Friday, January 25, 2013

We Got To Hold Evan

Yesterday was another good day, even though we had several ups and downs.  The heart ECHO showed improvement and they were able to extubate Evan successfully.  He was a trooper and handled it just fine (in a lot of cases they have to re-intubate, because the baby is not able to breathe on its own). He as proven over and over that he is a fighter and we couldn't be more proud of him!  He is still on heart medication right now and they will try to wean him off that over the next few days and see how his heart will handle it.  If the heart function continues to stay stable or improves more the heart is no longer the biggest concern for Evan.  His kidney function and the blood clot in his aorta are a bigger concern right now (and his blood pressure went up again a little bit).  The doctors don't see clots in veins very often, it is rare.  They do see them in vessels more commonly.  Nothing about Evan has been "normal" or "fit into a box".  He has given every doctor a run for their money.  The doctor said last night "I have come to learn over the last few days that I can't predict Evan.  He has thrown a lot of curve balls at us."  After I asked another questions he said "We can't get ahead of ourselves.  He is still very fragile and we have to keep in mind that he was trying to die on us Saturday night and look at the improvements he has made since then.  I would like to take credit for it, but Evan is a much better doctor than I am".  When he said out loud what was happening on Saturday night it just made my heart sink again.  All the raw emotions from that night came back and it was just painful.  I know I will never forget that night, but I am praying that the pain from those emotions will get easier and that one day we can look back and look at our miracle baby with pure joy and happiness in our hearts and not have to worry about that night anymore.
The dietician crunched thousands of numbers for several hours yesterday to determine what they can feed him.  Due to the potential metabolic disease (still waiting on test results) and due to the kidney function he can't have certain fats (metabolic reason) and proteins (kidney reason), which limits his feeds quite a bit.  They did come up with a formula last night that they are trying to see how he tolerates it.
I watch the monitors like a hawk when I am sitting next to his bedside.  Every time the alarm goes off or one of the machines beeps my heart starts to beat faster.  I hear alarms in my dreams now and wake up.
Now for the best part of our entire week.  We got to hold Evan last night!  This was the first time I have cried tears of happiness.  It felt so good to hold my sweet little baby.  I did not want to put him back in his bed.  It just felt so right to hold him.  This is where he belongs.  Please pray that Evan will continue to make improvements and that he will continue to surprise the doctors by healing.  He truly is a miracle baby and we are so very proud of him.
He looked so much better after removing the breathing tube and they were able to swaddle him for the first time, which he really likes

I am going to put mascara on this morning, because I feel like it is going to be another good day and I will not cry!  This is what I have been doing and telling myself over the last few days and it has worked.


  1. Katrin!! I am crying tears of joy reading this!!!!!!!! I'm praying for all of the specifics above ... his kidneys, his blood clot, heart function... most of all, complete healing! I am so proud of Evan and I am praising God for all of the wondrous things He is doing in his little life already!!! Love you all!!!!!!

  2. I miss him so much, and am so proud of all the progress he's made this week. I pray for another good day every morning, and I thank God for his good days every night. Give him a big huge kiss from his Aunt Allison...I love you Evan!

  3. Ich hoffe jeden Tag gute Neuigkeiten zu lesen bzw zu hören!!! ich denke sehr viel an dich/ euch bewundere deine Stärke und wünsche dir jeden Tag Kraft!! Freue mich so sehr dass es evan besser geht!! Wünsche euch nur das beste und bete jeden Tag für einen weiteren guten Tag!!! Grüße vom anderen Ende der Welt!!! Dein Cousinchen!!!

  4. Katrin, I LOVE, LOVE, LOVE that you got to hold your sweet boy! What a blessing! Prayers continue for answers, strength and wisdom for all involved!

  5. so very happy for you that you got to hold your precious son! i am praying for a complete healing! what a testimony he (and yourself) will have!