The whole story

I have been encouraged by several people now to tell Kasi's story from beginning to the end.  So with that, I have a lot of typing to do :-)

April 12, 1996 at 7:58 pm during the first thunderstorm of the spring Ron and I were blessed with the birth of our little girl, Kasaundra Kay DeRoo.  She looked beautiful and had 10 fingers and 10 toes, the first thing you look at when you have a new little one in your lives.  She seemed so perfect with her jet black hair sticking up all over the place.  Her arrival was very normal although she was 2 weeks over due she was only 6 lbs 12 oz.  We were looking forward to being discharged when we were told that she might be too jaundice to go home.  I was shocked because that would mean she was not "perfect" and I had a little post pardon crying going on, and the combination of the two didn't work very well together.  In other words, I lost it!  After poking her little foot they decided to let us go home as long as we came back in after 48 hours.  The weather was supposed to be sunny, and if any of you have had kids that are a little yellow you too know that the sun light helps.  So, we put her in her bassinet by the window with only a diaper on and prayed that she would be okay.  This was such a hard thing on me, who knew what was yet to come. 
After a couple of days my mom and I took Kasi in to get checked and once again the levels didn't look ideal, but they were okay.  We were to come back in one more time and get them checked.  How much could I take of this!  I remember at that time not really praying over her, but more asking God what is going on?  This should be so easy.  A few days later we went in one last time and she got another poke.  (by the way I didn't go in the room with her because of my post birth bawling I couldn't handle it. Yep, I cried in the waiting room when I heard her cry.  I laugh at that now!)  In fact the last time an older guy was in the waiting room and sat next to me and said "don't worry I understand, my daughter just had a baby too".  How funny now that I look back at that.  At this blood test she was cleared and we were free to live "normally".  So we thought.
At about two weeks of age I started to notice things about Kasi that I didn't feel comfortable about.  She was spitting up, actually throwing up, all of the time.  I took her into the doctor I was seeing at the time and she said it could just be reflux so we tried cereal in her bottle, but this wasn't really helping.  I was in the office about two days later because I notice that her eyes were swollen when she woke up.  Once again, I went home and thought all was fine and we made an appointment with an eye doctor to see if there was something in her tear ducs from birth.  We waited another couple of weeks when we had a follow up appointment for her "reflux" and the doctors were starting to say that they didn't think she has reflux either.  I was lost at this point because she was throwing up a lot and was kind of fussy.  She seemed to be sweating a lot, but no one really said much to us about that.  Kasi then woke up and one of her arms was swollen.  I took her back into the office and I was told that her jammies were too tight.  At this point she was about 3 weeks old and I thought I was the one with the problem.  Her eyes were fine, her jammies too tight, and she really must be spitting up and not throwing up.  I was nervous to even call when I would notice something so when I finally felt I had to call it was because Kasi was throwing up all night and we could not lay her down at all.  It was so bad that I called my mom and dad and asked for them to bring over their recliner so I could rock her in that all night.  There we were all night long and we went through 48 spit up diapers.  Yep 48!! She had thrown up so much by then that her esophagus was bleeding. It was time to go in. 
On Friday, May 25, Ron and my dad headed up north to the cottage and my mom and I took little Kasi back into the doctor.  What we were told this time is that Kasi had pyloric stinosis and she would have to have surgery to correct this.  This was the beginning of a very long journey, and many many lessons that God would teach us. 
Kasi had lost the equivalent to an average adult losing 40 lbs in 24 hours.  She was very sick.  At 5 weeks old she has her first surgery to repair her tummy so she could start eating and keeping food down.  This surgery was supposed to be about 1 hour long and we would have to be in the hospital for about 24 hours.  After a 3 hour wait the nurse finally came out to report to us.  We were told that she was doing fine, but she suffered from a little tear in her intestine as well as the pyloric repair.  Because of this additional repair we would have to stay in the hospital longer, but they assured us that everything would be okay and she would be going home soon.  Although not in time for the Memorial Day weekend. 
We went in the recovery room to see her and we noticed that the alarm kept going off, but they had silenced it.  I asked about that, and the nurse said they are really touchy, but not to worry about it.  I really tried not to think about it, but it gave me a funny feeling.  I knew they were there for a reason, but I seemed to be the only one that was concerned.  Once again, I kind of blew it off thinking that I was the one that was going crazy being a new mom and the things I was feeling was just being anxious about that fact. 
When we made it on the floor to our very nice private room I seemed to get a little more relaxed.  It was such a relief to know that she was okay now and we would once again try to live that "normal" life.  Life would be a bit different, but a new normal would be good and I was excited for that.  As my mom and I, one and each side of Kasi's bed, rubbed her back we noticed that she was started to get agitated.  She was in a bouncy seat so we could put our arms under her and kind of hold her while she had tubes going in her nose.  She was uncomfortable, that was for sure, but we were noticing her get "different".  After watching her for a minute or two we both yelled, "she is NOT BREATHING".   She was done fighting for a moment.  Her body had gone through enough and she, at 5 weeks, quit.  I will never forget that moment.  Watching her, yelling down the hall, as my mom pushed the nurse button.  If you have never witnessed a code blue on the floor, it is something you never want to see.  Especially when it is your child.  Nurses and doctors flew in the room and I remember standing against the wall in shock really and then looking at Ron who couldn't watch any longer so he was looking out the window, tears running down his face.  As I recall this now even it brings me back to that place as if it were yesterday.  So much happening all at once.  I am not ever sure how long they were all in there, but I do remember that night wondering what was really going on inside this little one of mine.  As I slept by her bed I didn't even close my eyes.  I marveled at her and wondered what was ahead for us. 
The next morning our nurse came in and wanted to talk to us about something she was thinking about and things she had noticed about Kasi.  She began to tell us that at night she had listened to Kasi and heard a heart murmur and although a lot of kids are born with a heart murmur (which just means she had a noise in her heart) it was something she felt she needed to tell a doctor about.  She had made all the calls and we were told that a cardiologist named Dr. Malcolm was going to come down and just check Kasi out.  She was very nice and didn't seem to make us overly nervous about anything, she just wanted us to what was going on.  We were very grateful for that nurse because what she had heard was something so great that it has made a mark on people's hearts every where.  Her ears were the instruments needed to get us on the right road for Kasi's complete healing.  We just didn't know it would take so long. 
Dr. Malcolm came in our room and did an ECO of her little tiny heart.  Kasi laid in Grandma Brower's arms while he did his whole test.  It was amazing to see how still she would lay for her.  Kind of funny because we would take her along when she was 1, 2 and even 3 just so Kasi would lay still in Grandma's arms for the tests.  Otherwise young kids have to be sedated a little bit to lay still. 
The news we received after the ultrasound was mind boggling.  We were told that little Kasi had a coarctation of her aorta and that her aorta would need to be repaired.  It was something they felt they needed to do right away because her BPs, blood pressures, were very different in her arms then in her legs which showed that the narrowing was major.  She was hypertensive, or she had high blood pressure in her upper body, and hypotensive in her lower body.  Her lower body includes her belly, legs, and spinal cord. 
Our world was shaken.  Not to mention that she was so weak from her first surgery and being so sick with her tummy issues that we were going to have to wait until she was strong enough to survive a second surgery.  Dr. Malcolm started her on meds right away and we met Dr. Rudolpho Neirotti, the pediactic cardiovascular surgeon at DeVos Children's Hospital.  We felt blessed to have such a great doctor at that hospital to do this surgery.  He has amazing ability and is known all over the world.  We we relieved to say the least because we thought that he was the one to save our little girl. 
A week went by and we getting ready to go up to ICU so she could get ready for surgery the next day.  She was so sick and I was very scared.  I didn't know where to go for peace, of course we prayed for her, but at that time it was just a motion.  Something you did because it is the right thing to do.  I didn't feel peace. 
It is the second week of June now and Kasi is all ready to go in for surgery.  It is early in the morning and Pastor Rich came up to the hospital to pray with us and for Kasi.  I remember being in the pre-op room and seeing all the kids that were waiting around the corner to get tubes in their ears, but we were standing next to a huge bed with a little tiny baby in it.  (Kasi was now less then 6 lbs because of her tummy)  I can recall so many moments so clearly now, but others are such a blur.  It seems like God was speaking to me at those times, I just didn't understand Him.  Yet!!  The time had come for her to be wheeled away.  She was covered by her pooh blanket and really out of it.  She already had her central line in the night before so she was all hooked up which was hard to see.  I gave her a little kiss on the bridge of her nose and then on her forehead, which I still do to this day when she goes in, and walked out into the waiting room.  I remember the tears flowing down my cheeks unwilling to stop.  I sat upright not moving, just sitting and waiting.  A few people saw us sitting there and they walked over to us and asked us if they could offer a prayer for Kasi, and our family.  Who knew that they were praying for a lifetime of things, and miracles...
About an hour into the surgery the nurse, Kathy, came out for her first report.  Things were going really well.  They had opened and put a camera (I am not sure what it was) down her throat to check from that view what they were looking at and to make sure nothing else was going on with the heart.  They had found that she also had a hole in her heart between the two chambers.  This wasn't anything major because they can grow shut on their own, but it was something we would have to be aware of and look into sometime in the future.  Kathy then told us how she would be back, but it might be awhile for the next report.  I got up and got a cup of coffee trying to take everything in, which wasn't going over so well.  About a half hour went by and Kathy came out of the OR.  Her eyes were full of tears and she came and sat right next to me.  I will never forget the words that came out of her mouth that day.  She told us that Dr. Neirotti was closing and that the narrowing that they saw, measured, and went to repair was gone.  They tried to look at the hole that they had just found in her heart, it too was gone.  Kathy, who like me now, knows the power of God and was in tears because she saw first hand a miracle of God.  Dr. Neirotti, did tie off her PDA (seriously look it up because I don't know if I could come close to spelling that one right and I have a lot more to this story to type)  which was as large as her aorta itself.  The PDA brings oxygenated blood to the baby in the womb.  This usually closes on it's own in the first few days of a baby being born.  Sometimes it has to be tied off, mostly in premees.  Kasi's had to be tied off because it had not grown shut yet because she had a coarctation.  Had being the word to use at this point and we were all stunned and confused.  At the same time our Pastor said to us all, "we just witnessed a miracle" and that we did! I know that God was in that OR with her and laid His almighty hand on her and healed her.  I wish I could say THE END or "they lived happily ever after" but that is not the case.
Kasi went from the OR right to the PICU, pediatric intensive care unit, remember that because it is the only time I am going to spell it out :-)  She was going to have one on one care because that is the protocol for Dr. Neirotti's patients, which I as a parent LOVED!  Although I couldn't stay by her bed at night I did stay in the family waiting room and slept in a chair.  It has been a total of about 2 1/2 weeks that we have been in the hospital and I didn't step one foot out the door.  You know I didn't miss it either, but people were starting to worry about me.  I guess I understand why, but Kasi was my baby and it was my job to take care of her.  That was my thought process and I wouldn't leave her.  The next morning when it was time for the rounds to take place I was asked again to leave the room so the Dr.s could discuss her case.  They felt that Kasi was showing signs of distress when she was breathing so they were going to start her on some thing to help her not get pneumonia.  A respiratory therapist would come in and doing all kind of "stuff" to her which she didn't like very well, but after a while it didn't seem to be helping and she was going down hill.  Her oxygen level was going down and she started really struggling with every breath.  They ordered an X-ray and found that she had a very rare side effect  called cylthorax, which is a punchure or hole in her lymph system which causes your fluid from your lymph system to drain in your chest cavity.  This fluid was sitting between her lungs and her chest which made it close to impossible for her lungs to inflate.  This is a very uncommon side effect to heart surgery, and even more odd was that it comes from having open heart surgery and Kasi had closed heart surgery.  It was something to see them discuss who might have done this, they were debating between the Dr.s who put the central line in and the surgery itself.  Either which way, this was going to be a long, long journey in the PICU now.  At this point I am not at peace but kind of numb to everything that is going on.  I was staying pretty calm and I would just spend my day holding her and caring for her.  She didn't ever see her bed, yep she was very spoiled!!  If you can say that since she was in the PICU.  When the news came about this new development, that is when I started to have my break down.  I didn't get it.  Why God?  Why would you heal her so incredibly and now give her this?  Why Kasi?  Why me?  Why does this have to take so long?  It was getting close to dinner time and my mom and dad came up to sit with Kasi so Ron and I could eat.  As we got off the elevator Pastor Rich was getting on.  We invited him to come for dinner with us, at the cafeteria because I still was NOT leaving,  and he declined.  We filled him in on what was going on and he said he just really wanted to go and pray over her for a while.  Read scripture and pray, and then he looked at me and said this "God knows what you are feeling, after all He watched His Son suffer and die for you".  And then elevator doors shut.  Did he know all of my questions?  No, but God did and it was another point that I look back at now and see God speaking to me, right to my heart.  At that time, I didn't yet see it. 
The next few days were really rough for me.  I was not understanding this new side effect she had going on all I knew was I see all this fluid draining out of tubes that were stitched into her sides.  The nurses would measure it ever hour and it didn't ever slow down.  I was at my wits end when I left the room and went to the PICU bathroom.  I remember vividly what I did and what happen.  I walking to the bathroom looked at myself in the mirror and held my hands up to the ceiling and cried all of my questions right to God.  I bellowed my whys?  My biggest being why did you even heal her to give her this?  As I sobbed I fell to the floor and heard God say "she is my child".  I then fell asleep or something, and woke up to the nurse and I think my mom, pounding on the door.  That was the moment that my life changed.  All of this didn't have to make sense, nor did I need to know all the answers anymore.  Kasi is God's child.  On loan to us for a while, however long that while maybe, but she is His. I guess you could say that was my moment of salvation too.  I did grow up knowing God, but now,  I KNEW Him.  It was the first step of many in my growing that has taken place over the last 14 years.
When I walked out of that bathroom everything looked different.  I guess I did too because people started telling me how peaceful I was.  I had a testimony and I knew it.  God is with her and loves her more.  That Sunday Ron and I decided to go to church since it had been so long.  My mom and dad once again came up to sit with Kasi and we left the PICU with Kasi still hooked up to everything and tubes still draining.  It was refreshing to walk in a be greeted by so many people who loved us and prayed for us.  With my heart changed it was even better to be there than ever before.  Pastor Rich saw us in church and when it was time for prayer he asked if the elders would just go over to us and lay hands on us while we prayed.  Pastor Rich prayed for everything for us and mostly healing for Kasi.  We felt God's presence among us which was a blessing!  We then headed back up to the hospital refreshed.
When we got back to Kasi's room we saw the nurse in there looking to measure her fluids again.  It was draining a lot still before we left so we were wondering why she was looking so intently at the drainage.  We walked into the room and asked her why she was moving the tubing all around and such.  She said it was because there must be a kink in them.  That took me by surprise because she had been doing so well, draining.  She looked again to see how much had come out and then told us that Kasi seems to have either stopped draining or something is wrong with her tubes.  Our church service was 10-11 am....the last measure was the hour of 9-10 am.  Nothing drained after.  Yes, God did another miracle.  You see this side effect that she had, had to heal itself and that happens over months.  Yes, months.  I was told to get a huge novel and when I am done with that buy another and maybe another because it would be that long that she would be in the PICU with this.  It had been two weeks.  I right away asked the Dr. if now I could maybe get a smaller book and he actually said no.  The doctors thought that this was just a temporary thing and it would start draining again.  So we waited, and waited.  Three days we waited and then when I was going to go into her room from my sleeping chair, I saw a lot of doctors in the room and the bright lights on.  I kind of freaked out a little bit and just watched.  When they all left I went into the room to see what all the commotion was about and found out that her chest tubes had fallen out.  YES!!!  But remember they were stitched in....hmmm, God is good, and this time I gave ALL the glory to Him.  She was His child and He did heal her and now we are going to see Him in all that He does for her.  The doctors big debate was whether or not to put the tubes back in.  They decided that they would not put them in, but they were going to watch her in the PICU for a couple of days just to make sure she was not going to start draining and not be able to breath.  At this time, Kasi wasn't hooked up to anything.  She was off all meds and was a "normal" baby.  The nurses loved her!  We dressed her in all of her cute little dresses and just played and played.
We were discharged from the PICU the week of July 4.  And yes we were in the hospital the whole time.  We went up to the cottage for the 4th and really celebrated life.  That week we had our follow up with Dr. Malcolm and when we went there he did all of his tests and seemed to be really concerned.  We went to get a chest X-ray and answer a bunch of questions.  Kasi was gaining weight nicely, we thought, and she was a hot box.  Dr. Malcolm let us go home, but gave me phone numbers to call if she seemed to be worse at all over the coming weekend.  He must not have been able to take it because he called me at home the next morning.  He asked me if she was still sweating and I said yes actually, "I had to change my shirt twice already".  He asked us to come down to the ER right away and he would meet us there.
Ron and I packed her up, called family, and were on our way after only two weeks of being home.  Kasi was admitted and we found out she was in severe congestive heart failure.  This time they could figure out why.
I was at a different place when going in, knowing that God is in control and He would provide what we needed to get through this.  We prayed for wisdom for the doctors and for clarity so they could figure this out.  Finally after a few ECOs they thought they found what was going on.  Another coarctation of her aorta.  This time it was underneath her diaphragm which made it very hard to diagnose.  They needed to do a heart cath to really see what was happening inside her little heart.
This coarctation was something very rare with collateral running around it.  It looked like she had a butterfly in her tummy.  Not only was this rare, with the combination of what it was and where it was, it was truly never seen before.  Dr. Neirotti talked on our phone in our hospital room to many different doctors in many different countries asking and inquiring knowledge about her case.  She seemed to be the only case ever like this.  Dr. Neirotti was a little slow to act on doing this surgery.  He really wanted us to explore all our options and Dr. Malcolm made other contacts.  We did talk to U of M and a Dr. there that thought he could repair it, but he would repair it by patching it, and then at 3 patch it again, and so on until she would be done growing.  Dr. Neirotti explained to us that was an option, but at the same time that is what he didn't want to do because he doesn't install "zippers in his children".  With that one statement we wanted him to do whatever he felt he could to repair this.   He researched, until one day they came into our room and said they could not wait any longer.  Her body was not thriving anymore and we had to do something even though we weren't sure what that "thing" was.  She was put in the PICU that night again and prepped for surgery.  The next morning when they were finishing hooking her up, it was very different than the time before.  She was hooked up to so many wires and she had little electrodes in her ankles and head.  They were to tell them in the middle of surgery if her blood supply had been stopped too long to her spinal cord.  The were measuring her nerves to see if she had movement and then they told us all the risk involved.  The biggest being the blood supply being cut off to her lower body.  We didn't know if she would survive this surgery, come out not being able to walk, or if she would be fine.  This time though, it was different.  I did sob, but my sobbing, was not a loss of control, it was a calling out to the One who was in control.  This feels very different in the heart and it comes along with peace in knowing that God is! 
Dr. Neirotti and all his God given wisdom actually used Kasi collateral's to rebuild her aorta so she had all her own tissue to grow with her.  We are amazed at this yet today because there have been many people who have used this case to save others lives.  During surgery they made a bypass around her aorta so she would not be cut off for too long.  Now I look at her and yes, it worked!  Her new aorta was doing great and grew with her until her back surgery in Dec. 2008.  We went home after this surgery with only follow up appointments and actually in 2001 the Dr.s and nurse involved in Kasi's case wrote her case up in the medical journals.  I am not sure what the name of it is, but it is one of the most prestigious ones there are.  It made this a little more worth it to know that others can learn from her case.
And the learning goes on.  Here we are 14 years later learning about how her body is once again struggling to survive and doing a great job at that.  She looks great on the outside, but her insides are trying to find ways to get blood they need. 
After her back surgery in which they straighten out her scoliosis, she grew 2 1/2 inches in that surgery alone.  Since then she has grown two more inches for a total of 4 1/2 inches since Dec. 08.  Her aorta did not keep up on it's growing with her.  Her aorta is now narrowed from just past the aortic arch all the way down to her abdominal aorta.  And you know how rare it was before, this too is something no one has really done before.  There have been similar things done, but nothing the same.  Kasi has scare tissue and screws in her back to work around.  Her abdominal aorta lies right with the spinal cord and she has screws coming on each side of her aorta.  Dr. Stanley at U of M has been following her case since she was a baby, which is a God thing, and has done similar things.  He is one of only two that Dr. Neirotti suggested we see.  Dr. Neirotti has retired and lives in his homeland of Argentina.  We do not have "faith" in the doctors anymore, we know that God has placed Dr. Stanley here at just the right time for Kasi.  We also know that God will give him all he needs to know to do this surgery.  Her incision will be all the way down her chest and across her belly.  There is extreme risk to this surgery and a huge recovery time.  Dr. Stanley will be opening up her aorta the whole way and putting a patch on it. 
Now on to how we are.  Kasi is doing good.  She is strong and she is more worried about how we are than how she is.  I have my ups and downs and wrestle through these things with God.  He is an amazing great physician and we rely on Him.  Our faith does not waver.  We know that God's plans are perfect and His ways are right.  Understanding is not something I even ask for anymore.  I know that His plan is bigger than my understanding.  We are just a page, maybe a chapter in His book for His purpose.  I am very happy and honored to live for His glory.  And that is just what we are doing.  We are excited that people have stepped up to help us through a fundraiser, financially. And even they are seeing God at work among them.  I am growing in even more knowledge of Him as I have over the last 14 years.  We have continued to go to the cardiologist every year and usually more then once.  We have seen Kasi grow into a beautiful young lady who knows God and serves Him.  With 4 kids now, two of which were a blessing from God in a unique way, we have learned more about Him and have learned that our strength only comes from Him.  God's power is alive and well.  We still pray for a miracle to happen in Kasi's life and we KNOW she will be perfect one day.  That day maybe sooner than we would like it, but she could also live to be 100.  Only God knows all of our days.  We know this, God has proven Himself faithful, and she is His child.  We rest in knowing that He knows our hearts and He holds us close......
More to come later, but this was the history of Kasi.....
and yes we were at the cardiologist yesterday and I will catch you up on her later when Dr. Malcolm calls me and I have the whole story.
Keep praying!!!  God is good! 
Jodi