Home sweet home!

Hey Guys!

Oh my goodness I can't believe the last time I posted was right after Madi got her new heart, jeez I've really been slacking!! Sorry! Im sure most all of you already knew we were home via FB or word of mouth etc. but yes after 220 days we finally got to bring our baby girl home!! It was a very similar feeling to when we brought her home when she was first born, just so exciting and something we'd been waiting and waiting for! She hadn't even been to our new house yet so it was even that much more special. After all she had overcome, it was just a great feeling to walk through that door with her in my arms :)

That was two weeks ago already and so far so good, or so great, I should say! I cannot believe how much Madi has blossomed, it is truly amazing. I never really knew how much her heart failure had been affecting her until I saw her with a healthy heart. Up until now, Austin and I could hardly squeeze smiles out of her and now she's all smiles all the time! She has gone from taking two to three naps a day to only one and if she's not sleeping she's wanting to go here there and everywhere! The only problem is she hasn't yet figured out how to do that on her own so mom is getting plenty of exercise :)! She slows down from time to time to watch the newest episodes of Mickey Mouse Clubhouse but that's about it, otherwise she's busy trying to figure out how to get movin:). Since we've been home she's started rolling, cruising on the furniture, turning on her bum, saying Mama (not just Dada), scribbling with a pen, working on her sounds etc. etc. she truly has been given a new life. She has progressed more quickly than I have ever seen, isn't that just awesome! She's got a lot of work to do with physical, occupational and speech therapy but now that she's got a strong heart, all of the milestones will be a lot easier. She would probably be crawling already but she's still tryin to figure out what to do with "Leftie". This is her left arm's name bc it kinda does its own thing and doesn't like to participate so we've given Him a name:) It's a he bc he never listens and you have to tell him over and over what to do!! Hehe :) That said, her stroke affected side is doing better and better and getting stronger each day! She'll figure out how to make it all work for her just might not be as easy as it would be otherwise!

We had a clinic appointment a week ago and everything looked good on her echo, heart was functioning very good! On Monday she will go to the cath lab for her second biopsy which is where they actually take a tissue sample of her heart and then send it to the lab to check for rejection. The scale of rejection is 0, 1R, 2R and 3R. A month ago her rejection was 1R which is nothing the doctors worry too much about or even treat in addition to what she already takes twice a day to prevent rejection. If the biopsy is a 2R or 3R she would be admitted to the hospital for IV med treatment to help get her out of the 2 or 3 and back to 1 or 0. This is something we will monitor for the rest of her life, just not as frequently the further out she gets. They'll also be checking her lung pressures as she still has what is called pulmonary hypertension that is a result of her old heart. It's basically scar tissue in her lungs that we have to treat with meds and oxygen and just wait for it to get better over time. If she was an adult we could forget it, they wouldn't get better but bc she's so young and resilient the lungs should heal. I'm really dreading the cath lab on Monday though; we have to be there at 6:30 am which means leaving our house at 5:30, sending Madi to cath about 7:30, she'll be out at prolly 10:30, recovery for about 2 or 3 hours and then just wait till about 5:00 pm for the results! Whew, they are long days! At least we don't have to drive from Rock Springs to Salt Lake and back like we used to! That was even worse! Ugh. It also brings back way too many emotions going to the hospital I hate it! I wish I was stronger and could overcome them but I haven't yet, I'm praying about that one! A lot! I think with time and God's help it'll get better.

Anyways, that's what's goin on lately around here! I hope you all had a great 4th of July and enjoyed time with your family and friends. We enjoyed celebrating our first holiday outside of the hospital since Halloween! We're praying it's a trend for a long time to come :). I wanted to quickly thank all of you for the cards, gifts, thoughtful letters, messages, food etc. that you have sent! If I haven't sent you a thank you card in the mail please forgive me I appreciate each and every thing you all have done and it brightens my day! I have been blessed with amazing family and friends! Please pray for Madi's donor family as she would not be here if it wasnt for their precious gift and for Madi that her cath lab on Monday will go well!!

Love,
Tabi

P.s. sign up to be an organ donor :)!!

The Greatest Gift

"This happened so the power of God could be seen in him". John 9:3

Hi Guys,

I can't believe I'm actually writing this post right now!!! The post I've waiting to write for seven long months to tell you all about Madi's new angel heart!!! Its still so surreal, I can't believe how fast things have gone from "we're gonna be here forever, and there is no end in sight" to "we've gotten a new perfect heart and we'll be going home sooner than we know it!" It's just an amazing, scared, sad and awesome feeling all at the same time if you can imagine. I can't even describe the feeling you get when you find out someone else has chosen to give your child life even though their own child's was so severely cut short; this is the biggest act of selflessness that I can truly think of and for that I feel that thank you is not enough. I don't know anything about our donor family other than they are amazing people who have allowed our little girl a a new lease on life. No longer will she have to struggle to catch her breath every hour of the day, no longer will her stomach constantly feel upset because it wasn't getting enough blood flow, no longer will she feel like she can't stand up and play with her toys because she is too tired, no longer will she feel hot and sweaty all the time because her poor body is always working over time and no longer will she only get ice chips when she is thirsty because her body cant handle extra fluid! Our baby girl will get to experience what life is meant to be not what it has had to be the past 22 months. I hope someday our donor family will come to know just how great this gift is, just how deeply grateful we are and how much this has changed our family's life for the better. I do not know what it feels like to lose a child and I hope I never do, but I do know my baby girl has knocked on death's door one too many times and for that I realize how precious life is
and how huge this gift of life is to us!

I want to thank you all for your outpouring of love, support, prayers and undying faith through all this. I couldn't believe my Facebook page on Tuesday when I told you all the news, it was just awesome to see how many of you have been praying for her!! It brought tears to my eyes every time I logged on just to see how many of you care for her! And thats just Facebook, not the countless others out there who I know are praying for Madi but I don't get to directly communicate with. It's so wonderful and I can't thank you all enough! Your prayers are what have brought us so far and we will continue to need them as we embark on a whole new journey.

Madi has done amazingly well through the first 24 hrs with her new angel heart; the doctors warned us before surgery that the heart may struggle against her high lung pressure (consequence of her native heart disease) and she would probably come out on a temporary assist device for the new heart while it got used to her body. Well, her angel heart didn't need any assist device and was beating so strong against her high lung pressures that her surgeon couldn't even explain it!!! This little heart was hand picked for our little M&M no doubt about it. Her surgeon said he had never seen a transplanted heart do so well against such high lung pressures! Isnt that just awesome! God's handy work was yet again all over this one :). "This happened so the power of God could be seen in him" John 9:3.

She has done great so far but we still have a long recovery ahead of us. The first 3 months to a year are the most critical months for rejection so once we do go home we will have numerous trips to and from the hospital to make sure her anti rejection meds are working as they should. Most transplant recipients deal with rejection throughout their life and take medications every day to keep their body from rejecting the organ. She will have ups and downs, good days and bad days and best case scenario her heart will last until she is in her late teens and she will have to get another transplant or an artificial heart if they have such a thing by then. But it is all a million times better than what she has been dealing with since the day she was born and we will take each day, month and year as they come with open and grateful arms :)

In the mean time, I can't believe that we will get to go home sometime soon!!! Austin and I bought our new house in November but as a family we have never even lived in it! It doesn't even feel like "home" yet but once Madi is there it will shed a whole new light on things, I can't wait! It might be a month or so until she is outa here but hey, at least there is a light at the end of the tunnel:) Once we're home we won't be able to have many visitors or take her anywhere for that mater as she will be so immunosuppressed that it is just too risky to expose her to many germs, so if you don't get to physically see her for quite some time that is why! Luckily, I am a huge germ freak and don't mind it so hopefully that will help (or hurt.....I haven't decided yet, lol) but she's pretty much been on house arrest a large majority of her life so it won't be anything new to us. Just overjoyed at the thought of sleeping under one roof with my hubby, baby girl and two big dogs :)

Well, that's about all I have for now! I can't thank you all enough for all the prayers and please continue to pray for Madi as we are not even out of a very critical period right now. She has done great so far and will only continue to do so through God's watchful eye. I hope you all are enjoying the start to your summer!! Oh and.......if you aren't yet an organ donor please please sign up:)!!

Love Tabi

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