Learning

Hi Everyone,

I'm happy to report we are out of ICU and have been for 3 weeks now!! Woo hoo! It's been so nice to be out of there; no constant beeping, noise and lights but some peace and quiet where we can rest and just hang out together on the couch and watch 101 Dalmations, Madi's all time favorite movie by the way. No big surprise though, she's obbssessed with dogs, mostly big dogs, can't imagine why that would be?? Lol, yes we do Face time with her brothers Huck and Kodiak at the house when we can so the three siblings can see each other :). Madi tells them "hi" when she sees them, so cute!

Anyway, all is going very well here, we're maintaining and just waiting for her gift to arrive! Really trying not to think about it and just keep going on each day because if I think about it I wonder, when will it come? Why hasn't it come? What a terrible day that it will be for the family who donates but a great day for us? That in itself is difficult to think about! So, when I start to go down that road, which I clearly have, I just try to quickly get off it because it doesnt get me anywhere but anxious and upset "So dont worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today" (Matthew 6:34). Isn't that the truth! Today has enough to deal with to worry about tomorrow. Duh, so just worry about today, no big deal! I wish it was that easy but it's not supposed to be easy I guess; learning to use our faith in God instead of our own strength to get us through each day (each week, each month, each year etc.). Again, something I admit I am really crappy at but I'm getting better each day I think. I've always been one to think that nothing is done right unless I do it myself, but what if what you want done is your baby to get a new heart? Obviously I can't do that myself so it becomes pretty clear that not only can I not accomplish that task on my own but really who was I kidding prior to Madi? I can't do anything by myself, I have to let go and let God. Again, I really wish It didn't take my baby needing a heart transplant for me to learn this! Whoever knew and didn't tell me where were you! I'm sure I was told I just never listened. Funny how that happens!

This whole experience has made me a completely different version of myself, I don't know if it's a better or worse version, just different. I told Austin once, I feel like one of those soldiers you here about coming home from war where they struggle to live a normal life. We havent been to actual war but we have been in a battle to save our daughters life since the day she was born. It's something that forever changes you and makes you think about life in a completely different way. We, like soldiers, have seen and done things that no parent should ever see or do but yet I think it has made us more appreciative of the life we are currently living because we know it can be a lot worse and Madi can be a lot worse. I just hope that never changes and we will continue to see the good and not the bad in each situation we are dealt. I will say that God gave me the best partner for this battle because Austin has a special gift for seeing the light even in the darkest of times. It doesnt mater what it is but he has a way of making things seem not so bad, just another gift God handed me; this gift just happened to be walking down the hall at RHS about ten years ago and caught my eye. I did have to stalk him a little in the end and ask him on a date myself but hey my "nothing is done right unless I do it myself" attitude worked out for at least one thing, lol :)

Over all we are hanging in there, making the best of each day and just glad Madi is doing so good! Our main focuse right now is Physical and occupational therapy, which are going well. We're just trying to build up the strength in Madi's legs that she lost after being sick for so long and having a stroke. Her left leg is really functioning well, almost as good as her right that wasn't affected by her stroke. Her left arm is a little more of a struggle but we knew it would be from the start. It has limited function but we're working on it and if I had to choose between the arm or the leg I would hands down choose the arm because we need the leg for walking, which the doctors say they have no doubts she will do with time :)

Sorry for such a long post, guess I had a lot to share! Thank you as always for all of your thoughts, prayers, gifts, phone calls, texts, meals, etc. that you all have sent our way! We couldn't survive without you!!! I've attached a few recent pics of Madi as well!

Love Tabi

Back to Life!

Ok my apologies, I know it's been forever since I last updated but remember when I said no news is good news, well in this case it is! Madi is doin great and continues to make great strides in her miraculous recovery! We are still in the ICU mainly bc she has been so tumultuous to manage (and bc everyone here loves her to pieces) but the docs just want to make sure she is stable for two full weeks before they send her to the step down unit. It would be a great change for all of us here on "team madi" but when she is ready she will go down!

Last time I wrote I think she was still on Cpap and I hadn't gotten to hold her yet. Shortly after that she went to a high flow nasal cannula and I was able to hold her for the first time in 53 days! Those 53 days were the hardest of my life; Although I put on a good front and tried my best to act happy every second Madi had her beautiful eyes locked on mine I was empty inside. A mom that can't take care of her child is a mom that is dying inside; a mom who so desperately and instinctively wants to calm and comfort her baby but can't. It's was pure torture. But I can tell you that the moment she layed in my arms after all that time and just fell asleep bc she was so comfortable, every ounce of life I ever had came flooding back to me! I cried that day, tears of joy. During those 53 days there were some when I wasn't sure if I would ever get a chance to hold her again but God brought us back together and we both have life again :)

Its so great to pick her up when she cries, to comfort her, to pat her bum, to bounce her in my lap, to feel all 14.5 pounds of her go completely limp bc she has fallen asleep on my shoulder. Oh the joys of being a mommy again :). Below I've attached a few pictures of her here and there and as you can see she is doin so great! She's a little star around here and has visitors each and every day just ooing and aweing over how great she looks and how adorable she is! She has made great progress in physical therapy and occupational therapy as well; she can walk, she can move her left arm, has recently starting trying to grasp with her left hand and started saying "hi" again too! Mind you, these are all things that were damaged by the stroke that she had but her little brain has already figured out how to use other uninjured parts to rebuild what she lost, it's just amazing! She has the tiniest little pink brace for her left leg when she walks bc the muscles are somewhat weak due to the stroke but it only took 24 hrs to get her used to it and now she just walks like it's not there. Still a lot of work and rehab to do but we'll get there eventually! In the mean time I'm doing my best to become a makeshift physical therapist, occupational therapist and speech therapist by asking lots of questions and learning all I can to help as she does a lot better when it's just her and I than when there are people around she doesn't know.

Still waiting patiently for her gift to arrive but trying not to think about it and just praying God will bring it to her when the time is right. Another thing to add to our list of miracles that I thought you guys would like to know; Madi gets her blood drawn every couple weeks to test and see how sensitive she is to other tissues (ie how sensitive she would be to a new organ, lower is better bc you don't want to be so sensitive that you'll reject everything). Anyway, before this whole Berlin thing her sensitivity was 28 which means she is sensitive to 28 percent of the population and could accept an organ from 72 percent of the population. Normal is like zero to ten but bc she's had so many surgeries her body becomes more "on edge" and sort of in fight mode compared to the rest of us so the sensitivity tends to go up the more surgeries, blood transfusions (she's had countless) etc. a person has. Well, they tested hers again last week and they had gone from 28 to zero!!!!!!! Wow!!! Isnt that awesome! I mean God is really planning this all out to give her the best possible chance at life! This means she can accept any organ that is a match for her :). Awesome!

That's about it for now, I hope you all are well and enjoying spring time! Keep up the prayers bc try are working wonders for us! Thank you doesn't seem like enough!


Love, Tabi

For the Greater Good .....

"And we know that God causes everything to work together for the good of those who love God and are called according for His purpose for them." Romans 8:28


Hi Guys,

It's been awhile since I last updated the blog (as usual,sorry) but a lot has happened since last time! A lot of GOOD things that is! Little M&M is finally extubated and doin great! She is currently on CPAP but should be switching to a high flow nasal cannula today (it's closer to a normal oxygen cannula just a little higher flow). Anyway, it took us seven weeks to get here but none of that maters, all that maters is that we made it! This is huge step for her :). God has given her so much strength to overcome everything she has endured, I am just amazed!

We've come a long way, it's just crazy what Madi has been through in the last seven weeks, well 19 months if you think about it. My last post we were about to extubate her but she actually "coded" again a few days later. This time it wasn't as bad as before because she had the Berlin giving her cardiac output even though the right side of heart was freaking out somewhat. The day before this event she was weaned from one of the narcotics she had been on for a month and this caused her to be tachycardic all day with a heart rate in the 150's (classic drug withdrawal). This isn't good for a normal heart to do all day long so a heart in bad shape really doesnt tolerate it and it just got tired and decided to slow way down. So, after a couple doses of epinephrine and an entire night of low and high heart rates it finally decided it felt better and started beating more normally by the morning. She would have been in much worse shape if she wouldnt have had the Berlin helping her to maintain a good blood pressure and stable pulse through all that! The next few days after that were followed with kidney and liver dysfunction due to the stress of the event most likely as well as another treatment for pneumonia! I know, lovely huh, but just remember she's much better now and all that stuff has resolved......thank you Lord :).

After all that it was time to tackle extubation again and she finally did it! I think everyone was worried that she wouldn't be strong enough and they'd have to reintubate but she did great! of course :). Then on Saturday she had a huge blood clot in her Berlin so the doctors had to take her to the OR and change her pump out, otherwise the clot could have dislodged and caused another stroke, ugh! But God protected her thought that as well. It only took them 48 seconds (which is their record time, gotta do it fast bc there's absolutely zero blood flow to her body during the time they change it out). she came back from OR with a shiny new pump with no clots in it! We've finally gotten over this huge hump and we're in a much safer place now! Whew!

Anyway, I started out with Romans 8:28 because I read it the other day and it got me thinking about how our little baby girl has brought so many people closer to God. And I'm only talking about those of you who tell me how much of an impact she has had on you, that doesn't even include everyone else who hears about Madi and prays for her. I don't know if I'll ever understand why God chose her or why He chose our family but if anything I know that I find peace in the fact that Madi is God at His finest; her "broken heart" has healed so many and brought them closer to Him, I mean isn't that the ultimate goal,to bring as many to the Lord as we can? If that's the case, Madi is certainly in the lead however physically behind she may appear. Although this whole thing really sucks and I'm totally over it and just want to take my baby home I draw upon this from time to time to help remind me what we're really doing here, working together for the good of those who love God :)

Oh and last thing, she is at the top of the transplant list! If any offers come in within a 500 mile radius she's the one! Last week two offers came in and she wasn't at the top of the list but now she is. Praying for a gift of life :). Thank you again for your continued thoughts and prayers!!

Love, Tabi

Two Steps Forward, One Step Back

"I can do all things through Christ who strengthens me." Philippians 4:13

This is my new favorite verse, it's short which I love because I can remember it, and it says everything I need to get through each day! I was reminded of it this week in one of my daily devotions and it came just at the right time; I don't need to be scared because I know that God will give our family strength to win this battle. Even if I have to recite this to myself three times a day everyday it helps me to know and remember, God is right beside us!

I start with this verse because the last few weeks have been "two steps forward one step back" type of weeks. Madi is still intubated and every time we think she's about to get the tube out, something comes up that sets her back :(. It's been frustrating to say the least but it's so helpful to remind myself how present God is in our lives. Literally everyday something happens that lets me know He's here. Its so awesome :). That said, Madi is doing very well, she's come a long way over the past six weeks. She was so sick you guys, we never really knew how sick she was. Even way back at her first birthday she was sick, we just didn't know because she couldn't tell us and she compensated so well. That's why it's taking her longer to get better this time around, she really needed her Berlin heart and God intervened before it was too late. Her lungs were sick, her heart was very sick and she just kept on goin till she couldn't anymore, but now that she has the help she needs all of that is slowly getting better, it just takes time, soon I'll get to scoop all 14 pounds of that little squirt up in my arms, I can't wait!

I can't even tell you how sassy she is! It's so funny! Everyone has noticed how big her personality is, and how strong this little peanut is! She actually sits up in bed on her own with a breathing tube down her throat! Her physical therapist said she has never seen a kid do this before and be so content and playful while being intubated. She's so strong it's just jaw dropping actually. The other day we filled up a bin of water and she played in the bubbles like a crazy girl, her surgeon even came by to try and play with her and she glared at him like "excuse me who are you and why are you touching my bubbles?". Lol, it was pretty funny!

Anyway, her lungs are a little congested with extra fluid so we've taken away some meds, added some others and that should help, once they're dried out then she can get extubated, hopefully soon!! Once she's extubated she can get up and movin, which will be so much better for her stroke rehabilitation. We've seen some really nice movements from her left arm and leg which is so awesome! We have to hold down her right arm and leg to make her move the left but if she really wants to she can, which is very reassuring!

It seems so normal to be talking about all this stuff because it's just our everyday life but on the rare occasions when I do actually leave the hospital I realize this is so not normal! Our life consists of ventilator settings, oxygen saturations, physical therapy, echo's, chest X-rays, fluid balance.....the list goes on and on, but out there the world is still going on, everyone is living their lives and I am reminded how real this all is; yes my baby is really sick and yes she is fighting for her life each day, she's waiting for a heart transplant!!! What?? Sometimes, it seems so normal I forget how serious this all is! I was reminded last week when a 7 year old boy lost his battle with congenital heart disease. He had been fighting for so long and the Lord called him home. I had met his mom and although I don't have a clue what it feels like to lose a child I do know that it scared me, I do know that Madison and this little boy have a lot more in common than any other normal babies out there, I do know next to him Madison has been here the longest. This all just makes it too real, that yes children do lose their battle with CHD and families have to go on without their precious babies, it's just too close for comfort. It made me stop and realize how easily that could be us. It made me realize that although I get frustrated with "two steps forward and one step back" at least we're moving forward, even though I cant hold Madi now, at least I will get to soon. And most of all, I dont know what tomorrow will bring so I'd better darn well live for today! I find comfort knowing that this boy who was our ICU neighbor at one time is no longer in pain, he is no longer short of breath, no longer too tired to even hold his head up, now he is running, playing and enjoying his time in Heaven until his family arrives. Our future is uncertain, nothing is a guarantee, it is my job as Madison's mom to live for each day and remember that this is only our temporary home! (but I'm selfish sometimes and want her here with me forever.....I'm working on it :)

Hope this update finds you all well! As always, thank you for your thoughts, prayers and love! We couldn't do it without you!

Love Tabi

Shades of Gray

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

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

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