Wednesday, March 16, 2011

Day 45

Let me begin by saying how therapeutic my "Day 44" blog has been.  As I realize that most of what I said was in a rant form, it was so nice to just get it out.  To type on wet keys and to see through squinted eyes full of tears.  I needed it.  I needed the world to know what I was feeling.

Today started with much relief and stress.  I was able to get one of the coveted sleep rooms last night.  I took it not for the actual bed to sleep in, but rather for the clean shower.  During my stay in this room (room number 7 might I add) I had a long talk with God both last night and this morning.  As I always ask for His healing hand on Wyatt, but this morning I also prayed for myself.  I prayed that if His will was for Wyatt to have this trach, then I prayed that He could help me be the strength that I needed to be, to be able to deal with it.  I prayed that He guide both Mike and I as we make this terrible decision.  I prayed that He help me be able to tend to and take care of all of the needs that may arise during this time.  I prayed that He lead me to be the mother that Wyatt needs.  I also prayed that He help me see the positive in this time of darkness.  Coming back to Wyatt's room, I felt a sense of peace as well as fear.  Peace, because I knew that regardless of what needed to happen, I could deal with it.  I am a mother, and mothers in general do what needs to be done.  It's later that we are able to fall apart.  I felt fear because I knew that I was going to have to witness Wyatt's last chance before this decision.

I imagine this fear to be much like someone who is in front of a firing squad.  It's like you know what is going to happen.  You want it to hurry and be over with, but in the end, you know what the result will be.  It's hard to be happy for the result, but you just want it over with.  The easiest way to describe it is in this way.  I wanted it to just happen already, but I didn't want to witness the helplessness I would feel for not being able to help my baby.

Wyatt was asleep when I got in here.  Our night nurse, Florence (who I adore) was already gone.  Yes, I over slept a little.  Our day nurses were Allison and Cathy.  They said that Florence said that he had a good night and that all of his CPAP trials went well.  Good news.  At about 10 the respiratory therapist came in.  I was curious as to why she was there.  I knew they weren't going to extibate him until the afternoon.  When I asked if they were going to do a CPAP just before extibation, she said yes.  I was a little upset, to say the least.  I felt like he was being set up to fail.  At any rate, he failed this CPAP.  I was heartbroken.  It was like a dagger in my heart.  But the doctors came in and talked to me.  They wanted to give Wyatt another try.  So, Dr. Bridges (who I have decided that I really, really like, by the way) said that he wanted to give Wyatt every chance possible to succeed.  He said that they wanted to do CPAP trials throughout the night and try again tomorrow. 

While this is good news and gives me hope, I have another day of fear.  I know that there is a very great possibility that he will fail extibation tomorrow.  And while I still want to have hope that he will pull through like a champ, I don't want to set myself up for heartache.  I must be realistic right now.  I must be prepared for what is possible to come.  I cannot allow myself to live in a fantasy world full of flowers and rainbows.  It's time to play grown up, regardless of how hard that is going to be.  I have to be strong for this child.  I have to be strong in order to get ready for the care that he will soon need.  

So, I have come to the reality that my baby will more than likely need a trach.  I can accept it.  I have asked the family resource center to get me some materials on it so that I can be well versed in it, prior to surgery.  I want to know it inside and out.  I want to have educated questions when talking to the doctors.  I want to know that this is the right decision for Wyatt.  I need to know that there are no other options for my baby.  I don't want to go into this blindly and become consumed with something that I never saw coming.  

As a side note, Florence, our nurse again tonight, told me something last night that has helped me to process the fact that I will not be able to hear my baby.  She said that some families start teaching their children sign language as they would teach them to talk.  This way, they have a form of communication until the trach is (if the trach) is able to come out later on.  For some reason, this concept has really brought me solace in all of this.  Knowing that there is a form of communication for my child and I.  Even though I know he can hear me, there is a form of communication out there to help me. 

Now, I know that I touched a little on the fact that later on the trach may be able to be taken out.  The doctors, of course, can not tell me with 100 percent certainty that this will take place.  But, they feel like as Wyatt grows and gets bigger, so will his airway and muscle tone, allowing him to breathe better.  This also gives me hope.  I don't want to "hang my hat" on this fact, but honestly, I think this has helped me to get through this.  Knowing that we have a goal to shoot toward.  Something that we can work for.

I also want to say that no one should ever wish someone to grow up, especially a mother.  A mother should never want her child to hurry and grow up.  In many ways, I do.  Because if he would just grow and get bigger, I know that many of the challenges he is facing would all be behind us.  I don't want to rush his milestones, but lets be honest, will he make many of these milestones with the trach?  How does the trach harm his walking or even crawling?  Have I mentioned that Wyatt wouldn't just have to have a trach, but will have to be on a vent?  Yeah, so how will that work?  We will be home bound, for the most part.  He will have limited interaction with other children for risk of illnesses.  He won't talk like a regular child, he won't laugh (don't even get me started on this again) and the list goes on and on.  I have so many questions and for the most part, the doctors have been hesitant to talk with me about the trach.  I honesty feel like they too want Wyatt to succeed.  They want him to be a success in all of this as much as I do.

I don't want this post to sound like I have become hardened since last night's blog, because God knows I haven't.  I've cried several times today, on many doctors.  But in so many ways, I want to be ready for whatever it is that we will be facing.  I don't want to be blindsided by anything.  I want to be ready and informed.  I want to be a good mother who has all of her facts prior to this major life change.  Lets be honest, it's not just poor Wyatt, but both Mike and I who will have a major life change.  And don't think for one second that I am upset by this.  If I had to shave my head, wear a burlap sack, eat liver and listen to Yanni for the rest of my life in order to make sure my son was taken care of, I would, all while wearing a smile on my face.  I will do whatever it takes, no matter what the cost, to make sure my child was taken care of to the best of my ability.  And I want to be the one who takes care of him.  I want to be the one that makes sure that he is getting what he needs, be it his health care, emotionally or otherwise.  I don't feel like I deserve any accolades for this because I am his mother, and that's my job.

I'll end for tonight, mainly because I am tired.  It's been an emotional roller coaster, more so than most days.  And I know that tomorrow will be much of the same.  But I want to leave you with this.  Shortly after Wyatt was born I had an epiphany.  It was one of those moments when you just know something so deep in your core that there is never anyone on the face of this earth that will ever be able to convince you otherwise.  My epiphany was that I knew my purpose in life.  My purpose in life was to be Wyatt's mom.  God put me on this earth to raise Wyatt.  To provide for him and nurture him.  To love him and teach him.  If I never do another thing so long as I live, I will always know that I am fulfilling my purpose in life, being Wyatt's mom.


  1. Amanda I am so happy to hear that u have cried. I want u to know that u will be in our thoughts and prayers today as they do the trial without the vent. If Wyatt has to have a trach then that will give him time to grow and strengthen his little body. I agree with your nurse, I guess because I am a nurse. Lord I take this time this morning to pray peace on Amanda and Mike today. I pray your will be done in Wyatt's life. Lord I pray u touch h with ur continued healing hand. Be with all the medical caretakers. Lord give them the strength and knowledge that only u can give. I pray all this in Jesus Name. Amen and amen

  2. You ARE WYATT's Mommy!! Before God made you, he knew you were gonna be WYATTS MOM!! You were PERFECTLY made for one another. I love you. Keep on keeping on sister!

  3. Amanda, I hope you realize what an inspiration you are to so many people as you allow your heart to speak to us through these daily lessons. God is truly using you as His vessel to pour out to us the great need for Him as our Savior to guide us , strengthen us and allow us to find comfort not only in the lonley corridors of a hospital but everyday, everywhere. I can't even imagine how many mothers and even fathers, have given their children an extra kiss, a longer hug, a listening ear, or have prayed a special prayer of thanks all because of what you have shared with us. The Psalmist writes in the 46th chapter..'God is our refuge and strength, a very present help in trouble' ...I know from experience that there are days when it feels like He is far away but on the days when you can't pray, he allows us to petition the heavenly throne on your is our honor to participate in any way in God's plan for your special family....I love you , Mike and Wyatt and am praying without ceasing...I am so very, very, proud of you...