw brought tears to my eyes...in a good way. Today I saw a four chambered heart, beating strong, in our unborn child. It occurred to me that I had never seen that before now.
I can't help but reflect a bit in the difference in the pregnancies. With Blaze's pregnancy, I was ecstatic right until we had the news about his heart at the twenty week ultrasound. I became a fighter, a Mama Bear who must protect her child. It was no longer about me and what I felt, it was all about Blaze's survival and how to get him there. We got pregnant again when Blaze was a little over a year old. We learned that I was in the process of miscarrying at the first ultrasound, where we heard the news, "there's no heartbeat." That seemed especially cruel at the time, considering how hard we had prayed over Blaze's heart. So, with this pregnancy, I've been cautious, even hesitant about it. Guarding my heart and emotions, determined something awful would happen. Just waiting for the bad news that was sure to come. Today, I felt that burden lift.
That's not to say we're in the clear and nothing bad can happen with this pregnancy. We have a lot of factors against us. We know there's no perfect situation. But I let go of that fear and worry today. I was reminded that even if something bad had happened, God would see us through it. He is faithful.
With Blaze we learned that God answers prayer, maybe not in the way we hoped for, but He does answer. Blaze is stronger, healthier and taller than we thought he could be. He is physically so amazing, but he has a spiritual strength that is rare with children.
We can't see the steps ahead, and in some ways the path seems kind of foggy, but we're making it one step at a time...and today we celebrated a baby that is forming just as it should. We're so thankful. God is good, and we have been blessed.
For we walk by faith, not by sight. 2 Corinthians 5:7
I can't help but reflect a bit in the difference in the pregnancies. With Blaze's pregnancy, I was ecstatic right until we had the news about his heart at the twenty week ultrasound. I became a fighter, a Mama Bear who must protect her child. It was no longer about me and what I felt, it was all about Blaze's survival and how to get him there. We got pregnant again when Blaze was a little over a year old. We learned that I was in the process of miscarrying at the first ultrasound, where we heard the news, "there's no heartbeat." That seemed especially cruel at the time, considering how hard we had prayed over Blaze's heart. So, with this pregnancy, I've been cautious, even hesitant about it. Guarding my heart and emotions, determined something awful would happen. Just waiting for the bad news that was sure to come. Today, I felt that burden lift.
That's not to say we're in the clear and nothing bad can happen with this pregnancy. We have a lot of factors against us. We know there's no perfect situation. But I let go of that fear and worry today. I was reminded that even if something bad had happened, God would see us through it. He is faithful.
With Blaze we learned that God answers prayer, maybe not in the way we hoped for, but He does answer. Blaze is stronger, healthier and taller than we thought he could be. He is physically so amazing, but he has a spiritual strength that is rare with children.
We can't see the steps ahead, and in some ways the path seems kind of foggy, but we're making it one step at a time...and today we celebrated a baby that is forming just as it should. We're so thankful. God is good, and we have been blessed.
For we walk by faith, not by sight. 2 Corinthians 5:7
Saturday, February 23, 2013
Big changes...and a nervous Mommy
It has been awhile since I (Joy) posted and I do want to apologize for that. At first I was distracted by some news...then I had some password issues, but we are back on track.
The big news? Our son will have a baby brother or sister in August. Blaze is thrilled to be a big brother. He wants this with all his little being. He is sure it must be a boy because there's no curly hair on the ultrasound pics. HA!
Quite honestly, I'm struggling with this a bit. Please understand, I am thrilled to be having a baby, this child will be loved and adored and celebrated. I'm nervous, though. We went the beginning of my pregnancy with Blaze just so thrilled and happy. The 20 week ultrasound was devastating. I'm just about 17 weeks and I have an appointment in two days. I keep waiting for the other shoe to drop, so to speak. This is one of the most watched babies EVER. I have some high risk factors and because of that I see a nutritionist, an OB/GYN and a maternal fetal medicine doctor every four weeks, at this stage. Our chances of having another child with a heart condition are increased, but only by 1 or 2 percent, which is an odd I like. Everything looks great, thankfully! And yet there's a part of me that wants to add "so far" to that last sentence.
Blaze's life, the miracle God granted us with Blaze, increased our faith and grew us closer as a family, but it was not an easy journey to get there. We not only went through his heart condition challenge, but there were other issues in our personal lives going on...like transmissions (yes, plural)going out.. that made life extra daunting. And that was just one of the challenges. It felt like life was throwing everything it could against us, and again with this pregnancy we've been experiencing a very challenging season of life.
So, I'm asking very humbly, for your prayers. I know with all that is in me that God is in control, He loves us and has a plan to prosper our family, to give us hope and a future, and I'm clinging to that right now.
There's a song that Third Day sings that has helped during this time. The song is, "I need a Miracle" and the chorus goes:
Well no matter who you are
And no matter what you've done
There will come a time
When you can't make it on your own
And in your hour of desperation
Know you're not the only one
Prayin' "Lord above, I need a miracle"
So, dear friends and prayer partners, I always strive to be honest and open with you. So, in the interest of being transparent, I just wanted to share the concerns I have and what's on my heart right now. I'm struggling a bit and would appreciate your prayers. Thank you for continuing to pray and support our family. We are so incredibly blessed to have you in our lives.
"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight." Proverbs 3:5-6
The big news? Our son will have a baby brother or sister in August. Blaze is thrilled to be a big brother. He wants this with all his little being. He is sure it must be a boy because there's no curly hair on the ultrasound pics. HA!
Quite honestly, I'm struggling with this a bit. Please understand, I am thrilled to be having a baby, this child will be loved and adored and celebrated. I'm nervous, though. We went the beginning of my pregnancy with Blaze just so thrilled and happy. The 20 week ultrasound was devastating. I'm just about 17 weeks and I have an appointment in two days. I keep waiting for the other shoe to drop, so to speak. This is one of the most watched babies EVER. I have some high risk factors and because of that I see a nutritionist, an OB/GYN and a maternal fetal medicine doctor every four weeks, at this stage. Our chances of having another child with a heart condition are increased, but only by 1 or 2 percent, which is an odd I like. Everything looks great, thankfully! And yet there's a part of me that wants to add "so far" to that last sentence.
Blaze's life, the miracle God granted us with Blaze, increased our faith and grew us closer as a family, but it was not an easy journey to get there. We not only went through his heart condition challenge, but there were other issues in our personal lives going on...like transmissions (yes, plural)going out.. that made life extra daunting. And that was just one of the challenges. It felt like life was throwing everything it could against us, and again with this pregnancy we've been experiencing a very challenging season of life.
So, I'm asking very humbly, for your prayers. I know with all that is in me that God is in control, He loves us and has a plan to prosper our family, to give us hope and a future, and I'm clinging to that right now.
There's a song that Third Day sings that has helped during this time. The song is, "I need a Miracle" and the chorus goes:
Well no matter who you are
And no matter what you've done
There will come a time
When you can't make it on your own
And in your hour of desperation
Know you're not the only one
Prayin' "Lord above, I need a miracle"
So, dear friends and prayer partners, I always strive to be honest and open with you. So, in the interest of being transparent, I just wanted to share the concerns I have and what's on my heart right now. I'm struggling a bit and would appreciate your prayers. Thank you for continuing to pray and support our family. We are so incredibly blessed to have you in our lives.
"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight." Proverbs 3:5-6
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