Ok. I am full of restless energy tonight and I thought I would take it out on you guys. Yes, all three of you! ;-) I don't even know who reads my entries but, you are in for a humdinger tonight!! Maybe.
So, this "heart world" sure can take you for a ride. One minute, you are celebrating a victory and the next, you're trying to figure out what hit you b/c things change like *snaps* that.
Rest easy- Ethan is 100% A-ok. He is presently snoozing on the futon. YES, the futon (in his room). He has decided his crib is meant for WWF type moves and not for sleeping! I don't have to worry about him falling off the futon b/c it slopes toward the back so he's as snug as a bug in a rug. I love that kid so much. I got to spend all day with him (We were out all afternoon, just he and I and then Dillon is not feeling well, so once he got home from work, Ethan and I had more adventures on our own) and it was so much fun just watching him. We went to Chick-fil-a and after getting a few pieces of chicken and fruit into him, we headed into the play area. There were some older kids in there (the eldest being 6) and he had a BLAST! Someone was looking at our house today, so we had to be out for 2 hours. Usually, on days like this, we end up at good ol CFA (I'm surprised they don't have a booth named after us) and that means plenty of playmates for Ethan. We actually met a little boy who is a day younger than him! He was a firecracker and loved doing what the big boys were doing. I'm kinda thankful Ethan is a bit more reserved (now, if he were alone, he would have been jumping all over the place). I was a tad nervous that someone was going to get hurt, but they all did well. After that, we took a break to "eat more chikin" and then more playing. This time, his playmates were little girls. He LOVES little girls! I rested a bit easier b/c they weren't anywhere near as wild as those boys were! He had a great time. He had such a good time that he fell asleep while we were shopping at Target! Yup. Leaned right over on the handlebar of the shopping cart and nodded right off into dreamland. Poor kid! Once we got home, though, it was full-speed ahead and we played outside the rest of the afternoon.
Ok- back to what spurred me to write. I just wanted to make sure you guys knew Ethan was good.
"My" heart babies. They are mine because I pray for them, think about them, worry about them, weep for them, get excited when I see their pictures and want to buy stuff for them, just like a mom. Of course, I have NO WAY of knowing exactly what their mommies and daddies are going through, so don't get me wrong there! I just want you to realize how much I love these precious ones. Yes, even ones I have not met. I rejoice when things go well and cry and rail when they do not. Today hasn't been a day of rejoicing for at least two of "my" kiddos.
Little Bowen had been doing pretty well, heart-wise but just hasn't been able to have a good, steady blood sugar reading. His is waaaaay too low. Doctors are trying to figure out the cause and have even mentioned possibly transferring him to another hospital, which sent his parents reeling b/c they never imagined being in the hospital for as long as they have. Something I have realized is that, even though the "heart stuff" works itself out (for the most part), something else seems to crop up whether it's feeding issues or something else. It kind of waylays you (is that the proper spelling?). I know that Matt and Sarah are missing their daughters a lot and don't want to spend more time away from them than they have to. They had asked for prayers to that end and then today, Bowen started having seizures :-(. At the time Matt updated, he was acting normal but they think he could have had a stroke. I did some reading about hypoglycemia in infants and saw that seizures and other issues are part of the "side effects." Oh please, won't you pray with me that this was a one-time thing and that there are no lingering effects from what happened today? Pray that the doctors will figure out why his blood sugar is so low and find a remedy for it. Pray that Matt and Sarah will feel the peace that passes all understanding and that they would feel God holding them close.
Nathan has been doing fairly well. He continued to battle fluid build up and some other things (had to have a couple heart caths and a stent placed) but was able to feed from a bottle nipple a few times (even drank 40ccs of formula out of one! That is half of one of his feeds!!! Otherwise, he gets his nutrition via his g-button) Well, he was grouchy and fussy the past couple of days and ended up needing a blood transfusion today. He also had a bit more fluid than they'd like so they gave him an extra dose of IV diuretics. The IV is something he needs to get off of in order to go home, as well as learn to breathe using the home vent (different settings than the hospital vent). He was able to practice 4 hours yesterday but tuckered out. Because of how rough he had it today, they didn't want to push him. Please pray that things go back on the upswing for him. He's been in the hospital every day of his 4 months of life. He also has only had one of the three stages of surgery to restructure his heart (both he and Bowen were born with Hypoplastic Left Heart Syndrome), and the 2nd stage usually happens around 6 months of age. His parents would like to have him home for a little bit prior to that, if possible.
UPSWING ALERT! Greta has been having a great couple of days!! If you recall (I think I wrote about it), she was having a terrible time, post-Fontan, with fluid issues. I mean, they were pulling up to 600cc's of fluid off her little body! She had a couple of procedures (and heart caths) and something finally worked! She's starting to eat again and has no chest tubes and even removed her oxygen (yes, SHE removed it) last night. Her sats stayed where they need to be, so she's officially tube-free! They are hoping she gets to go home in the next couple of days. That would be WONDERFUL!!
So, after writing all that, I don't feel as jittery as I did when I started. I just feel like shouting from the rooftops for everyone to stop what they are doing and pray for these babies. 1 in 100 babies is born with a heart defect. It's estimated that 9 die per day. NINE babies. Every day. I just think about this and it slays me. One thing that has been plaguing me lately is this. Think about your child being born- maybe he/she was diagnosed prior to, maybe not- and then going through surgery and fighting through so many things and then not making it. How in the world do these parents cope? I know two very strong women who experienced this recently. I'm not sure I'll ever be brave enough to ask. I mean, it ripped my heart inside out when we found out about Ethan- both for his first surgery and his second. His second was so hard for us b/c he was 4 months old and we'd really bonded with him. We were terrified of losing him. Praise God that it wasn't his time and he made it through everything and is still with us. I am praying the same for the babies mentioned above. There are also several others that I've "met" via prayer requests online, whether it be Facebook, a blog or Twitter. Annabelle is having her Glenn procedure tomorrow morning. Another little one, Logan, is being transferred to another hospital to undergo a procedure soon, as his heart isn't in good shape right now.
Please pray for these and for the others out there yet to be diagnosed.
Thank you!!!
Thursday, October 21, 2010
Tuesday, October 19, 2010
The Seven Minute Difference
I was recently given a couple of materials to peruse and review. This is the first time I've actually been asked for a "formal" review about something and, I'll be honest, I'm a bit nervous. Bear with me :-)
Allyson Lewis has written a few books and I've had the privilege of reading The Seven Minute Difference over the past few weeks. To be honest, I have had the book for quite a while but just haven't found solid time to really "dig" into it til just about a week ago.
"The Seven Minute Difference." In this "microwave" society, the thought of something having an impact in just seven minutes (the average attention span of people- yes, I learned that from the book!) is quite intriguing, especially for this busy mom of a zany almost-two-year-old boy! Sign me up!
Ahhh. Were you thinking about a quick fix? This is a book, silly! The "Seven Minutes" part is only a fraction of the whole enchilada that Allyson lays out for us. It is the main ingredient, if you will, but we are talking about changing how you look at life and how you look at yourself. Where are you now and where do you want to be? What is your purpose in life? Oh wait. Too heavy? Well, I thought so, too, but we must take time to sit and really think about this kind of stuff if we want to do more than just eke our way through life.
This book is pretty much geared for professionals and entrepreneurs. People who run a business. Wait. People who run businesses manage people, right? They work with budgets, yes? They try to maximize efficiency and productivity, oftentimes wearing different hats. Hold on. Sounds like a position I'm familiar with. BEING A MOM! Ok. So, I read on and gleaned a lot of information- not only from this book but about myself. Yes, it's kind of like homework so be prepared to sit down in a quiet place and have something handy to write with. Better yet, break out your handy dandy "7 Minute Life Daily Planner." Don't have one? It's set to hit the shelves on 10/21 and is the perfect companion to Ms. Lewis' book I mentioned earlier. I have used both a notebook and the planner so far.
I haven't finished the book yet. I am only halfway through. I will admit that a couple of chapters didn't appeal to me because they did seem to be business-oriented (dealing with clients, networking successfully, etc) but I can tell you that some of the concepts presented gave me some ideas for the non-profit I help out with.
Would I, as a mom, purchase this book/planner? To be honest, I probably wouldn't. I am super-blessed it was given to me because I have learned a lot from it. The very first thing Allyson asks of us is to think about our purpose in life. Have you ever really sat and thought about that? She encourages us to look at our strengths and ways we can enhance them. Negativity? Get that out of your life! "Your negative illusions do not define you." Those criticisms you have for yourself? She asks how you think your loved ones around you would feel if you pointed out each and every one of their faults in the same manner you chide yourself. Wow. That is really some food for thought. She implores us to dream big: "Our dreams influence our actions and therefore help form the blueprint of our lives." This book has really given me the opportunity to sit and reflect on who I am and where I'm going. Goal-setting has always been really hard for me but she makes it easier by implementing things called "micro-actions." These micro-actions help give us momentum to plow through what used to be our mundane lives.
Passion. Dreams. Service. Priorities. Goals. Success. There is no room for failure or to dwell on past mistakes. Allyson provides the tools we need to get moving with our lives by not only sharing her experiences but also giving us another tool for achieving our life's purpose: "The 7 Minute Life Daily Planner." We must de-clutter not only our thoughts but our desks and our schedules and this book is something she devised to assist in this endeavor. It is broken down into 90 day segments because, she notes, in the business world, 90 days is plenty of time to gauge if a plan is working and goals are being met. It's also short enough to maintain motivation. I am just now getting into using the planner, but I hope to have some more feedback on it for you guys, soon. Just flipping through it has me kind of excited. There are pages devoted to sorting through mental clutter, daily progress reports where you can jot down those you've networked with, unfinished tasks and even how much water and exercise you got on a particular day! She leaves no stone unturned! We will see if it jibes with my "Stay-At-Home-Mom-ness."
Thanks for reading! Stay tuned for more!
[EDIT] I forgot to put the link in for the book/planner! Please click here to read more!
Amy
Allyson Lewis has written a few books and I've had the privilege of reading The Seven Minute Difference over the past few weeks. To be honest, I have had the book for quite a while but just haven't found solid time to really "dig" into it til just about a week ago.
"The Seven Minute Difference." In this "microwave" society, the thought of something having an impact in just seven minutes (the average attention span of people- yes, I learned that from the book!) is quite intriguing, especially for this busy mom of a zany almost-two-year-old boy! Sign me up!
Ahhh. Were you thinking about a quick fix? This is a book, silly! The "Seven Minutes" part is only a fraction of the whole enchilada that Allyson lays out for us. It is the main ingredient, if you will, but we are talking about changing how you look at life and how you look at yourself. Where are you now and where do you want to be? What is your purpose in life? Oh wait. Too heavy? Well, I thought so, too, but we must take time to sit and really think about this kind of stuff if we want to do more than just eke our way through life.
This book is pretty much geared for professionals and entrepreneurs. People who run a business. Wait. People who run businesses manage people, right? They work with budgets, yes? They try to maximize efficiency and productivity, oftentimes wearing different hats. Hold on. Sounds like a position I'm familiar with. BEING A MOM! Ok. So, I read on and gleaned a lot of information- not only from this book but about myself. Yes, it's kind of like homework so be prepared to sit down in a quiet place and have something handy to write with. Better yet, break out your handy dandy "7 Minute Life Daily Planner." Don't have one? It's set to hit the shelves on 10/21 and is the perfect companion to Ms. Lewis' book I mentioned earlier. I have used both a notebook and the planner so far.
I haven't finished the book yet. I am only halfway through. I will admit that a couple of chapters didn't appeal to me because they did seem to be business-oriented (dealing with clients, networking successfully, etc) but I can tell you that some of the concepts presented gave me some ideas for the non-profit I help out with.
Would I, as a mom, purchase this book/planner? To be honest, I probably wouldn't. I am super-blessed it was given to me because I have learned a lot from it. The very first thing Allyson asks of us is to think about our purpose in life. Have you ever really sat and thought about that? She encourages us to look at our strengths and ways we can enhance them. Negativity? Get that out of your life! "Your negative illusions do not define you." Those criticisms you have for yourself? She asks how you think your loved ones around you would feel if you pointed out each and every one of their faults in the same manner you chide yourself. Wow. That is really some food for thought. She implores us to dream big: "Our dreams influence our actions and therefore help form the blueprint of our lives." This book has really given me the opportunity to sit and reflect on who I am and where I'm going. Goal-setting has always been really hard for me but she makes it easier by implementing things called "micro-actions." These micro-actions help give us momentum to plow through what used to be our mundane lives.
Passion. Dreams. Service. Priorities. Goals. Success. There is no room for failure or to dwell on past mistakes. Allyson provides the tools we need to get moving with our lives by not only sharing her experiences but also giving us another tool for achieving our life's purpose: "The 7 Minute Life Daily Planner." We must de-clutter not only our thoughts but our desks and our schedules and this book is something she devised to assist in this endeavor. It is broken down into 90 day segments because, she notes, in the business world, 90 days is plenty of time to gauge if a plan is working and goals are being met. It's also short enough to maintain motivation. I am just now getting into using the planner, but I hope to have some more feedback on it for you guys, soon. Just flipping through it has me kind of excited. There are pages devoted to sorting through mental clutter, daily progress reports where you can jot down those you've networked with, unfinished tasks and even how much water and exercise you got on a particular day! She leaves no stone unturned! We will see if it jibes with my "Stay-At-Home-Mom-ness."
Thanks for reading! Stay tuned for more!
[EDIT] I forgot to put the link in for the book/planner! Please click here to read more!
Amy
What's next on the horizon..
I have another blog entry to post but I feel like I need to tie up some loose ends from my previous entry one.
A lot has transpired since I last wrote. Probably the most impactful was that Joshua and Ewan both earned their wings. Their hearts were made whole by the One who let us borrow them on this earth for a bit. Oh, you may ask, "Why give them life and then take it away?" Let me tell you that these two boys did more in their short days on this earth than many of us will in our lifetime. They have truly left a legacy. Yes, it hurts (It literally tore my heart in pieces and I can not FATHOM what it did to their mothers'!) but both moms were gracious enough to invite us on their journeys from birth to death- and I have seen miracles. Even though God didn't heal them like we would have wished, He did a lot of healing of hearts here on earth through their death.
Jamar got to go home to be with his family in Louisiana. I know that was a big blessing to everyone. Last I heard, he was being a bit of a sleep Nazi but doing well ;-).
Greta and Nathan have been duking it out with chest effusions and the like for several weeks. FINALLY it seems that dawn is breaking and things are moving in the right direction. I was able to see Greta this evening at our heart support group meeting and it was good to see her out and about. She is still in the hospital but they already removed her chest tubes and IVs and she's starting to eat again. Nathan has been able to take some formula by mouth for the first time since he was born- which is amazing! It's been baby steps (he's taken in 15ccs at the most), but he's not aspirating any of the milk and seems to be tolerating it well. They don't want to push him, but have allowed him to do a couple of feeds a day like this (he gets most of his nutrition via a mickey button in his tummy). His mom is meeting with the doctors tomorrow to discuss the plan of action for the future. I sure hope he is able to go home soon!!
Bowen is still doing well despite some feeding issues and low blood sugar. They did some genetic testing but I haven't heard if they got the results back on it. Just continue to pray he feeds well and the sugar thing gets under control soon so he can go home! Let's ask God to let him do this in time for Halloween so he can dress up with his sisters!
Lastly, Ethan may be coming down with something. He woke from his nap today barking like a sea lion. It was so strange. He was fine this morning and then all day before his nap (2:30pm). Not a runny nose- nothing. I let him go to the support group meeting tonight b/c once he woke up and got moving, he was fine. No cough. No whining. Nothing out of the ordinary. At the meeting, he romped and played. We got home and he was fine. Put him to bed and 2 hours later I hear the bark and then a cry. I go in and I was afraid he was having an asthma attack (he does not have asthma but Dillon and I both did as children)!!! He wasn't. His breathing was fine, sans a little "snottiness." Oh boy. No fever (same as today). Just the barking. He was pretty scared and wanted me in there for a few minutes. I have almost talked myself into just sleeping in his room tonight. The problem with that is, he's decided the past few days that he needs to sleep on the futon in his room instead of in his bed. Mommy will have to bunk in the floor. I guess we'll see if he wakes again before I go to bed (it's already midnight- I should be heading there soon but I have another entry to post!).
Talk to ya in like a minute!
A lot has transpired since I last wrote. Probably the most impactful was that Joshua and Ewan both earned their wings. Their hearts were made whole by the One who let us borrow them on this earth for a bit. Oh, you may ask, "Why give them life and then take it away?" Let me tell you that these two boys did more in their short days on this earth than many of us will in our lifetime. They have truly left a legacy. Yes, it hurts (It literally tore my heart in pieces and I can not FATHOM what it did to their mothers'!) but both moms were gracious enough to invite us on their journeys from birth to death- and I have seen miracles. Even though God didn't heal them like we would have wished, He did a lot of healing of hearts here on earth through their death.
Jamar got to go home to be with his family in Louisiana. I know that was a big blessing to everyone. Last I heard, he was being a bit of a sleep Nazi but doing well ;-).
Greta and Nathan have been duking it out with chest effusions and the like for several weeks. FINALLY it seems that dawn is breaking and things are moving in the right direction. I was able to see Greta this evening at our heart support group meeting and it was good to see her out and about. She is still in the hospital but they already removed her chest tubes and IVs and she's starting to eat again. Nathan has been able to take some formula by mouth for the first time since he was born- which is amazing! It's been baby steps (he's taken in 15ccs at the most), but he's not aspirating any of the milk and seems to be tolerating it well. They don't want to push him, but have allowed him to do a couple of feeds a day like this (he gets most of his nutrition via a mickey button in his tummy). His mom is meeting with the doctors tomorrow to discuss the plan of action for the future. I sure hope he is able to go home soon!!
Bowen is still doing well despite some feeding issues and low blood sugar. They did some genetic testing but I haven't heard if they got the results back on it. Just continue to pray he feeds well and the sugar thing gets under control soon so he can go home! Let's ask God to let him do this in time for Halloween so he can dress up with his sisters!
Lastly, Ethan may be coming down with something. He woke from his nap today barking like a sea lion. It was so strange. He was fine this morning and then all day before his nap (2:30pm). Not a runny nose- nothing. I let him go to the support group meeting tonight b/c once he woke up and got moving, he was fine. No cough. No whining. Nothing out of the ordinary. At the meeting, he romped and played. We got home and he was fine. Put him to bed and 2 hours later I hear the bark and then a cry. I go in and I was afraid he was having an asthma attack (he does not have asthma but Dillon and I both did as children)!!! He wasn't. His breathing was fine, sans a little "snottiness." Oh boy. No fever (same as today). Just the barking. He was pretty scared and wanted me in there for a few minutes. I have almost talked myself into just sleeping in his room tonight. The problem with that is, he's decided the past few days that he needs to sleep on the futon in his room instead of in his bed. Mommy will have to bunk in the floor. I guess we'll see if he wakes again before I go to bed (it's already midnight- I should be heading there soon but I have another entry to post!).
Talk to ya in like a minute!
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