Tuesday, January 29, 2013

Dear Evan

Dear Evan,

Yesterday was your 2 week birthday.  You have gone through way more in two weeks than most people go through in a lifetime.  I want you to be able to read this one day and know what a miracle baby you are.  You had a rough start to life.  You had meconium aspiration during birth and they had to keep you in the nursery hooked up to oxygen and an IV for the first 12 hours of your life.  It was a very long night of worrying for me.  They had to do two xrays on you to make sure your lungs cleared out.  They wanted to keep you another night in the hospital, but were ready to discharge you the next day.  The next morning you developed jaundice and we had to stay another day and night under the bili light.      Thank God.  The next morning you did not look good.  Your color was awful, you were breathing really heavy, did not want to eat and were really out of it.  They called the NICU doctor to examine you and he took you straight up to the NICU.  At that point I was a big mess.  How could we go from being discharged to the NICU in such a short period of time.  Little did I know what was coming next.  They performed an ECHO on you, which was read by the cardiologists in Little Rock.  They sent the Angel One helicopter right away to come get you.  not even two hours later you and your daddy were on your way to Little Rock.  I completely broke down when I saw the helicopter take off.  At that point that was the hardest thing I have ever had to witness.  Your Oma, Hannah and I packed up the car and started our drive to Little Rock.  On the drive down I heard from Scott and he said that it is not looking good and that he was scared.   I couldn't believe those words.  I was so happy to finally see you and your daddy again that night.  They put you in isolation, because they were unsure of what was causing your heart failure.  You were put on all kinds of medication and tubes and lines were everywhere.   The next morning (Friday) your color was a little better and we all felt a little relief.  Your heart is formed perfectly, but the function was poor.  The muscle was not squeezing hard enough and therefore not pumping blood good enough.  The fear was that it would start to affect other organs, because of not getting enough blood.  Throughout Saturday you were working really hard to breathe and your blood pressure was through the roof and your renal function was declining.  I left the hospital for a little bit that evening, but received a call from Scott shortly after I left.  He was crying and I knew things were really bad.  They did another ECHO and his heart function had gotten really bad.  They needed to intubate him fast to take some stress of the heart (breathings takes up about 20-30% of your hearts work).  We rushed to the hospital and were so so scared.  The team of doctors was preparing for the procedure.  It is high risk to intubate an infant.  Lots of things can go wrong and they had a team ready to put him on ECMO (life support).  It was the longest 45min of my life.  We did not know if you were going to make it.  When the doctor came in and told us that you handled the intubation just fine we knew that your are a fighter.  We were so very proud of you.  At that point the doctor talked to us about next steps.  They were moving you upstairs to the Cardiovascular ICU.  The best case scenario would be that your heart function improves and that the muscle is healing.  He said the next 7-10 days are critical and if it doesn't get better they would have to consider putting you on the transplant list (if you are a candidate).  No infant or parent should ever have to go through this.  It is extremely hard for me to write all of this down and relive this night, but it also feels good to put my emotions down "on paper".  The next morning you looked so peaceful and we knew that intubating was the right decision.  You were not breathing hard anymore and were resting.  Your ECHO the next morning already looked better.  We knew that all of the prayers were working.  You started your miraculous recovery.  The doctors were pleased with your improvements.  We still had no idea what caused all of this.  All of the tests for bacterial or viral infections came back negative.  They tested you for everything and had to take so much blood for labs that you needed a blood transfusion (you have had 3 by now).  There were specialists for everything coming to see you.  Infectious disease doctors, metabolic doctors, geneticists, cardiologists, renal doctors and the list goes on......That Sunday I looked up the meaning of your name and it means "gracious God" and it celtic it means "young warrior".  I knew we picked the right name! We have had lots of ups and downs since then, but overall you have surprised everybody and given every doctor a run for their money.  On Tuesday we finally got some test results an we thought we had an answer to your problems.  You tested positive for the CMV virus, but none of your symptoms matched the virus, so the test was repeated twice and came back negative both times.  They ruled out this virus.  You also tested positive for a very rare metabolic disorder (body can't break down long chain fats).  This test was repeated in more detail and we are still waiting on the results.  There are only two labs in the US that test for this, so they had to send it off and it can take a while.  We have had lots of scares about your kidney function too.  We know there is some damage to the kidneys, but we are hopeful that they can recover.  The kidney function has improved over the last few days.  Your blood pressure is still too high and you are on two medications for that and they are still uncertain what is causing your high blood pressure.  I don't know how many times we have heard now that they are still clueless about your case.   You are still undiagnosed (you were diagnosed with cardio myothophy, but no cause for it).  You have not had any symptoms that match any other case they have seen.  Your are unpredictable and that is what makes you such a miracle baby.   They discovered a big blood in your descending aorta (just one more thing to worry about) and put you on blood thinner to dissolve the clot.  They said it varies greatly on how long it could take to dissolve a clot that size and said it could be months.  The hope was that it would dissolve and not break off (they think little pieces could have already broken off and caused some of the kidney damage).  Yesterday they did another renal ultrasound and the blood clot is almost GONE.  They were able to take you off Heparin (blood thinner), but have to continue giving you an anti clogging shot.  Please continue to surprise everybody sweet Evan.  I do feel like I have been in med school the last 2 weeks, but I am sure I am still getting some of the things wrong that I am writing.  I am doing the best I can to remember everything and put it down on paper.  Your heart function also continued to improve and the last ECHO looked much better.  Good enough that they thought they can extubate you.  This was done last Thursday and they warned us that not every baby takes it well and they may have to re-intubate.  Not you, my little man.  You handled it like a champ.  You were still getting oxygen, but you were doing so well after you were extubated.  They also slowly weaned you off your heart medicine and took it off completely the day before yesterday and your vitals have not changed.  They also took the oxygen off last night and your saturation is still at 100.  I know I am jumping around a lot now, but there is just so much that has been happening it is hard to keep it all in order.  They started you on the feeding tube last week at 5ml per hour (it was going directly into your intestines and not your stomach).  The dietician and metabolic doctor had to crunch numbers for hours to come up with a formula they could feed you.  They can't give you long chain fats until the metabolic test comes back and they had to limit proteins due to your kidney function.  They are able to skim my breast milk and give him some of that along with other things.  They call it the "Evan cocktail".  They had to stop feeds a few times, because your system was not handling it well (and they had to do another xray to make sure there was no blockage) .  They finally found a formula that you tolerated well and you have been doing great on that.  Since your oxygen was low enough they decided to move your tube into your tummy and give you some feeds.  Yesterday we got the great news that they were going to try and bottle feed you for the first time.  I had the honor of doing that and you did great.  You have had an occupational therapist work with you in the last week on your sucking.  You also have a respiratory therapist work with you too (I had no idea all of these things exist).  At two weeks old you have filled up two big binders with your medical records so far.  I am hoping that one day it will just read "undiagnosed.  miracle baby".  The doctors and nurses at ACH have all been fantastic.  We know we are in the best hands possible.  Evan has had lots of visitors from doctors and nurses that treated him before.  They all want to know how he is doing and can't believe he is the same baby.  I am hoping this week we can move up a few more rooms and not be in the second to last room anymore.  You have so many people all over the world pray for you.  Here are my prayers for you right now.  I am praying that your heart and kidney function will continue to improve, I am praying that they can finally get your blood pressure under control.  I am praying that the blood clot will dissolve completely.  I am praying that they can wean you off more medicines.  I am praying that there will be no more issues and that we are on the road to a full recovery.
Evan, you have touched a lot of peoples life by now and you are very loved.  Your mom and dad could not be more proud of you.  We cannot wait until we can take you home.  We love you and your sister more than anything!  This has been a huge test for our family, but it has also made us so much closer and stronger.  The thought of losing you was unbearable and I am so happy that we are here today.  Here is to many more "mascara days". I love that I gets lots of texts and emails hoping for another mascara day.

We love you,
Mom, Dad and Hannah

Your first bottle

7 comments:

  1. Thanks so much for the update! It sounds like Evan is a miracle and a fighter! The meaning of his name gives me goosebumps. The fact that he took so well to his bottle is wonderful! I had no idea they could skim your milk, it sounds like he has an amazing team taking care of him. I will continue to pray that God will do more than we could ask or imagine with Evan's story and of course with the story of how your family endured these hard times. Love all of you!

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  2. I wake up every morning looking forward to my pictures and videos of that little guy. He is so loved, and his whole family is so incredibly proud of what a fighter he is. He truly is our little miracle baby, and I thank God every day for answering our prayers and helping Evan to heal. Your family loves you to the moon and back Evan!!

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  3. Thank God for miracles. Thank you for keeping everyone informed. I don't know you, but I know Nina. I will continue to pray for sweet little Evan. Janie Jones

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  4. You don't know me either, I am Rebekah Gudgel's mom. Our church has been praying for Evan, and are so excited for each bit of good news. We will continue to pray for a complete healing.

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  5. I'm a stranger, too. I'm friends with Hannah Carter, and I've been praying for sweet Evan. All three of my kids did time in the NICU when they were born, and so much of what Evan is going through is painfully familiar to me. (My kids were much easier to diagnose, though.) I can tell you that God is good, all the time, and now my kids are 5,3, and 1, and their hospital time is just a memory - just a little blip in an otherwise healthy, happy life. I can also tell you that God is holding your sweet baby in His loving, capable hands, and I know it hurts your heart that you can't hold him - but God is the ultimate Parent. He'll keep him safe, until He can turn him over to you. Prayers to your family. :)

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  6. Lisa Tanner RumbaughJanuary 29, 2013 at 8:20 PM

    What an amazing story! We have been following closely since getting the notice from Jeannie of Evan's birth. Our family is continuing to pray for the little miracles that Evan performs each day and for guidance for the doctors as they continue to put together the puzzle pieces that are Evan. God has all of you in his hands, bask in the comfort! (and keep applying that mascara!)

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