Hi Guys,
So today was a great day! We got moved out of the cardiac ICU and back downstairs to the "step down unit". This place is like a 5 star hotel compared to the ICU; peace and quiet for Madi, a bed for mama, a bathroom for showering and room for more than two people! What else could you ask for! Don't get me wrong the ICU is a great place for Madi when needed but we're happy to be outa there for now!
We don't really know what "the plan" is for her just yet, we should know more Monday. The dr's haven't scheduled a pacemaker surgery because her heart has been acting a lot better and not had major rhythm problems so we'll see! She might, she might not. The new meds she is on seem to be helping her heart feel better so that's great!
Other than that Madi is doin just fine, she too is happy to be out of ICU and perked up once we were downstairs. She did get her darn feeding tube put back in yesterday which is sort of bittersweet; it will help her gain weight which is wonderful but hopefully she won't forget how to eat like she did last time. All I have to remind myself of is that it's not a life threatening issue, we have other things to worry about besides a little feeding tube!!
So, right now we're just in a holding pattern till we find out more Monday. Hope you all had a great Thanksgiving, we actually had a really great one in ICU, one we will cherish forever :) Our parents made a whole Thanksgiving dinner for us and carried it in so we could all be together, same as always just different surroundings so it ended up great! We even watched the dog show and Madi got to see "Kodiak" win the working group, hehehe :)
As always, thanks for your thoughts and prayers!
Love Tabi
Friday, November 25, 2011
Saturday, November 19, 2011
.8 seconds is too long.....
Hey Guys,
So unfortunately I'm writing today's update from the cardiac ICU :(. Nothing really happened the Dr's just noticed something on Madi's heart monitor that they hadn't previously noticed (was actually there the whole time) and felt she would be safer in the ICU, so here we are! This latest information actually told the dr's that yes, Madi does need a pacemaker. What is crazy is that .8 seconds made it evident that she needed a pacemaker. why .8 seconds do you ask? Well, for 2.8 seconds her heart randomly stopped beating, if it was anything under 2 seconds it would be normal but because it's 2.8 she must have the pacemaker because there's no way to know how much longer that 2.8 seconds could last and we don't want to find out, so while we wait for surgery, the amazing folks here in the ICU will watch her like a hawk and make sure that doesn't happen!
I can't tell you how sick we are of cardiac ICU's; we keep wondering when this will stop for Madi and when will she catch a break? But then again we stop and remind ourselves how far God has brought us all and never failed! He has a plan (we keep wondering what the heck that plan is!) but all we have to do is trust! This is much easier said than done when you're told that your innocent baby girl has to have heart surgery for the fourth time but like Austin reminded me, we came in for a routine visit on Monday and God made it apparent at that moment that something was wrong! Her heart rhythm problems are very spuratic so sometimes it's perfectly fine and sometimes it's not, so to catch her just right at a time when her heart was being funky is a miracle in itself!!! We easily could have left that appointment and never known until something major happened. This has been the case with almost all of her surgeries, we thought all was well until God intervened and pointed something out to the doctors that needed fixing. Like I said, He has been watching over her and continues to do so, so thank you for lifting her up in prayer because it is working every single day!
In the mean time, she is just snoozing in her crib right now after a morning of Mickey Mouse clubhouse, toys, Cheerios and a sponge bath, so all is well! I know a lot of you have asked how you can help and honestly since my parents are here (thank goodness) we are doing just fine and able to take care of logistics of being in the hospital but the best thing you can do is just continue to pray for her as you always have and she will be just fine. Although she is small, she is stronger and more resilient than you would ever imagine, it's quite "miraculous" actually. Like I said the other day, I'm so glad she has no clue what is going on and is content with her surroundings for the time being.
We won't find out a surgery date till Monday and we might possibly go to cath before that but we'll know more in a couple days! Until then thank you for your love, support and prayers!!!
Love the Fleaks :)
So unfortunately I'm writing today's update from the cardiac ICU :(. Nothing really happened the Dr's just noticed something on Madi's heart monitor that they hadn't previously noticed (was actually there the whole time) and felt she would be safer in the ICU, so here we are! This latest information actually told the dr's that yes, Madi does need a pacemaker. What is crazy is that .8 seconds made it evident that she needed a pacemaker. why .8 seconds do you ask? Well, for 2.8 seconds her heart randomly stopped beating, if it was anything under 2 seconds it would be normal but because it's 2.8 she must have the pacemaker because there's no way to know how much longer that 2.8 seconds could last and we don't want to find out, so while we wait for surgery, the amazing folks here in the ICU will watch her like a hawk and make sure that doesn't happen!
I can't tell you how sick we are of cardiac ICU's; we keep wondering when this will stop for Madi and when will she catch a break? But then again we stop and remind ourselves how far God has brought us all and never failed! He has a plan (we keep wondering what the heck that plan is!) but all we have to do is trust! This is much easier said than done when you're told that your innocent baby girl has to have heart surgery for the fourth time but like Austin reminded me, we came in for a routine visit on Monday and God made it apparent at that moment that something was wrong! Her heart rhythm problems are very spuratic so sometimes it's perfectly fine and sometimes it's not, so to catch her just right at a time when her heart was being funky is a miracle in itself!!! We easily could have left that appointment and never known until something major happened. This has been the case with almost all of her surgeries, we thought all was well until God intervened and pointed something out to the doctors that needed fixing. Like I said, He has been watching over her and continues to do so, so thank you for lifting her up in prayer because it is working every single day!
In the mean time, she is just snoozing in her crib right now after a morning of Mickey Mouse clubhouse, toys, Cheerios and a sponge bath, so all is well! I know a lot of you have asked how you can help and honestly since my parents are here (thank goodness) we are doing just fine and able to take care of logistics of being in the hospital but the best thing you can do is just continue to pray for her as you always have and she will be just fine. Although she is small, she is stronger and more resilient than you would ever imagine, it's quite "miraculous" actually. Like I said the other day, I'm so glad she has no clue what is going on and is content with her surroundings for the time being.
We won't find out a surgery date till Monday and we might possibly go to cath before that but we'll know more in a couple days! Until then thank you for your love, support and prayers!!!
Love the Fleaks :)
Thursday, November 17, 2011
The Latest
Hi There,
Just thought I would give another Madi update today since its been a couple days since I last posted. Thank you all for your thoughts, prayers and sweet comments, that is so nice of you all! Madi is doing just fine here at the hospital, right now she is still being monitored for abnormal heart rhythms because she's had a few episodes during the last two nights that are concerning, she's fine during the day, it's just when she (and her little heart) get sleepy they both try to drift in to a deep sleep!! It hasn't caused any problems yet but dr's just don't want it to get worse. So, they've taken her off some medications she was on that can cause these sort of problems and hope that will help, if not she may have to get a pacemaker, which, unfortunately is another full blown surgery for her.......ugh! But, her heart is acting happier today just as I sit here and watch her rhythm on the monitor I can see the rhythm problems are a lot better today than yesterday so hopefully that is a good sign!
Anyway, I am beyond thankful that she has no idea what is going on, she just thinks we are at a boring hotel that doesn't allow dogs and has mean people that poke you for absolutely no reason sometimes! She doesn't let it bother her, thankfully she just plays with her toys and watches Mickey Mouse Clubhouse all the time!! She's obbssessed with Mickey! It's a blessing that someday I will only have to tell her why she has a scar down her chest, I would hate for her to remember, but it's just another way that God protects her :).
Last night was the first time I had been in our new house even though we bought it on Tuesday (I can't bring myself to leave Madi's room too often, fortunately she has never once been alone at any of her hospital stays thanks to our families). It is so nice to actually live in the same city as the hospital this time, at least I can see my doggies from time to time and do laundry when needed! Huck and Kodiak love the new house, which makes me happy too; Huck can see out the front and back windows from the catwalk thing which he loves and Kodiak has tile everywhere to keep him cool :). Oh yeah, and Austin and I love it too, we did buy it for more than just the dogs amenities, lol. I know I will enjoy it much more once Madi is there, I don't actually even like being there without her, it's just not the same! As I'm typing my mom and dad are there unpacking mountains of boxes as the moving company brought all our stuff just yesterday. Austin was also able to take the whole week off to help with moving, which turned out good since Madi is in the hospital now too. He's been going here, there, and everywhere getting everything situated there and here for us, he's such an amazing daddy and hubby!
Whoa, guess I had a lot more to say than I thought, kind of a long post! Hope you all are well! God makes it apparent everyday that He is watching over Madi so thank you again for your continued prayers!
Love Tabi
Just thought I would give another Madi update today since its been a couple days since I last posted. Thank you all for your thoughts, prayers and sweet comments, that is so nice of you all! Madi is doing just fine here at the hospital, right now she is still being monitored for abnormal heart rhythms because she's had a few episodes during the last two nights that are concerning, she's fine during the day, it's just when she (and her little heart) get sleepy they both try to drift in to a deep sleep!! It hasn't caused any problems yet but dr's just don't want it to get worse. So, they've taken her off some medications she was on that can cause these sort of problems and hope that will help, if not she may have to get a pacemaker, which, unfortunately is another full blown surgery for her.......ugh! But, her heart is acting happier today just as I sit here and watch her rhythm on the monitor I can see the rhythm problems are a lot better today than yesterday so hopefully that is a good sign!
Anyway, I am beyond thankful that she has no idea what is going on, she just thinks we are at a boring hotel that doesn't allow dogs and has mean people that poke you for absolutely no reason sometimes! She doesn't let it bother her, thankfully she just plays with her toys and watches Mickey Mouse Clubhouse all the time!! She's obbssessed with Mickey! It's a blessing that someday I will only have to tell her why she has a scar down her chest, I would hate for her to remember, but it's just another way that God protects her :).
Last night was the first time I had been in our new house even though we bought it on Tuesday (I can't bring myself to leave Madi's room too often, fortunately she has never once been alone at any of her hospital stays thanks to our families). It is so nice to actually live in the same city as the hospital this time, at least I can see my doggies from time to time and do laundry when needed! Huck and Kodiak love the new house, which makes me happy too; Huck can see out the front and back windows from the catwalk thing which he loves and Kodiak has tile everywhere to keep him cool :). Oh yeah, and Austin and I love it too, we did buy it for more than just the dogs amenities, lol. I know I will enjoy it much more once Madi is there, I don't actually even like being there without her, it's just not the same! As I'm typing my mom and dad are there unpacking mountains of boxes as the moving company brought all our stuff just yesterday. Austin was also able to take the whole week off to help with moving, which turned out good since Madi is in the hospital now too. He's been going here, there, and everywhere getting everything situated there and here for us, he's such an amazing daddy and hubby!
Whoa, guess I had a lot more to say than I thought, kind of a long post! Hope you all are well! God makes it apparent everyday that He is watching over Madi so thank you again for your continued prayers!
Love Tabi
Tuesday, November 15, 2011
What a Day.......
Hi Guys,
Madi is doing just fine but unfortunately yesterday's visit to the cardiology clinic landed us being admitted to the hospital :( We took her in for an echo but and when we got there her heart rate was a little low so they did an EKG and her heart rhythm was concerning as it wasn't really a normal rhythm at all! So, with that we got admitted to try and figure it out. The good news is that after drawing some labs we found out she had a low potassium level which is most likely what was causing the rhythm problems! Yay! Anybody would have rhythm problems with a low potassium level, so they just gave her some and her rhythm seems to be much better now :).
So, now we will just wait and see what the doctors say today, they may keep her for more observation but they may also keep her and send her to the cath lab to learn more about all her other issues while she's here. Besides the little rhythm disturbance yesterday her heart hasn't shown significant improvement since our move to sea level so the cath lab would give us a more accurate picture of what's going on and what to do about it!
So, in the mean time my AMAZING parents got on a plane yesterday and flew to Houston in the blink of an eye to help us as we have to close on our new house today! What would I do without them! ..........I really have no idea! And ........I can't forget about our friends Adam and Erin, they were so nice to take in our doggies for a night so they weren't locked up in a darn hotel room forever while we are at the hospital, thank you guys!!!!! I love those dogs so much and always worry about them when we're at the hospital, so that is just one less thing to worry about!
Anyway, a lot has happened in 24 hours but we are doing just fine and Madi is great right now :). Thanks as always for the thoughts and prayers!
Love Tabi
Madi is doing just fine but unfortunately yesterday's visit to the cardiology clinic landed us being admitted to the hospital :( We took her in for an echo but and when we got there her heart rate was a little low so they did an EKG and her heart rhythm was concerning as it wasn't really a normal rhythm at all! So, with that we got admitted to try and figure it out. The good news is that after drawing some labs we found out she had a low potassium level which is most likely what was causing the rhythm problems! Yay! Anybody would have rhythm problems with a low potassium level, so they just gave her some and her rhythm seems to be much better now :).
So, now we will just wait and see what the doctors say today, they may keep her for more observation but they may also keep her and send her to the cath lab to learn more about all her other issues while she's here. Besides the little rhythm disturbance yesterday her heart hasn't shown significant improvement since our move to sea level so the cath lab would give us a more accurate picture of what's going on and what to do about it!
So, in the mean time my AMAZING parents got on a plane yesterday and flew to Houston in the blink of an eye to help us as we have to close on our new house today! What would I do without them! ..........I really have no idea! And ........I can't forget about our friends Adam and Erin, they were so nice to take in our doggies for a night so they weren't locked up in a darn hotel room forever while we are at the hospital, thank you guys!!!!! I love those dogs so much and always worry about them when we're at the hospital, so that is just one less thing to worry about!
Anyway, a lot has happened in 24 hours but we are doing just fine and Madi is great right now :). Thanks as always for the thoughts and prayers!
Love Tabi
Saturday, November 12, 2011
New Beginnings
Hi All!
Well, I decided to start a blog to document this journey we've been on for over a year now, actually 15 months to be exact! I thought it would be a good way to let friends and family know what we're up to and how our little Madi is doing (and let Mommy vent from time to time!) . We're in Houston now and doing pretty good, just anxious to close on our new house (next week!) and find out what is going on with Madi's little heart.
We left Wyoming about a month ago after finding out that Madi wasn't doing as well as we thought and had actually gotten worse since her last visit in July. Even though her last surgery in May had proven to be a success we found out in September that her little "engine that could" wasn't functioning all too well :(. This was sad news after all she endured in May but she didn't seem to care much, actually loved being in the hospital for a week and ordered everything she wanted off the room service menu! When we got home from the hospital we waited to hear from the doctors on what to do next and they said they thought her lungs were actually making her little heart sick and the lower elevation would help both get better over time! Whew.....what a relief! So, here we are! Closing on our house in three days!
Words cannot describe how blessed we feel to have relocated so quickly and easily, this is truly Gods work! Madi has already had one echo which showed no change, so the doctors gave her two more weeks to prove herself; time is up on Monday and we'll see if there have been any positive changes since then. If so, thats wonderful!!!!! If not, we will take the next steps necessary to get her better! Please continue to pray for her as God is always with her and has never left her side. He has been faithful and will continue to be, we only have to Trust in His will! He has brought us to one of the best pediatric heart centers in the world for a reason and for that we thank Him!!
In the mean time, she is full of spunk and sass and continues to learn more and more each day! I'll keep you updated on how Monday goes! Love you all and thanks for the prayers!
Well, I decided to start a blog to document this journey we've been on for over a year now, actually 15 months to be exact! I thought it would be a good way to let friends and family know what we're up to and how our little Madi is doing (and let Mommy vent from time to time!) . We're in Houston now and doing pretty good, just anxious to close on our new house (next week!) and find out what is going on with Madi's little heart.
We left Wyoming about a month ago after finding out that Madi wasn't doing as well as we thought and had actually gotten worse since her last visit in July. Even though her last surgery in May had proven to be a success we found out in September that her little "engine that could" wasn't functioning all too well :(. This was sad news after all she endured in May but she didn't seem to care much, actually loved being in the hospital for a week and ordered everything she wanted off the room service menu! When we got home from the hospital we waited to hear from the doctors on what to do next and they said they thought her lungs were actually making her little heart sick and the lower elevation would help both get better over time! Whew.....what a relief! So, here we are! Closing on our house in three days!
Words cannot describe how blessed we feel to have relocated so quickly and easily, this is truly Gods work! Madi has already had one echo which showed no change, so the doctors gave her two more weeks to prove herself; time is up on Monday and we'll see if there have been any positive changes since then. If so, thats wonderful!!!!! If not, we will take the next steps necessary to get her better! Please continue to pray for her as God is always with her and has never left her side. He has been faithful and will continue to be, we only have to Trust in His will! He has brought us to one of the best pediatric heart centers in the world for a reason and for that we thank Him!!
In the mean time, she is full of spunk and sass and continues to learn more and more each day! I'll keep you updated on how Monday goes! Love you all and thanks for the prayers!
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