I know my last post regarding Presley was very positive. Furthermore, I know that I seemed giddy in my post. Truth of the matter is, I was.
Since Monday Pres has done so well! She was weaned down to .1 of oxygen, not 1 liter, but one tenth, almost nothing. All of her medications, except for one, were discontinued and yesterday she was moved to the pediatric floor. I have been elated with her progress!
However, this morning, I noticed that something about her just seemed off. She was crossing her eyes and her body seemed so rigid. I asked the nurse to call one of the PICU doctors who are familiar with her. After the doctor came up and looked at her, he said they may have weaned her narcotics too quickly and she may be in a slight withdrawl.
He started her on a very small dose of methadone and ordered it for twice a day and to be weaned to an even smaller dose in 4 days.
I did see an improvement after he gave it to her, however, it seemed to wear off before her next dose was due.
Furthermore, when trying to wean her O2 levels from .1 to room air, she continually failed.
Even as a respiratory therapist,this just stumps me! I can't seem to wrap my head around the fact that such an itsy bitsy amount of O2 can make such a difference. I was feeling so frustrated, that by days end I felt the most unforgivable feeling I have ever felt.... I actually felt mad at Presley!
I can't help but cry in shame as I post this, but I only want to journal my truth. There was this instant that I looked at this precious baby and thought 'Because of all this, I can't be with Mikah and Jett, because of all this, our life is turned upside down! Why can't you just get well??'
I hate myself for this. Every being of my soul knows this sweet butterfly hasn't chosen one bit of this journey, not to mention, she has had to endure far more than I have had to endure.
I didn't think I was going to post any of this on the blog. Instead, I thought I would take the time to catch up on a few of my favorite blogs and try to escape my reality. In doing so, I ran across a couple of nice things on other blogs, regarding Presley. Things I didn't know people would be posting. Three blogs I went to and poof, there was a post about Pres. It made me think that perhaps God was trying to talk to me?!?
That thought led me to reread the comments I received on my Spiritual confusion post from a while back. Friends left some amazing advice on that post. I even reread some of the personal emails I received from that post. It helped immensely to revisit them. It helped me realize, I just need to let go. Let go and trust the Lord.
I want so much for Presley, but I may want too much, too soon. It is like I am not giving her the break she deserves. She has come so far and gained so much the last few weeks, yet all I can seem to focus on is what she still lacks.
Her cardiologist said I need to write across Presley's forehead "Born at 29 weeks" because he says I keep forgetting that. I joked that after writing that, I would write "mom in denial", across mine!
It is true, with ALL that Presley has had to endure, I tend to forget that part of her physiology. Yet that is a HUGE part! The wonderful thing is, that part is fixable with time, her mommy just needs to give her that.
For those of you who are diligent about praying for my Pres, please pray that her mommy can find the grace and patience to cut her a break. And please pray that her mommy is forgiven, for thinking for one minute, that she, this precious little wonder, is at all to blame.
Presley's story...
Hello, my name is Presley & I was born February 19th,2008. My mommy was having a difficult pregnancy due to increased amniotic fluid so at 28 weeks she went to see a specialist who told her I had something called duodenal atresia. Due to this intestinal problem it was certain that I would have to have surgery after birth. The specialist also said this condition indicated that there was a possibility that I could have Down syndrome & that mommy should have a test to be sure, which she did. One week later mommy started contracting & bleeding and went to the hospital. That morning mommy's doctor confirmed that I did have Down syndrome. This scared & saddened my parents. Later that evening I was born, washing away much of the sadness. The next day they looked at my heart & said I had a heart conditon, common to Down syndrome babies & that I would require yet another surgery to correct this. Mommy & Daddy got sad again. Since then, the 1st 6 and a half months of my life were spent in the hospital, along with three surgeries, a ton of prayers, alot of tears, plenty of smiles & more blessings than my parents could of ever imagined. You see, at first all anyone could see were the diagnosis & all the fears that they entailed. BUT NOW!?! Now they see me! And well, I don't wanta brag or nothin' but it is kinda hard to think of bad stuff when you look at me!!
Mommy's story...
Hello, my name is Kele & I am the proud mother of this little butterfly. Presley told the story pretty accurately. However, I choose to share some of the more personal emotions & thoughts in regards to this journey the Lord has felt to put me on. When we initially received the news of Presley having Down syndrome, I truly felt as if my life, as I had known it, 'perfect' & uncomplicated, was over. I mourned the loss of this 'perfect' life for weeks. This whole idea of having a 'special needs' child threw me into the darkest & saddest place I have ever been. I would wake in the middle of the night only to realize it wasn't a bad dream...it was my reality. I have never cried more tears in my life. To be brutally honest, there were many times that it wasn't even about my sweet Presley & her well being at all, it was just about the fact that this messed up MY idea of MY life!! You see, my life was supposed to look like that Estee Lauder ad, where this beautiful, perfect family all lay on the beach in matching wool sweaters. Have you ever seen that ad? LOL! I mean, it was all pretty wonderful so far. I was lucky enough to be a stay home mom, 2 adorable, healthy children, married to a hottie, great family, good friends, nice home...seriously, all I needed were the wool sweaters. In some of my darkest times I would go online. I wouldn't necessarily search for medical things regarding Ds but more personal things. I stumbled in to the world of 'blogs'. Looking into the lives of families that also had children with 'special needs' & I found myself saying "wait a minute, this family is adorable" & "Wow! what a cool family". Every night, for several hours, I would do this - visit these family blogs, I was truly addicted. It was then that I realized that so many of these families were amazing, beautiful, 'perfect' families and most times, not in spite of their 'special needs' child, but often times because of that child. The stories on their blogs were touching & profound, the siblings were usually wonderful & amazing. Then I realized...maybe this 'perfect' life I have dreamed about doesn't have a damn thing to do with those wool sweaters...I mean, I live in Texas for God's sake!! Maybe it has everything to do with this little girl...this new little butterfly who has fluttered her way into our hearts. She has already taught me so much since the day the clouds parted for her arrival into our lives. I have no doubt the best is yet to come & that is why I created these two blogs, PresleyandT21.blogspot.com to chronicle Presley's journey. And as for our family blog? Well, where as I certainly invite you to join the fun & would feel honored if it inspires someone in need, as I was, it is truly a site created for me. In case there is ever a night in which I am doubting that my life is any thing less than amazing, incredible, full and yes....'perfect', I won't have far to go... Gilesfamilyof5.blogspot.com
WELCOME ALL...
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4 comments:
Hey sweet heart. Don't beat yourself up honey. You are normal. You are exhausted physically and emotionally. We all know how much you love your sweet angel and you know that too. We love you!
Praying for you and Pres!
Nicole
oh hang in there kele.. i think what you are going through is perfectly normal. just think of what you have all gone through... your emotions are going to be like this for a while. Presley is doing so well though. We are still saying a prayer for her! hugs!
9 comments:
Janet Wommack said...
Kele--I love your honestly and you have absolutely nothing to feel shame or guilt about. My mind and heart cannot begin to comprehend what you and Mike have gone through the last few months. I came across one of my favorite quotes in my Daily Bible Walk the other day: "God grants with each burden the strength to bear it--seldom more, never less." He will give you strength, understanding, peace--whatever you need at the time--at just the right time and in the right amount. Remember that lots of people are praying for Presley and you.
August 30, 2008 9:02 AM
Rachael and Chris said...
You have absolutley nothing to feel ashamed about. I just read your post and all I could think was, "I love this woman's heart." If I can think that, without ever having met you, just imagine how much God must love your heart.
P.S.--I'm glad you came across my post about Presley when you needed it. And thank you for responding to it...you know more people are going to come to your site now, right? They'll see that "Kele" posted a comment and they'll say "oh, that must be her"...and off they'll go to read about Presley, Mikah, and Jett. :)
August 30, 2008 9:52 AM
Emily said...
I love ya! Enough said...
August 30, 2008 12:24 PM
Sue said...
Kele...You are on such an emotional roller coaster right now. You have not known any type of normal (if there is such)life in quite a while. You are tired. Things looked very positive and then they didn't...you are human. Don't beat yourself up with they way you felt. Today is a new day...God's mercies are new every day. You are an inspiration and you can not let what you felt in a weakened moment get you down. We are still praying!
August 30, 2008 1:47 PM
Heather said...
"As faith is strengthened you will find that there is no longer the need to have a sense of control,that things will flow as they will and you will flow with them,to your great benefit and delight."
Peace Kele.
*did you get my email?
August 30, 2008 4:48 PM
Joella said...
Kele I'm so glad you're sounding better today, last night when I talk to you I was worried and I started praying for GOD to help you, give you strength of a super women, and faith in him that he know what he is doing. And of course to carry you right now when you are so weak. You need to let everyone help you out. If we didn't want to help we wouldn't, that's what GOD children are suppose to do, be servants. So don't denied us the privilege to do what we are suppose to do for GOD'S children. There will come a time when you will be on the helping end not the receiving. We love you and your family and just want to make you life a little easier for a couple months.
August 30, 2008 8:23 PM
Theresa said...
Kele,
You constantly amaze me. Your stregnth is more than you know, for you to have shared your true self in the land of unknown was truly inspiring to me. I know God has forgiven you, Presley has too, all that needs to happen now is for you to forgive yourself, I know easily said than done. Trusting God doesn't always come naturally but if you do you will find so much comfort and relief you will be amazed by it. Know I love you and am here if you need me.
August 31, 2008 10:28 AM
Sophie Belle's Mom said...
Oh, Kele. You are an incredible mother to all three of your children... but (clearly to your chagrin) you are still human. For what it's worth, sometimes in moments of doubt or despair what helps me is something I picked up from another mother some time back. It's based on Psalm 46:10:
Be still and know that I am God;
Be still and know that I am;
Be still and know;
Be still;
Be.
(I'm a Seinfeld fan, so I like to think of this as my spritual "Serenity Now.")
Be still, Kele. She is getting well. ;)
August 31, 2008 8:26 PM
Jeanette said...
I have been following Presley's progress thanks to a fellow Blog All4MyGals. We are praying for Presley and your family as well. We had such a TINY piece of what you are going through with our little Sydney and her stent in the NICU. I remember my 4 year old son asking me not to go back to the hospital one night and I broke down and bawled! I cannot imagine what all you are going through, but do Trust in the Lord and look to Him for your strength. I remember each stride Sydney would make, I was ready for the next. It felt like forever waiting for her PulseOx to be JUST right. The nurses tried weaning her several times, just to take two steps backwards. Hang in there. It appears that you have a bunch of prayer warriors watching over you. I see the pictures of Presley and see a familiar face to my baby girl. It just makes me pray harder for Presley's recovery.
September 1, 2008 12:15 AM
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