Happy New Year to you all!!
Wow, I just can't believe we're entering 2012 already! Where has this year gone! Time flies when you're having fun (and sometimes having not so much fun too!). What can I say about 2011, a lot actually, but for everyone's sanity I'll keep it short and sweet.
2011 has been a year full of ups and downs; the highest of highs and the lowest of lows! It was a year Austin and I celebrated our baby girl being "fixed" two times, Yay!!! And a year of being told three times that she wasn't, yuck! In spite of all this we were able to celebrate Madi's first birthday, which next to the day she was born was one of the best days of our lives! After the year she had, there was cause for a huge celebration! So many family friends came to see her and celebrate with us, it was great! I'll never forget her in that little "Sweet as Can Bee" tutu of hers! She was so adorable! I also will never forget celebrating Thanksgiving and Christmas at Texas Children's, what memories we have made this year! Moments to be cherished, that's for sure. Overall it's been a year of growth for us (well physically not much for Madi but she's gained a little weight here and there hehehe); a year we have had struggles but again come out on top due only to the love God has for us! We will continue to trust in Him everyday of this coming year, knowing that by this time next year, and every year thereafter, we will come out on top! Its going to be a good year once again!
As for how Madi is doing, she continues do well and show everybody how tough she is! Last week we had a few rough days after struggling some with her medication increase, but the dr's got that all sorted out and she's doing well now! It's a balancing act of controlling the negative side effects of the drug while waiting for the positive, so that's the phase we're currently in. We keep hoping to get out of ICU but we're not quite there, getting closer but not just yet. Besides all that, Madi actually took her first steps last week in the ICU!!!!! Now if that isn't overcoming obstacles I don't know what is! It's hard to learn to walk under normal circumstances let alone dragging all these dang cords along with you!! She's so awesome! Not only that but we also learned she is indeed bulletproof as we suspected :). The other day the nurses tried to thread a needle into her skin but it was too tough to go through so it wouldn't work! Crazy huh! We always knew she was "thick skinned" we just didn't know she literally is thick skinned, ha! Anyway, she is as sassy as ever and continues to yell at all of us to tell us what she wants and when she wants it! She shakes her head no to absolutely everything and glares at the doctors and nurses sometimes when they get too close! Everyone around here knows how spunky our girl is, and for good reason! Austin says he knows exactly where she gets her attitude from but I have no idea what he's talking about!
We've had our family here this past week and will have the rest here next week so it's been great to see all of them and for them to see Madi! She's finally starting to know each of their faces and most of their names (i.e. gramsie, nana, auntie, Grama, uncle etc.). We're so blessed to have such a strong support system from not only our immediate family but all of our extended family and friends as well! Thank you all for your Christmas cards and generous gifts, we really appreciate all you have done and continue to do for us! God hears your prayers and watches over our little M&M each and everyday!
I hope you all have a Happy New Year and cherish each day we are given!
Love Tabi
Saturday, December 31, 2011
Thursday, December 22, 2011
Merry Christmas!
Hi Everyone,
Hope you all are well and enjoying the holiday, I can't believe that Christmas is just a few short days away! Where have I been? Oh yeah, in the twilight zone I forgot! Ha! All joking aside, all is going well here in the Cardiac ICU; Madi has done so good with her new medication so far and didn't have any problems with her IV placement! Thank you Lord for protecting her yet again! As with all her dr's, the ones here at Texas Children's are phenomenal and continue to take great care of her. Madi has sparked a lot of discussion among all the dr's here and they have all put their heads together to come up with the best treatment plan. A nurse for one of the surgeons stopped by our room yesterday and told me she has never seen a patient discussed at such length before! Wow! I don't know whether that's good or bad? But I'll be positive and say, the more the merrier! Right?
Anyway, the more we delve into this journey the more I see God's plan unfold. It is no coincidence that three years ago Austin and I ended up in Houston; after graduating college we got married, moved, found an amazing Church called The Waters and made some great friends here, no big deal. We were so excited to move back home to Wyoming not knowing that God had so deliberately laid the ground work for us to come back in a few short years with a miracle baby in toe. We came to Houston this time with a strong church family, a great job for Austin, good insurance (thank goodness) and to top it all off Houston is home to the 4th best children's heart center in the world! None of this has been left to chance, Gods plan is bigger than I ever imagined. Isn't that incredible when you really stop and think about it? I think so! This week I have really felt the Lords prescence, maybe because Jesus' birthday is right around the corner, I dunno! But I just realized that God entrusted Austin and I with spreading the word about Him and the miracles He has performed on "our" little girl, what a task, but I feel up to it for some odd reason and gracious that He chose us!
Madi continues to amaze us and is doing great regardless of what's going on inside. She loves to dance and show off for us and the nurses. She doesn't however, like her physical therapist because she makes her do stuff she doesn't want to do like learn to crawl! We're working on it though, after your chest is opened three times you don't have the upper body strength of most 16 month olds, darn it! But her PT said once she figures it out she'll take off because she's strong enough now :). Other than that, we're just enjoying being germaphobes (this comes quite naturally to me) as Madi can't afford to be sick at all! So, anyone that has been sick or even been around someone sick is not allowed per Madi's pulmonologist. I am on patrol, watch out!
I want to thank you all again for your outpouring of love and support. We are blessed to have so many people praying for us and helping us get through this trying time, but we are making it thanks to all of our friends and family, we wouldn't survive without you! Over the holiday we will be surrounded by our families as they have all decided to come down and celebrate with us! How lucky are we! Can't wait to see Madi's Grandpas, Aunts, Uncles and cousins! I hope you all have a wonderful Christmas and enjoy your time with family!
Love Tabi
Hope you all are well and enjoying the holiday, I can't believe that Christmas is just a few short days away! Where have I been? Oh yeah, in the twilight zone I forgot! Ha! All joking aside, all is going well here in the Cardiac ICU; Madi has done so good with her new medication so far and didn't have any problems with her IV placement! Thank you Lord for protecting her yet again! As with all her dr's, the ones here at Texas Children's are phenomenal and continue to take great care of her. Madi has sparked a lot of discussion among all the dr's here and they have all put their heads together to come up with the best treatment plan. A nurse for one of the surgeons stopped by our room yesterday and told me she has never seen a patient discussed at such length before! Wow! I don't know whether that's good or bad? But I'll be positive and say, the more the merrier! Right?
Anyway, the more we delve into this journey the more I see God's plan unfold. It is no coincidence that three years ago Austin and I ended up in Houston; after graduating college we got married, moved, found an amazing Church called The Waters and made some great friends here, no big deal. We were so excited to move back home to Wyoming not knowing that God had so deliberately laid the ground work for us to come back in a few short years with a miracle baby in toe. We came to Houston this time with a strong church family, a great job for Austin, good insurance (thank goodness) and to top it all off Houston is home to the 4th best children's heart center in the world! None of this has been left to chance, Gods plan is bigger than I ever imagined. Isn't that incredible when you really stop and think about it? I think so! This week I have really felt the Lords prescence, maybe because Jesus' birthday is right around the corner, I dunno! But I just realized that God entrusted Austin and I with spreading the word about Him and the miracles He has performed on "our" little girl, what a task, but I feel up to it for some odd reason and gracious that He chose us!
Madi continues to amaze us and is doing great regardless of what's going on inside. She loves to dance and show off for us and the nurses. She doesn't however, like her physical therapist because she makes her do stuff she doesn't want to do like learn to crawl! We're working on it though, after your chest is opened three times you don't have the upper body strength of most 16 month olds, darn it! But her PT said once she figures it out she'll take off because she's strong enough now :). Other than that, we're just enjoying being germaphobes (this comes quite naturally to me) as Madi can't afford to be sick at all! So, anyone that has been sick or even been around someone sick is not allowed per Madi's pulmonologist. I am on patrol, watch out!
I want to thank you all again for your outpouring of love and support. We are blessed to have so many people praying for us and helping us get through this trying time, but we are making it thanks to all of our friends and family, we wouldn't survive without you! Over the holiday we will be surrounded by our families as they have all decided to come down and celebrate with us! How lucky are we! Can't wait to see Madi's Grandpas, Aunts, Uncles and cousins! I hope you all have a wonderful Christmas and enjoy your time with family!
Love Tabi
Saturday, December 17, 2011
Temporary Home
Hey guys,
So I said I would post more frequently but that didn't pan out too well did it, sorry! Anyway, a lot has changed since the last time I posted but that seems to be the norm around here! We've made this place our temporary home for the last three weeks but Monday we'll be moving out and back upstairs to the cardiac ICU as Madi is being started on a new med that requires her to be in the ICU for a little while. The medication will be a continuous IV drip so she'll get a central line (IV that is placed in a major vein for longer term use) on Monday morning where she'll be sedated for a small amount of time then go up to ICU to begin the new med. She did respond to the last new one they started but not as quickly and as much as they needed her to so we're trying this new one that is stronger and hopefully more effective!
The doctors are pretty certain at this point that she does indeed need a heart transplant :( Unfortunately her lungs aren't in good enough shape to be listed for a transplant and the new med will wip them into shape so she can officially be listed within a few weeks. That is best case scenario so we're hoping for this med to work its wonders :) So for now, we just need prayers for a good outcome with central line placement and response to the new med!
When you put all that aside it is easy to see God's work shining through her each day; she truly is a miracle of life in that her little body has power beyond belief! On paper she really doesn't look very well but when you see her each day she continues to amaze us with her strength. She is progressing in every aspect of life; smiling, talking, waving, clapping, snapping, she's full of it! The only reason we know something is wrong with her is because she gets tired more easily than most babies would. Someday she won't know what to do with all the energy she has, watch out world!
We definitely have only scratched the surface on the journey that lies ahead but all we can do is take it one day at a time, otherwise it's frankly too overwhelming, but I think that is how God intends us to live our lives, for each day, not for yesterday or tomorrow, but today! Again, much easier said than done, but I'm working on it!
It's weird that although I long for the comfort of home I feel an odd sense of community and comfort when we're at the hospital. Out in the "real world" I'm the only one who has a baby with heart problems, I'm the only one whose baby is on oxygen and a feeding tube but in here, I'm not! It's normal to see babies with oxygen and little scars down their chests, it's normal to talk about ventilators and oxygen saturations, it's normal to see parents with the weight of the world of their shoulders. So, although it seems like we're not at home, sometimes I feel more "at home" here than out there! Jeeze, that's when you know you've been in the hospital way too much! Someday I know these feelings will go away, but for now being among others who are going through similar circumstances to us is almost comforting. When Madi is ready we will go home, but for now we are home, it just happens to be at Texas Children's :)
Thank you all for lifting Madi up in prayer, God continues to hear each one of you and brings her through each obstacle we face! I will let you all know how next week goes with the new medication :). Merry Christmas!!!
Love Tabi
So I said I would post more frequently but that didn't pan out too well did it, sorry! Anyway, a lot has changed since the last time I posted but that seems to be the norm around here! We've made this place our temporary home for the last three weeks but Monday we'll be moving out and back upstairs to the cardiac ICU as Madi is being started on a new med that requires her to be in the ICU for a little while. The medication will be a continuous IV drip so she'll get a central line (IV that is placed in a major vein for longer term use) on Monday morning where she'll be sedated for a small amount of time then go up to ICU to begin the new med. She did respond to the last new one they started but not as quickly and as much as they needed her to so we're trying this new one that is stronger and hopefully more effective!
The doctors are pretty certain at this point that she does indeed need a heart transplant :( Unfortunately her lungs aren't in good enough shape to be listed for a transplant and the new med will wip them into shape so she can officially be listed within a few weeks. That is best case scenario so we're hoping for this med to work its wonders :) So for now, we just need prayers for a good outcome with central line placement and response to the new med!
When you put all that aside it is easy to see God's work shining through her each day; she truly is a miracle of life in that her little body has power beyond belief! On paper she really doesn't look very well but when you see her each day she continues to amaze us with her strength. She is progressing in every aspect of life; smiling, talking, waving, clapping, snapping, she's full of it! The only reason we know something is wrong with her is because she gets tired more easily than most babies would. Someday she won't know what to do with all the energy she has, watch out world!
We definitely have only scratched the surface on the journey that lies ahead but all we can do is take it one day at a time, otherwise it's frankly too overwhelming, but I think that is how God intends us to live our lives, for each day, not for yesterday or tomorrow, but today! Again, much easier said than done, but I'm working on it!
It's weird that although I long for the comfort of home I feel an odd sense of community and comfort when we're at the hospital. Out in the "real world" I'm the only one who has a baby with heart problems, I'm the only one whose baby is on oxygen and a feeding tube but in here, I'm not! It's normal to see babies with oxygen and little scars down their chests, it's normal to talk about ventilators and oxygen saturations, it's normal to see parents with the weight of the world of their shoulders. So, although it seems like we're not at home, sometimes I feel more "at home" here than out there! Jeeze, that's when you know you've been in the hospital way too much! Someday I know these feelings will go away, but for now being among others who are going through similar circumstances to us is almost comforting. When Madi is ready we will go home, but for now we are home, it just happens to be at Texas Children's :)
Thank you all for lifting Madi up in prayer, God continues to hear each one of you and brings her through each obstacle we face! I will let you all know how next week goes with the new medication :). Merry Christmas!!!
Love Tabi
Wednesday, December 7, 2011
Shout it from the rooftops!
Hi Everybody,
This is a verse I repeat to myself daily that keeps me going from day to day, it's an easy one to memorize that's why I like it!
"Trust in the Lord with all your heart; do not depend on your own understanding.". Proverbs 3:5
On that note, I just wanted to let you know that God has answered all of our prayers and Madison has responded to her new medications quite nicely!! If that doesn't deserve an Amen, Hallelujah, Praise the Lord I don't know what does! He has yet again performed another miracle on our little M&M :)
What does that mean now? Well, it means that next week we'll go to the cath lab (this will be her fourth trip) where dr's will look at all the pressures in her heart, look at her valves, lung arteries etc. and see what's really going on. If things look like they did on her echo that she had on Monday we're hopefully looking at a valve repair surgery and not transplant which would be sooooooo much better!! I never thought I would be so excited for another heart surgery but hey, it's all relative right! In the mean time we just wait till next week and pray for a good trip to the cath lab :)
I want to shout it from the rooftops and let everyone know how much their prayers are working and to please keep them coming!! God is faithful!
Oh and last week I remember posting how I couldn't survive without our moms but I forgot to mention something else, I forgot to mention this rock that holds me up each day, this Angel who keeps me going, this comedian that makes me laugh in the darkest moments, this provider who gives Madi and I everything we ever need or want, this man who treats me like a queen, this person who is my best friend and soul mate, what is this something I forgot to mention? Well, it's my hubby, Austin of course (sorry I forgot you hon). When I started dating him almost ten years ago I never knew we would go through something like this but God knew way back then we would be the perfect team to weather this storm. There's no way I could have made it through the past 16 months without him by my side :)
We continue to do well here at the hospital, the days actually go by pretty fast which is nice. We've had wonderful friends and family that continue to visit and keep us company. The four of us girls (Madi, mama, Gramsie and Grama) are becoming familiar faces to all the dr's and nurses which they are all very nice and friendly.
Hope you all are well, and enjoying the Christmas season :)
Love Tabi
This is a verse I repeat to myself daily that keeps me going from day to day, it's an easy one to memorize that's why I like it!
"Trust in the Lord with all your heart; do not depend on your own understanding.". Proverbs 3:5
On that note, I just wanted to let you know that God has answered all of our prayers and Madison has responded to her new medications quite nicely!! If that doesn't deserve an Amen, Hallelujah, Praise the Lord I don't know what does! He has yet again performed another miracle on our little M&M :)
What does that mean now? Well, it means that next week we'll go to the cath lab (this will be her fourth trip) where dr's will look at all the pressures in her heart, look at her valves, lung arteries etc. and see what's really going on. If things look like they did on her echo that she had on Monday we're hopefully looking at a valve repair surgery and not transplant which would be sooooooo much better!! I never thought I would be so excited for another heart surgery but hey, it's all relative right! In the mean time we just wait till next week and pray for a good trip to the cath lab :)
I want to shout it from the rooftops and let everyone know how much their prayers are working and to please keep them coming!! God is faithful!
Oh and last week I remember posting how I couldn't survive without our moms but I forgot to mention something else, I forgot to mention this rock that holds me up each day, this Angel who keeps me going, this comedian that makes me laugh in the darkest moments, this provider who gives Madi and I everything we ever need or want, this man who treats me like a queen, this person who is my best friend and soul mate, what is this something I forgot to mention? Well, it's my hubby, Austin of course (sorry I forgot you hon). When I started dating him almost ten years ago I never knew we would go through something like this but God knew way back then we would be the perfect team to weather this storm. There's no way I could have made it through the past 16 months without him by my side :)
We continue to do well here at the hospital, the days actually go by pretty fast which is nice. We've had wonderful friends and family that continue to visit and keep us company. The four of us girls (Madi, mama, Gramsie and Grama) are becoming familiar faces to all the dr's and nurses which they are all very nice and friendly.
Hope you all are well, and enjoying the Christmas season :)
Love Tabi
Saturday, December 3, 2011
Bring It On!
Hey There,
Sorry I haven't updated "y'all" (gotta get used to this new term around here, hehehe) for awhile, there hasn't been much of a change since the last time I updated which is why I haven't posted for a few days! But like we always say, no news is good news so there ya go!
Honestly though, all is going well, Madi is doin fantastic and acting like her sassy little adorable self!! Your prayers are working wonders as always :). She is actually well enough to go home but because she had a rhythm problem a couple weeks ago it's safest she be monitored continuously to make sure that doesn't happen again. And it hasn't for quite a few days so Amen to that! In the mean time we're just waiting for a new medication to hopefully take effect (which can take at least 3 weeks) and then if it doesn't we'll try a larger dose or different medication. Slow and steady usually wins the race with heart babies so we'll take it for now!
While we're waiting for meds to kick in Madi has also been in the process of being evaluated for a heart transplant if needed :( If in fact none of the medications work the dr's are trying she may unfortunately need a heart transplant. Something I thought we'd never come to but the reality is her little heart has been drug through the ringer enough times that it may be irreversibly damaged from her last surgery in May. It was quite invasive as the surgeon had to cut through her left ventricle (the main pumping chamber for the entire body, something surgeons dont like to do) to close all her little holes in her heart and it's a little stiff. So long story short, we may be able to help everything through medications enough that her heart will be able to heal on its own but we may not, something that only God can decide, which He knows the best course for Her, that we discovered long ago! It's hard to swallow it all but we don't have any other choice at this point, we just put our game faces on and say to ourselves "bring it on" with God on our side we can tackle anything!! This is me at my best, please don't be fooled, this really sucks and is something I wish no parent would ever have to experience but if we didn't experience hard times would we ever truly know what good times are? I think not! For that I am thankful to God; He has made me stop and think how much of a blessing each day is and how much stronger my Faith needed to be and how much stronger it still can become!
On a lighter note, the grandmas are both here and helping us every second of the day! Wow, they are amazing! Gramsie (my mom), Grama (Lyn), and myself have been rotating each night at the hospital so we can each get 2 good nights of sleep and so Madi has all the comfort and love in the world 24/7! I really have no idea how we would survive without them! They have been cleaning at home, doing laundry, going to the store, and cooking meals to bring to the hospital every night so we don't have to eat out all the time, like I said amazing moms!
We truly are blessed each day; friends are visiting bringing gifts for Madi, food for us, and great company all around. People across the entire region continue to pray for our little M&M (miracle Madi) so we feel so much love and support from all of you! We can't say thank you enough! I will start trying to post more frequently to avoid such long darn posts! Sheesh! Until next time, take care!
Love Tabi
P.s. you'll be happy to know we have one of the most decorated rooms on the whole floor complete with baby Xmas tree, Xmas countdown calendar, wreaths, bows, glitter, Xmas music, the works! Now all we need is two big dogs and we would be right at home! Guess the picture will have to do for now :).
Sorry I haven't updated "y'all" (gotta get used to this new term around here, hehehe) for awhile, there hasn't been much of a change since the last time I updated which is why I haven't posted for a few days! But like we always say, no news is good news so there ya go!
Honestly though, all is going well, Madi is doin fantastic and acting like her sassy little adorable self!! Your prayers are working wonders as always :). She is actually well enough to go home but because she had a rhythm problem a couple weeks ago it's safest she be monitored continuously to make sure that doesn't happen again. And it hasn't for quite a few days so Amen to that! In the mean time we're just waiting for a new medication to hopefully take effect (which can take at least 3 weeks) and then if it doesn't we'll try a larger dose or different medication. Slow and steady usually wins the race with heart babies so we'll take it for now!
While we're waiting for meds to kick in Madi has also been in the process of being evaluated for a heart transplant if needed :( If in fact none of the medications work the dr's are trying she may unfortunately need a heart transplant. Something I thought we'd never come to but the reality is her little heart has been drug through the ringer enough times that it may be irreversibly damaged from her last surgery in May. It was quite invasive as the surgeon had to cut through her left ventricle (the main pumping chamber for the entire body, something surgeons dont like to do) to close all her little holes in her heart and it's a little stiff. So long story short, we may be able to help everything through medications enough that her heart will be able to heal on its own but we may not, something that only God can decide, which He knows the best course for Her, that we discovered long ago! It's hard to swallow it all but we don't have any other choice at this point, we just put our game faces on and say to ourselves "bring it on" with God on our side we can tackle anything!! This is me at my best, please don't be fooled, this really sucks and is something I wish no parent would ever have to experience but if we didn't experience hard times would we ever truly know what good times are? I think not! For that I am thankful to God; He has made me stop and think how much of a blessing each day is and how much stronger my Faith needed to be and how much stronger it still can become!
On a lighter note, the grandmas are both here and helping us every second of the day! Wow, they are amazing! Gramsie (my mom), Grama (Lyn), and myself have been rotating each night at the hospital so we can each get 2 good nights of sleep and so Madi has all the comfort and love in the world 24/7! I really have no idea how we would survive without them! They have been cleaning at home, doing laundry, going to the store, and cooking meals to bring to the hospital every night so we don't have to eat out all the time, like I said amazing moms!
We truly are blessed each day; friends are visiting bringing gifts for Madi, food for us, and great company all around. People across the entire region continue to pray for our little M&M (miracle Madi) so we feel so much love and support from all of you! We can't say thank you enough! I will start trying to post more frequently to avoid such long darn posts! Sheesh! Until next time, take care!
Love Tabi
P.s. you'll be happy to know we have one of the most decorated rooms on the whole floor complete with baby Xmas tree, Xmas countdown calendar, wreaths, bows, glitter, Xmas music, the works! Now all we need is two big dogs and we would be right at home! Guess the picture will have to do for now :).
Friday, November 25, 2011
A Good Day :)
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
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
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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