There was little to report yesterday in regards to Presley's status. She is doing well in that many of the tubes, IV's and medications are being pulled and discontinued.
Dr. M is this weeks PICU pediatrician, and my favorite of all her PICU doctors. He was being aggressive with her diuretics yesterday, as she was still very swollen.
Not too much change today. Again, a lot of fluid and again, Dr. M is being aggressive where that is concerned.
Dr. C, her cardiologist, just stopped by and said that from a heart stand point, she is doing great. I love hearing the word great.
Presley is little more alert today, but still no shining eyes or big smile.
We just need to get over this next big hurdle, that hurdle being extubation (getting off the ventilator).
Being in congestive heart failure for as long as she was, she also has being a preemie to contend with. Coming off this ventilator is going to be a feat. I know she can do it, Lord knows she has proven time and again how tough she is. Never the less, I will breath a huge sigh of relief when that breathing tube is pulled!!
Not much else to report. She is fluttering along and making us proud, as usual.
Thanks so much for checking in and I will continue to keep you all updated!
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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14 comments:
Checking on your blog often for updates, glad to see this on. Yea, so glad to hear her heart is doing GREAT. I know she will come off the breathing machine as soon as she gets a little more rest. Her bright and shinny smile will return with more luster than ever before, I just know it. Prayers are being sent multipul times daily for her quick recovery. Thanks for sharing her with all of us.
Oh that sounds like lots to report! Any discontinuing of stuff is always good news! If they take it away, then it's because she doesn't need it anymore. I am still praying for her. Gabi had a little bit of problem once extubated and that was with full term lungs. If she doesn't tolerate it well ask if they can try steroids, cpap or bipap first before reintubating.
Kele,
Wow, you are such an inspiration! Your journaling is so touching I feel as if I am there with you. I feel your pain, the excitement of Presley's achievements, the loving support of Mike (I love the wink story) and your desperation of trying to research and learn everything about T21. As kids everything was just a thought away and days were full of happiness, you have grown into a beautiful person, mom, wife, child of god and yet you are vulnerable but take it with a wonderful attitude. When things are perfect we act and behave in a certain way but our true character comes out when we are challenged and how we are going to handle it. I believe you do have the perfect family and look forward to reading about Presley's accomplishments and the Giles family. Kele, I will pray for strength for you and Mike and health for your children, you will get through this and from afar it looks as if you are handling things very healthy.
As I said this morning,all really positive baby steps.Actually,some really good big steps as well. Maybe we should put the word out for a few "pee,pee" dances on behalf of Miss Presley.There are tons of people out here willing to do that and what ever else they can for your sweet butterfly.As for extubation. You do have those little miracle drug names I gave you handy,right?They were the magic combination for Zoey and IF,that's a big IF,if Presley needed them,they would be worth a shot.My prayers continue.We pray for that fluid to get pulled off her precious body and for her puffy little tummy to come down as well. Stay strong Kele,your doing great.As for that smile,it's there,it's just waiting for that perfect time to show itself!
That's wonderful news...actually it's GREAT news! That her heart is doing great is definitely an answer to prayers! Thank you for updating the blog...I know you have a lot on your plate but the more we know the more specific our prayers can be for your sweet Presley!! We will continue to send constant prayers your way from Houston!!
Tera
Hi, Kele
Your blog was a link on one of my friends' blogs. I never click random links, so I'm not sure what made me click on yours: I can only assume that you are meant to have as many people praying for your lovely family as possible. And I am. I've read through Presley's story and through several of your posts and my heart goes out to you. The post titled "Spent" was heartwrenching...as the mother of a 4 month old baby girl, I can't not imagine the pain you must be going through. I promise to continue to pray not only for Presley, but for all of your perfect family.
With love,
Rachael (praying for you in Austin, TX)
"Presley" "heart" and "great"...3 of the best words I've heard together in a long, long time. I'm so, so, so happy to hear this. Give her a kiss from Aunt Kristy!!
Wow Kele, she sounds like she is doing great! What a little toughie Presley is. I am heading to Denver tomorrow for the Dem convention (and yes, all babies will get the requisite political paraphernalia that you love that I buy for them, including a onesie for Presley!!!) so won't be able to check your blog much for the next week. Please give Presley kisses everyday and tell her Aunt Kim loves her madly and will keep praying a more times than I do anything else every day. Love you!!
Kimberly
kele,
I wish you luck for the extubation. Hopefully presley will breathe on her soon, and then, you`ll see, you will be at home sooooo soon and just enjoy your little sweetheart. Thinking of you and sending you strength,
Claudia
So glad Presley is fluttering along! :) Coming off some of the medications and IV's...all good, good, good!! We will be praying specifically for the timing of the extubation and that she will not need the breathing support ever again! We will all sigh a relief with you, through lumps in our throat, when you post she is off of the ventilator and soaring!!
Cheering for Presley!!
Cheri
I am so glad to hear that she is doing great!!! She is so strong! I am sure she will do fine coming off the ventilator too. hugs to you all!
Kele-
I am so happy that this procedure is behind you. Now you can look ahead to going home. I think of you often and your little girl. She is so lucky to have a Mom like you. I am so impressed by your honesty and openness through all of this. I know it must help you to stay so strong. I feel honored to have been a part of your life and for you to share these intimate thoughts and feelings. I will continue to keep your family and especially Presley in my prayers. Hug your family for me.
Aloha-Carole
Praise God that she came through surgery and the cardiologist is pleased with how all that turned out. Continued prayers being offered up for a full recovery!
I love it when they start pulling lines left and right. That is a REALLY good thing!!
I check your blog often, though I don't comment a whole lot.
She sounds like she is doing well.
Sending lots of hugs and prayers from Rhett and I!!
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