Hi Everyone,
I just wanted to start off by saying thank you again to all of you for your continued prayers, love and support as we delve deeper into this "Healing Hearts" journey! Austin and I feel so blessed to have so much support from all of our family, friends and church families (The Waters and Sunnyside Church.....to name a couple, I know there are countless others that I don't even know the names of that are praying for us and I thank you as well!) Each day Madison gets better and our faith grows stronger, in thanks to all of your prayers and devotion :)
I'll begin the M&M update by saying that we are "delving deeper" into our healing hearts journey because last week as we were smoothly sailing along the Berlin Heart road to recovery we noticed that Madi wasn't moving her left arm and leg much at all, just barely moving her fingers and toes. Of course as any true parent would be, we were in denial telling ourselves that she was just weak from lying on that side for weeks and from having lines, wires and tubes coming out of every crevice. Well, after getting a CT scan of her brain last Friday night one of our biggest fears was confirmed, starring us straight in the face: a dark gray shadow covering probably about one third of the right side of her brain, yes, a stroke is what we were seeing. Normal brain tissue appears as a light gray but a "stroke" or infarct, as it is technically called come to find out, appears as a darker shade of gray. I never thought that shades of gray could could mean so much; one shade, your body works perfect and another shade your body doesn't work so perfectly. Wondering what a mom thinks when she finds out her baby who has fought for her life for 17 months just had a stroke? Well this is what I thought:
What the heck? How did this happen? After all this, now she has to deal with heart problems and brain problems? This is so not fair to my Madi, so not fair! I want to scream and yell at someone for causing this!! Who caused this!!! About an hour later........... Oh but wait Tab, this is nobody's fault, there is no one to blame, no one to yell at, no yelling will make this better. Now what do we do? What's gonna happen next? This is God's will right? He got us this far, He won't let us down now. There has to be a reason for all of this! I wish I knew that reason? But I have to be strong for Madi and pray for more strength and faith because she is going to need my help to get through this. Put your game face on Tab, we have work to do!
Thats what went through my mind over and over for about the first day until I began to accept the fact that yes, Madi did have a stroke and no she wont have full use of the left side of her body when she wakes up! Now for the good news........the neurologists that spoke to us have said that babies brains are so resilient that most of the time they regain most of the function they lost because their brains just "rewire" so that they can regain function of their legs, arms etc. So that's very encouraging news. We wont really know the true extent of the damage until she wakes up and is off of her sedative medications but we have seen both the leg and arm move a couple times so we're holding on to that. We do know that she will need a lot of physical therapy and occupational therapy to help that "rewiring" process but we were doing it three days a week beforehand so now we'll just add a few more days on to that!
Stroke is a major risk factor of the Berlin heart because the body's blood is going through a piece of rubber tubing instead of its own tissue so even though doctors do their best to keep the blood perfectly thinned out so strokes don't occur, they still do unfortunately, it's just the nature of the beast. So, it's a set back we realize but its not our first and it won't be the last! Not only that, but the Lord placed that clot in such a way that even though she'll wake up with a weak left side, she'll wake up knowing who her mommy and daddy are and that's all that matters to us :) Amen!
Other than that she is doing really well and getting closer each day to coming off of the ventilator. Today she did her first set of "breathing trials" where she breathes on her own for a few hours and then goes back to a higher support setting. It's like training her for a marathon so when she extubates (hopefully later this week) she'll win that marathon. This little girl is so strong she continues to amaze everyone around her, including her doctors who say, "she's a fighter" and "she's such a trooper." I grew up knowing that dynamite came in small packages, I just didn't know it was this small :)
Each day is a gift that we should value, its not about tomorrow or the next day but today. I'm still working on this principle; it's hard to not think about tomorrow or the next day, or the day after that or the year after that, because after all, anyone who knows me knows that I have had my life planned out since about age 15 but for some reason it didn't go as I had planned! What? Who knew! What I do know is God has taught me a lot in the past 17 months about how it doesn't help to think so far ahead because we have no clue of how things are supposed to go, all he wants us to do is to trust Him and know that all will be okay if we just give in and let Him take over! And I'm just now starting to relinquish control to Him, why the heck did it take something like this for me to let go! Who knows, but I'm beginning to think it's done me a lot of good, guess I'll let Him take over after all :) Its just so amazing how things can change in the blink of an eye, you're going along easy peasy and everything changes. One day we were headed up to Madi's room waiting for the elevator and there was a husband and wife with suitcases waiting as well, I asked "do you have a baby upstairs too" the mom replied, "a big baby, a 14 year old boy." This young boy had just gotten life flighted here from San Antonio and recently found out that he too will need a heart transplant. Three weeks ago he was a normal 14 year old boy playing basketball and going about his life when his heart decided to fail him. He possibly got a virus that has damaged his heart so badly it cannot recover. This family is so devasted and cant believe how their lives have been turned upside down.. I hurt for them as I know that all the dreams and hopes you have for your child seem snatched away in an instant, but they aren't snatched, just put on hold momentarily :) We can all be blind sided by this or that but the main thing is to remember that this is only temporary, all will get better soon. The best time to see the stars is in the darkest of night!
Whew, sorry that ended up longer than I anticipated. Guess that's what happens when you have the 8:00 to 2:00 am shift in the ICU. That's the latest anyway! Again, thank you for all your prayers and I ask that you would just keep sending them up because they are being heard each and every day! I hope this post finds you all well and enjoying the new year :)
Love Tabi
Tuesday, January 31, 2012
Saturday, January 21, 2012
Patience....
Hey Guys,
Just a quick update on Miss Madi; she is doin well so far with her new "heart" or Berlin I should say :) It's been a slow going recovery but she's doin just fine. One side of her heart is still functioning on its own and the other side has been taken over by the Berlin. The recovery process is ultimately a waiting game to allow the side of her heart that is functioning (the right side) to recover from surgery and get used to its new partner the Berlin etc. In the mean time her little sternum is still open and she is intubated; this allows some extra room for the swollen heart after surgery and easier access if need be! Sounds bad, but it's really all covered up and she is completely on another planet with all the sedatives and pain meds she is on! Thank Goodness!! (I think I need a continuous drip of the same meds some days, just put me to sleep and wake me up when it's all over! Unfortunately, the nurses said no, lol). But all in all she has done quite well and the doctors are pleased with how she is doing so far.
Its a waiting game thats for sure! There's not a set plan of how things are to go, we just give her time to heal and go from there but I wish it were all faster! Each day I pray for patience; I ask God to help me realize that good things will come of all of this if I just wait patiently and trust in Him. I pray because I can't do anything else; I want to pick her up and hold her, I want to see her smile, I want to run my fingers through her curly hair, I want to feel her lay her head on my shoulder and most of all I want her to grab my nose and smile (this is a thing she does just for her mama for some reason and it melts my heart). But when I really stop and think about it I know God will grant us a lifetime of hugs and nose grabbing if only I continue to trust and be patient. And so I ask for it everyday, patience, strength and faith. It's an ongoing battle, but one that I will never give up :) I fight because Madi fights! She is so small but she is so mighty; some days when I just sit and admire her while she's fast asleep I cant believe the strength she has, not just physcially but spiritually. Nothing gets her down! She is eager but patient, she is calm but fiesty, she is quiet yet so opinionated and most of all she is weak but so strong! When I think of her and all that she is, I can't help but draw upon the strength of this little angel. God has given her power beyond belief, not only to win her own battle but to help each of us win our battles! And for that I am thankful and amazed all at the same time!
Last week we had thousands of people across the U.S. praying for our little girl, wow! Isn't that just awesome! We can never thank you all enough for all you have done for us, she is here because God heard your prayers and answered them fully! Please continue to pray for her as we have a long road ahead but we're getting closer and closer each day! Thank you again!
Love Tabi
Just a quick update on Miss Madi; she is doin well so far with her new "heart" or Berlin I should say :) It's been a slow going recovery but she's doin just fine. One side of her heart is still functioning on its own and the other side has been taken over by the Berlin. The recovery process is ultimately a waiting game to allow the side of her heart that is functioning (the right side) to recover from surgery and get used to its new partner the Berlin etc. In the mean time her little sternum is still open and she is intubated; this allows some extra room for the swollen heart after surgery and easier access if need be! Sounds bad, but it's really all covered up and she is completely on another planet with all the sedatives and pain meds she is on! Thank Goodness!! (I think I need a continuous drip of the same meds some days, just put me to sleep and wake me up when it's all over! Unfortunately, the nurses said no, lol). But all in all she has done quite well and the doctors are pleased with how she is doing so far.
Its a waiting game thats for sure! There's not a set plan of how things are to go, we just give her time to heal and go from there but I wish it were all faster! Each day I pray for patience; I ask God to help me realize that good things will come of all of this if I just wait patiently and trust in Him. I pray because I can't do anything else; I want to pick her up and hold her, I want to see her smile, I want to run my fingers through her curly hair, I want to feel her lay her head on my shoulder and most of all I want her to grab my nose and smile (this is a thing she does just for her mama for some reason and it melts my heart). But when I really stop and think about it I know God will grant us a lifetime of hugs and nose grabbing if only I continue to trust and be patient. And so I ask for it everyday, patience, strength and faith. It's an ongoing battle, but one that I will never give up :) I fight because Madi fights! She is so small but she is so mighty; some days when I just sit and admire her while she's fast asleep I cant believe the strength she has, not just physcially but spiritually. Nothing gets her down! She is eager but patient, she is calm but fiesty, she is quiet yet so opinionated and most of all she is weak but so strong! When I think of her and all that she is, I can't help but draw upon the strength of this little angel. God has given her power beyond belief, not only to win her own battle but to help each of us win our battles! And for that I am thankful and amazed all at the same time!
Last week we had thousands of people across the U.S. praying for our little girl, wow! Isn't that just awesome! We can never thank you all enough for all you have done for us, she is here because God heard your prayers and answered them fully! Please continue to pray for her as we have a long road ahead but we're getting closer and closer each day! Thank you again!
Love Tabi
Monday, January 16, 2012
Overcoming the World
" I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33
Yesterday was one of the biggest days we had yet to overcome, of all Madison has been through, yesterday was the worst of it thus far. But I am given comfort in the scripture above knowing that God has overcome the world and we will overcome because of Him!
The day started out good yesterday, the doctors even started the morning off by saying she was getting a lot better which meant we could come off of some of her sedative medications to start waking her up in hope to get her breathing tube out! Great news! Unfortunately, she did not respond well to being taken off of some of the sedatives and in true Madi fashion she came up swinging, litteraly! She was kicking and swinging her arms, ready to put up a fight......she is so darn fiesty! Too much for her own good sometimes! Long story short, the agitation made her go into cardiac arrest in which she was given CPR for 20 minutes after which her heart came back and started beating on its own again with some medication etc. After the incident she was rushed to the OR where she was put on a temporary left ventricular assist device (LVAD) that takes over the function of the left ventricle (the underlying problem of everything since the day she was born come to find out). She did as good as they could have expected in the OR and was able to tolerate everything they did with no problems! She is currently stable and hooked up to a lot of machines and meds to keep her that way but the good Lord has allowed us to develop all these technologies so my baby still has a chance at life!
It was evident yesterday that God's hand was everywhere; we felt His prescence and prayed that He would be with her through the events and He was! She made it through something that not many would and for that we thank God; He was working through an amazing team of doctors, nurses and surgeons who saved her life otherwise she would not be here today. Its not the first time and it will not be the last but its truely a miracle she is still here today and we didn't lose her yesterday.
Because she recieved CPR for 20 minutes there is a chance that she could have suffered neurological damage so we need prayers that has not been the case. Because doctors where right there and didn't allow her to go without oxygen she should be fine but there is still a chance. The good news is she has not had any seizures or nuerological events within the past 24 hours since the arrest, so that is really good news. God hears what we ask for, so please continue to help us through prayer.
As I sit here next to Madi in the corner of her ICU room (the only place I can fit because there are so many machines) I am truely amazed at what good God has created to overcome the evil in this world. He has given us tools to keep all these little children alive because each one of them have so much good to give once they are better, they too will glorify His name. We will always wonder why our baby? Why us? What did we do to make this happen, but it is not us, it is not God, it is just a manifestation of evil and we will overcome!
So whats the plan now you're probably wondering? Well, the LVAD she is on now is not one that she can be on for long term while she waits for a new heart so on Wednesday or Thursday (after she has passed her nuerological evaluations) she will go back to the OR where she will get a "Berlin heart" (google it if you wanna know, it's a new device that is going to save her life). The Berlin will essentially allow her to live a near normal life until her new heart comes. She will be able to be up and play, eat, get stronger etc. so when her new heart comes she's ready for it!
I know you all have been praying like warriors for Madi and I ask that you continue! She is here today because God has heard you! We can never thank you enough for all that you have done and continue to do!
Love Tabi
Yesterday was one of the biggest days we had yet to overcome, of all Madison has been through, yesterday was the worst of it thus far. But I am given comfort in the scripture above knowing that God has overcome the world and we will overcome because of Him!
The day started out good yesterday, the doctors even started the morning off by saying she was getting a lot better which meant we could come off of some of her sedative medications to start waking her up in hope to get her breathing tube out! Great news! Unfortunately, she did not respond well to being taken off of some of the sedatives and in true Madi fashion she came up swinging, litteraly! She was kicking and swinging her arms, ready to put up a fight......she is so darn fiesty! Too much for her own good sometimes! Long story short, the agitation made her go into cardiac arrest in which she was given CPR for 20 minutes after which her heart came back and started beating on its own again with some medication etc. After the incident she was rushed to the OR where she was put on a temporary left ventricular assist device (LVAD) that takes over the function of the left ventricle (the underlying problem of everything since the day she was born come to find out). She did as good as they could have expected in the OR and was able to tolerate everything they did with no problems! She is currently stable and hooked up to a lot of machines and meds to keep her that way but the good Lord has allowed us to develop all these technologies so my baby still has a chance at life!
It was evident yesterday that God's hand was everywhere; we felt His prescence and prayed that He would be with her through the events and He was! She made it through something that not many would and for that we thank God; He was working through an amazing team of doctors, nurses and surgeons who saved her life otherwise she would not be here today. Its not the first time and it will not be the last but its truely a miracle she is still here today and we didn't lose her yesterday.
Because she recieved CPR for 20 minutes there is a chance that she could have suffered neurological damage so we need prayers that has not been the case. Because doctors where right there and didn't allow her to go without oxygen she should be fine but there is still a chance. The good news is she has not had any seizures or nuerological events within the past 24 hours since the arrest, so that is really good news. God hears what we ask for, so please continue to help us through prayer.
As I sit here next to Madi in the corner of her ICU room (the only place I can fit because there are so many machines) I am truely amazed at what good God has created to overcome the evil in this world. He has given us tools to keep all these little children alive because each one of them have so much good to give once they are better, they too will glorify His name. We will always wonder why our baby? Why us? What did we do to make this happen, but it is not us, it is not God, it is just a manifestation of evil and we will overcome!
So whats the plan now you're probably wondering? Well, the LVAD she is on now is not one that she can be on for long term while she waits for a new heart so on Wednesday or Thursday (after she has passed her nuerological evaluations) she will go back to the OR where she will get a "Berlin heart" (google it if you wanna know, it's a new device that is going to save her life). The Berlin will essentially allow her to live a near normal life until her new heart comes. She will be able to be up and play, eat, get stronger etc. so when her new heart comes she's ready for it!
I know you all have been praying like warriors for Madi and I ask that you continue! She is here today because God has heard you! We can never thank you enough for all that you have done and continue to do!
Love Tabi
Friday, January 6, 2012
Soldiers
Hey All!
Just a quick update to let you all now that we are out of ICU!!!! Woohoo! We got moved to the cardiac floor Wednesday :). It's been so great because we all get tons more sleep! No more middle of the night shift changes for grandmas and daddy. And no more 14 hour days in the ICU for mommy! And best of all, less stress on our little angel so she can sleep easier!
For now our plan is to stay put for a few weeks and then Madi will have a cardiac cath to assess her lung pressures and see if they have improved after being on her new medication; depending on the results she will either be listed for transplant (this is what we're hoping) or the dr's may have to take a more invasive approach to getting her lungs in better shape. The more invasive approach may mean a "Berlin Heart" which is an artificial heart that would be used in place of her own to help her lungs heal since her little heart is what has been and continues to damage her little lungs (its a complicated indirect response to her congenital heart disease). So, it sounds scary but it's something that babies with complex heart disease deal with! At the end of the day, God is with her and all of us and He will decide what is best for her!
With that, I can't help but feel like we're at war sometimes; we're all soldiers and fighting to win this battle. God has armed us with His strength because there is no other way we would each still be standing. We fight because we know we will win! However, sometimes I think I go too far and try to fight too hard like I'm doing more than God would intend for me to? Maybe I should leave it more to Him and not fight so much? But then a great friend told me just days ago "we're in no way strong enough to change God's plan. It doesn't mater what we do, His will will be done". Thanks for that! I needed to hear that to know that as Madi's mom I can do and say all I want but God will have His way, thank goodness because I didn't want to be screwing things up! ha!
Madi is doin well, she is super thirsty because she is on so many diruetics (helps control the bad side effects of her new med) so she tries to convince anyone and everyone to get her a drink of water but all she gets is 6 ounces of water and ice chips :( so she's pretty absorbed with wanting drinks most of the day but when she's not doing that we play and watch Disney or Nickelodeon :)
Our Mom's are still here with us and we are so thankful for them! I know that I would have collapsed of exhaustion and collapsed wearing dirty underwear for that matter if it wasn't for them :) These two women are truly amazing and devoted to our family. They have sacrificed all of themselves for Madi and for us! When I said "we" are in a war it's the grandmas too! We make a good army though, that's for sure. So if there was a "Grandma Hall of Fame" these two would be in it that's for sure! But don't worry, I reminded them both that they are old and need more rest than me and Austin, hehehe!
Anyway, that's the latest! Hope you all are well and as always thank you for your continued thoughts and prayers!!
Love Tabi
Just a quick update to let you all now that we are out of ICU!!!! Woohoo! We got moved to the cardiac floor Wednesday :). It's been so great because we all get tons more sleep! No more middle of the night shift changes for grandmas and daddy. And no more 14 hour days in the ICU for mommy! And best of all, less stress on our little angel so she can sleep easier!
For now our plan is to stay put for a few weeks and then Madi will have a cardiac cath to assess her lung pressures and see if they have improved after being on her new medication; depending on the results she will either be listed for transplant (this is what we're hoping) or the dr's may have to take a more invasive approach to getting her lungs in better shape. The more invasive approach may mean a "Berlin Heart" which is an artificial heart that would be used in place of her own to help her lungs heal since her little heart is what has been and continues to damage her little lungs (its a complicated indirect response to her congenital heart disease). So, it sounds scary but it's something that babies with complex heart disease deal with! At the end of the day, God is with her and all of us and He will decide what is best for her!
With that, I can't help but feel like we're at war sometimes; we're all soldiers and fighting to win this battle. God has armed us with His strength because there is no other way we would each still be standing. We fight because we know we will win! However, sometimes I think I go too far and try to fight too hard like I'm doing more than God would intend for me to? Maybe I should leave it more to Him and not fight so much? But then a great friend told me just days ago "we're in no way strong enough to change God's plan. It doesn't mater what we do, His will will be done". Thanks for that! I needed to hear that to know that as Madi's mom I can do and say all I want but God will have His way, thank goodness because I didn't want to be screwing things up! ha!
Madi is doin well, she is super thirsty because she is on so many diruetics (helps control the bad side effects of her new med) so she tries to convince anyone and everyone to get her a drink of water but all she gets is 6 ounces of water and ice chips :( so she's pretty absorbed with wanting drinks most of the day but when she's not doing that we play and watch Disney or Nickelodeon :)
Our Mom's are still here with us and we are so thankful for them! I know that I would have collapsed of exhaustion and collapsed wearing dirty underwear for that matter if it wasn't for them :) These two women are truly amazing and devoted to our family. They have sacrificed all of themselves for Madi and for us! When I said "we" are in a war it's the grandmas too! We make a good army though, that's for sure. So if there was a "Grandma Hall of Fame" these two would be in it that's for sure! But don't worry, I reminded them both that they are old and need more rest than me and Austin, hehehe!
Anyway, that's the latest! Hope you all are well and as always thank you for your continued thoughts and prayers!!
Love Tabi
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