Presley&T21

FYI...

2008-09-20T04:54:00.012-05:00

I am not sure if all of you noticed that I really dedicated this blog solely to Presley's medical updates. Now that she is home, I plan to put all of her updates on our family blog. I thought this was worth mentioning as I know this is the blog many have on their blog roll.
So, where as your welcome to revisit Presley's journey here, as often as you like, please know for regular and current updates on her medically, and/or otherwise, you will want to visit our family blog and add that link to your blog roll instead!
Look forward to seeing you there!!!

What were we thinkin?!?!

2008-09-13T09:48:00.004-05:00

First off, thank you all so much for checking in...

A glimpse of the last 6 months...

2008-09-05T20:39:00.005-05:00

Sweet Presley...our little butterfly, you make us so proud. I look forward to making future videos, that have pictures with a lot less needles and tubes and many more smiles and laughs.

Make photo slide shows at www.OneTrueMedia.com

I have time to share atleast one picture...

2008-09-03T09:48:00.006-05:00

A little too busy to write much. Adjusting to having THREE kiddos at home, that is not a complaint, I promise. Thank you all so much for the lovely comments and emails!!!
We had a great 1st day, Mikah and Jett love their Presley and want to kiss her constantly!
She had a wonderful night in her bed, next to mommy and daddy's. She slept well and woke up after Mikah and Jett. Yippee, another good sleeper!! It was AMAZING to wake up this morning and have her here.
I have waited forever so see her smile and she has given us several the last week however she has smiled SO MUCH since being home. Mikah was singing and dancing for her this morning and she loved it....Can't you tell!!!

10:00 a.m....

2008-09-02T10:00:00.001-05:00

Presley is coming home

2008-09-01T12:05:00.004-05:00

Presley comes home tomorrow! YES, YES! I feel like there should be a parade or something!! I can hardly believe that this part of our journey will finally come to an end. However, it can't end without my expressing something very sincerely.

"I have learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
Maya Angelou

When I read this quote the other day it spoke to my heart! Mike and I can't even begin to thank all the people we need to thank. Our families, our amazing families, our friends, old and new. And every one of you out there, that said a prayer for our butterfly, who sent Mike or I a text, a message, an email, a blog comment, card, a gesture of any kind... know, KNOW, that Mike and I will never forget how you made us feel. We felt so embraced through this whole ordeal and we can not thank you enough! The only thing we know to do to show our gratitude, is to pay it forward. And we will, we promise. We will.

Much love and gratitude,
Kele

I am not quiet as dramatic today

2008-08-31T15:06:00.014-05:00

Arg, I feel like I need an uplifting post after the last one. I appreciate you guys bearing with me in the times when I may seem a bit on the dramatic side.
Presley has had a good two days. The eye crossing has diminished considerably, so, I am guessing that it is about withdrawls or perhaps her adjusting.
I feel much better about her oxygenation, as the pulmnologist that I had requested come by and assess her, said she looks incredible! He said he studied her chart and when he read all she has been through, he didn't feel like she matched what he had read. He said he is amazed by how well she is doing and how well she looked. I really liked him and he was very funny, when I told him I was an R.T. he laughed and said, 'Oh Lord, that's why you want her off the O2 so badly, just get over yourself, give her the little bit she needs and quit obsessing about it, it will only be for a little while!' Isn't that funny? I love how candid he was and he made me feel much better.
So, on another note, this morning, as I am once again rushing out the door to get to the hospital, I back my suburban into Mike's car! Afterwards, I go into the house and ask for him to come outside. He hates it when I do this, yeah, this is the THIRD time I have done it!!
Mike tends to be of the mind set, that if I am going to crash into another car, I should crash into someone else's car, rather than screw up both of ours...LOL!
Anyhoo, after he comes out and looks at it, sees that I am upset, he just gives me a big bear hug, yup, a hug!
THEN, it gets even better, then he says, 'it is just a stupid car'. Yeah, can you believe it? A man, my man at that, said 'it is just a stupid car.'
Imagine that... I guess Presley is helping all of us put things into their true perspective?!?!

Absolute shame

2008-08-30T03:17:00.005-05:00

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.

Here's the proof I promised!

2008-08-26T19:46:00.012-05:00

Okay, these were Pres' medication pumps one week ago...

and this is Pres' medication pump, that is right, PUMP, today. She is only on ONE medication, ONE!!!
And this was my butterfly one week ago...
And this is my butterfly today...
Now, c'mon guys, you don't think I'd stop at just one picture do ya?

I think this is one post that less is more, these pictures say way more than I ever could!!
BIGhugs!

A teaser regarding Pres

2008-08-26T14:54:00.005-05:00

OMG! Presley is doing so well today! I know I am mean to not post a picture for you guys but I am still at the hospital and can't do so until tonight. But jeez, she is doing A. MAZ. ING!!! I promise to post the proof tonight!

Presley was extubated!

2008-08-24T18:02:00.006-05:00

Yes, our little angel was extubated Saturday, at 2:00 in the afternoon. I didn't post about it that day because she struggled a bit afterward. I couldn't get over how hard she was pulling for each breath. However, a little over 24 hours later, as I sit at her bedside, while she naps, I am happy to report she is doing better. She still has some lung complications but we are slowly working through them.
I was hoping she would be home by weeks end but I need to accept, it may be a bit longer. Ugh, it is getting so hard. My friend Heather and I just discussed this this morning. You would think I would be so happy because the end of this ordeal is almost here, but it seems like I have never been more anxious and more tired, than I am right now. And this morning, Mikah climbed in bed with me and the first thing she said was "Mommy, don't go bye bye today" My heart broke! And followed by the heart breaking... Mommy went bye bye!
I held Presley for the first time today in over 2 weeks. It was wonderful! However, I spent most of the time just praying over her. Praying that God would let her get better and come home!
Not much else, I am drained and exhausted and heading home to watch a movie with my sweet Mikah and kiss all over my Jett!
Thanks again for your prayers!

Video of Presley

2008-08-22T15:00:00.007-05:00

I didn't know if I would post this video. I don't know why I am so reluctant to show Presley to the world when she is like this. I guess it just seems so personal.
Never the less, I thought she looked so alert today that it excited me. So, I thought some of you, who have been diligently checking on her, would like to see it too.
The dichotomy of the weaning process is brutal. We want to lift her sedation so she will breath well on her own and get her off the ventilator but, lifting her sedation means she has to be awake and fully aware of the breathing tube down her nose and throat, as well as tie her down!!! She wiggles and squirms and looks around like 'What's the frickin' deal here?!' You can see her dart her eyes side to side, just not knowing what the heck is going on?!
I know if I had to be like that I would want to be knocked out cold!
My poor butterfly, she is such a patient and strong Lil lovely, isn't she?
She is doing better. The doctor has been weaning her ventilator today and she is handling it all very well. I am hoping everyone will send a prayer that we get her extubated (off the ventilator) by Sunday. That is mommas specific prayer anyway!!

The wink

2008-08-21T15:00:00.007-05:00

I think seeing the light at the end of this tunnel has just made me a bit nostalgic. Yesterday Mike and I were in the hospital cafeteria eating lunch and we found ourselves reminiscing about the past 6 months.
You know, when the surgeon came out after Presley's surgery on Monday, I was in true dork fashion when he left, and I made Mike give me a high five! The culmination of it all had just made me so giddy.
Because, along with all the pain and anguish of the last 6 months, there is also so much that I am proud of, and happy about. First and foremost, I think of Presley and all that she has endured and pulled through. I am so proud to be her mommy, she is my hero!
However, I also can't help but think about Mike and I. I think of all the internal shifts and changes within us, that go along with all the external happenings of the last 6 months. Even though we were both completely unaware just how hard these last several months would be, Mike reassured me early on, that it would all be okay...
On the morning of the day that Pres was born, Mike and I were still unaware of the results from the test performed, to see if Presley would have Down syndrome. It had been one week of waiting.
I don't think I could ever articulate accurately what that week of waiting was like. I prayed, I cried, and I felt like I was living someone else's life. All I can say is, it was dark. No matter what time of day, it was dark.
About 3 hours after my arrival to the hospital, on the day Pres was to be born, my OB, Dr. B, finally came into the room. Mike was about 10 feet from me, leaning against the sink. Dr. B was at my side, on a stool. He held my hand and looking at me, then to Mike, slowly and a bit hesitantly, he said 'Well, the results of the amnio came back and it does look as if she has Down syndrome'. I remember looking at Mike, I don't know if it was because time stood still, but I will never, in all of my days, forget what he did, he looked at me, with a half smile on his face, and he winked.
I don't remember much after that. I don't know what else Dr. B said, I don't recall if Mike and I hugged when he left, I don't remember crying with him. I know we did both, we hugged and we cried. But I just don't remember it specifically. But I do remember the wink. I can still see that wink. I think because in that moment, I felt like my world was crashing. In that moment, I felt like I was getting the worst news I have ever heard in my life, but from across the room, the man in my life, was telling me that that it was going to be okay, that we were going to be okay.And we have been.
Goodness, we have come so far. Not only do Mike and I embrace our little lovely and all that she entails. We also accept the realities of what goes with it all. We understand that if people don't know our little angel, to them she is Down syndrome, that is what they see, a seemingly sad diagnosis and the medical issues that go with it. They don't see Presley.
But in the beginning, I also struggled with this perception and I am her mother. So I can't expect more from others. I understand this now and I am okay with it. Mike and I realize and accept, that people who don't have a child with special needs, more specifically, a child with Down syndrome, will never really understand it when we say we feel so very blessed.
Everyone has there own personal journey. Where as, I learned long ago to never look at another's life with envy, because you never truly know what their journey is about, it has taken the presence of Presley, for me to realize the flip side of that. To never look at a person's life and feel badly for them, because again, you aren't walking their path to know the beauty of their story, their whole story.
Mike and I have a story. I think it is a beautiful story, but it is real.
Which means it has good chapters and bad chapters. But what is consistent throughout, is that we are in it together. I feel very blessed to have Mike in my life. A man, that in the midst of his own devastation, felt compelled to send me a sign of reassurance. He told me with that wink, and many times since, that, 'we can do this'... we. can. do. this.
We can, and we are!

So, to the man behind the wink, 'High five, thumbs up, V for victory, double high five and all the other dorky stuff that comes from this goof ball wife of yours! I am proud of us and iloveyou.'

Little to report on Miss Presley

2008-08-21T13:11:00.001-05:00

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!

Update on Presley, 1st day post op...

2008-08-19T11:06:00.008-05:00

Presley is still pretty well sedated today. No change in status. She is stable and is doing well, and we praise God for that!
My friend Heather warned me that she would be very swollen today. I should know this stuff but all of my medical knowledge goes out the window when it is my child. I appreciated the heads up because she was so very swollen when we got here this morning. Ugh, this is hard to see.
I usually take the pictures in our household but Mike has been in charge of the camera on this one.
Actually, I admit that I don't have as many pictures of Presley as one might think. I have always despised seeing the evidence in each photograph that confirmed how sick she was. Understandably, I can't stand to see the I.V.'s and tubes in her. As the weeks and months have progressed, I have seen her swollen, tired, ashen, restless and have felt helpless through it all. I know people still take tons of pictures of their child even during times like these but it has always been difficult for me. I just want so badly for it all to go away and to never think of this time again. However, I realize that this is not my choice really. This is Presley's life and as her mother I should record her journey. Perhaps one day she will want to know every detail, I have to imagine that she will. And despite the fact that I am a mommy who longs to be past the heart ache of seeing my child going through so much, I do want to remind my sweet girl all that she has had to endure to be here with us. I want her to forever know how strong and special she is. Having said all this, I very reluctantly post this picture of her immediately post op yesterday. It is so unbelievably difficult to see my sweet child like this and even harder to solidify it forever with a photograph, but I have. I am holding off on posting any of today, they are much more difficult to see, until I have happy ones to go along with it!
This amazing child is such an inspiration to our family. She is so strong and so precious and as mad as I get with God at times for putting her through this, I can't help but praise Him when I look at her. What did I ever do in my life to deserve something so magnificent!? I shall never know but I am surely thankful.
Thanks for the continued messages and comments of support. We are so very grateful of the kindness we have been shown.

Wonderful news about our butterfly...

2008-08-18T13:39:00.007-05:00

Goodness, Mike and I are overwhelmed by the emails, texts and comments we are receiving. Each of you doing so, PLEASE know that the two minutes it took for you to send words of encouragement have helped us beyond what I can explain in a post. We feel so embraced, thank you.

After hours on a table, before an earthly man who performs miracles, Presley is now done with surgery. That is right, she has a 'band aid' by her name as I write.
The surgeon just came out and said that all went very, very well. Her valve was pretty compromised but he did what was needed and the operating room echo showed a perfect repair.
So now that the earthly miracle worker has done his job, we continue to let the real miracle worker, the great physician above, continue to hold her closely. I am sure He has felt inundated with requests from below in regards to this little girl. Mike and I can't thank you all enough for that.
I must go for now, I have a Lil' angel awaiting 10 dozen kisses.
Much love and thanks sweet friends of Presley, I will post more tomorrow.

1st update on our butterfly...

2008-08-18T09:43:00.008-05:00

First and foremost, Mike and I want to thank those of you who have been so kind as to send a gesture this morning. We have received many, many emails, texts, messages and comments on the blog, letting us know that you are thinking of us. I can not express in words what this means, thank you, truly.

This morning when we arrived at the hospital at 6:30, the doctor informed us that Presley had some issues over night. She had a temp of a 100, then in the attempts to cool her down, her temp dropped as low as 94, followed by a blood pressure and heart rate drop. Labs were drawn, medications were stopped while others were started, all in the attempts to stabilize her.
She was stable upon our arrival, as well as wide awake. The doctor said that the heart surgeon would be made aware of these happenings and may decide to push her surgery back. Mike and I waited at her bedside, in disbelief, to hear the final word.
As I looked at her, tube down her mouth, endlessly tonguing it, trying to get it out and struggling to move, but unable to due to her arms being tied down, I agonized over the idea of having to see her like this even one more day!
Thankfully, the surgery is 'a go'.
Mike and I are in the O.R. waiting room staring at this flat screen that has all of the names (in code) of patients in the O.R. There are one of three symbols by each name. The first one is the symbol of a 'knife', YES, a knife. Which means the patient is being operated on.
The second symbol is of 'little stitches', this indicates the procedure is closing and the third symbol is a 'band aid', meaning the procedure is done.
The anesthesiologist did say beforehand that it would take some time to get all her lines in, hooked up on monitors and on the ventilator, before the procedure would start.
So, Mike and I sit in the O.R. for a good hour, staring at the flat screen, waiting for the knife symbol to be by our daughters name.
Seriously, they need to rethink that symbol.
10:00 was when it appeared. Shortly followed by the surgeons nurse coming into the waiting room to confirm that he is now opening her up and starting surgery.
So far, all is well. Not much else to tell. She will come back out in an hour or so.
Thanks so very much for your thoughts and prayers, we will keep you posted.

Presley's in surgery...

2008-08-18T08:40:00.004-05:00

Our sweet baby was rolled away from us this morning at 8:15, down a hallway and through double doors awaits her new lease on life, and a ticket home. The time of her surgery changed on us late in the day yesterday. Please keep her in your prayers and we will keep you updated.

Spent...

2008-08-16T00:39:00.005-05:00

Yesterday I posted that Presley had a cardiac catherization done on Thursday. I didn't elaborate on the fact that she was intubated (still on a ventilator) after the procedure because our hope was to get her extubated (off the ventilator) the following morning.
Her cardiologist intentionally kept her intubated so that he could keep her sedated over night, as to not move the leg he manipulated during her cardiac cath.
Yesterday, I went to the hospital in the hopes that she would have an uneventful extubation. This was not to be. When they went to extubate her, I stepped out of the room. When what should of only taken a few minutes dragged out a bit longer, I peeked in to see what was going on. Presley was not doing well. She got so angry when they started messing with her and threw, 'a Presley', as I now refer to her tantrums. The thing with these tantrums is, Pres just doesn't have the reserve or energy to support them. Therefore, she gets in major distress and turns blue and gets into very serious trouble.
Long to short, she was reintubated. The powers at be have decided to keep her on the ventilator until her surgery Monday morning.
That is the medical side of it. The emotional side of it?...
Well, for the very first time today I saw defeat in my daughters eyes. I can't explain it. She was so swollen, she was so red, her body seemed to shake and her eyes were completely bloodshot. She lay there looking at me in complete despair. She could barely muster the energy to open those eyes and look at me, but she did. I know she was trying to communicate with me. I know she was asking me "How much more mommy? How much more?"
I can't articulate the pain I feel today. The doubt I feel. That look in Presley's eyes made me question everything. What if none of this goes the way it is supposed to? What if they can't help her? How in the world can one surgery make all this go away? It just seems too impossible, too unbelievable. It seems too good to be true.
I keep telling myself to stop, I scream inside my head...'STOP!' I hate the idea that I could manifest bad things with these thoughts. But it is as if someone else is inside me and I can't make them go away. I can't pray right now. I just can't. I mean I say the words... 'Lord, I beg you to take care of my daughter' But I just can't find my faith. I keep questioning and doubting. And mostly, I wonder... what if my hope and prayer, isn't His will?
What if my will, isn't His will?
And I ask Him, just as Presley asks me, 'How much more??' Seriously, how much more?
I know there have been times in my life when I say to someone 'Oh, I will say a prayer for you' and to be honest, it doesn't go much further than that. I get busy or feel overcome by my own issues and never send that prayer upward. We all do this. But please, even if it is just for a brief moment after reading this post, please say a prayer for this sweet child. Pray she doesn't lose her fight, pray that the Lord heal my sweet daughter. I don't want to see that look in her eyes again. I don't want any mommy to see that look in their child's eyes. It is utterly heartbreaking.
Again, thank you. Thank you for the prayers and for stopping by to check in on my girl.

Presley's surgery is scheduled!!

2008-08-15T09:01:00.004-05:00

FINALLY... I can hardly believe it!! Presley's heart surgery is scheduled for this Monday, the 18Th at 10:00. She had a cardiac catherization done last night, a procedure to measure her cardiac pressures and allow for a scope to take pictures of the valve. This is to gather more info for the surgeon as well as get an idea of what to expect with her post op recovery. The cardiologist did say that he did view much lung disease, expected since she is a preemie. He said this just means is that it will take her more time to get off the ventilator post op. All I will say to that is 'show 'em again Presley!!'
Presley's 6 month birthday is the following day after her surgery. Can you think of a better birthday present than to have a perfect heart repair, a quick recovery and a chance to finally be home with her family? That is what I am praying for. And once again, this is what I would ask of you.
Please pray for this little girl who has more endured more the first 6 months of her life than many endure in a lifetime!!
Pray for the surgeon who will hold our daughter's heart in his hands and all the others who will care for her during this important time.
And maybe throw a pray His way for mommy and daddy, who will be pacing the floor in the waiting room!
I am sure I will post something while she is in the O.R. They will be updating us throughout the surgery and I will pass on the information to you guys. As well as some sappy mommy stuff I am sure. Sorry, they go hand and hand these days and I am certain to be brimming with emotions that day!!

This. is. not. home.

2008-08-09T05:29:00.008-05:00

These are words I have whispered to Presley pretty much every day the last month or so.
She turns 6 months old on the 19Th. Can you believe it? I can believe it because I'm livin' it! LOL
I know that this is all that she has known in this short life of hers. And she has certainly been blessed to have some wonderful and lovely nurses that have cared for her.
But I have taken a liken to whispering this to her every day...
This. is. not. home.
No, my Lil' butterfly, home isn't about surgeries and needles, medicine and stitches, oxygen and tubes...
It is about chasing bubbles in the back yard, Popsicles and Dum-Dums. It's playing dress up with sister and being terrorized by brother. It is kisses and tickles and baths with lots of bubbles. It's a big furry guy named Gus who will be patient while you explore him. It is long walks with Popi and being rocked by Nana. It is hide and seek and staying in our pajama's all day. It's hoping for touchdowns and fieldgoals and screaming for daddy when he walks through the door. It is about the sand box we turn into a slop box with water from the hose. We dance and we sing in this magic place you'll call home. We are waiting for you Presley Ann, so don't get too comfy where your at, because
It. is. not. home.

Out of surgery & doing well

2008-08-07T21:01:00.005-05:00

Again, short & sweet... Presley had her g-tube surgery today. And again, as with the anesthesiologists from her previous two surgeries, Mike and I get the whole conversation from today's anesthesiologist about how, due to her shunt, her heart defect and all the strain that it puts on her little body, that it all makes her a very difficult patient to sedate and ventilate during an operation. Therefore, we should prepare for her to be intubated, (on the ventilator) for a few hours post op. Well, again, as the previous two surgeries, she comes back from the operating room... EXTUBATED (off the ventilator)!
So I can happily say our baby girl is doing fine, thank you all for asking.
And when, oh when, will these doctors realize what a little fighter this girl is?!?!?

Good news...

2008-08-05T17:32:00.003-05:00

Short & sweet...
The care plan meeting scheduled today wasn't needed after all! All the doctors and surgeons managed to plan some things and mommy is cool with all of it!
Presley is scheduled to have her g-tube placement on Thursday at 11:30. (Heather, this next part is expecially for you cuz no one else will probably understand... g-tube, MINUS the NISSEN!!! Yippee!)
Furthermore, Presley's antibiotics finish next Tuesday and her cardiologist feels pretty sure the surgeon will want to schedule her heart surgery 7 to 10 days beyond that.
So, do you guys get what I'm sayin'?!?!
We're nearin' the end, oh Praise God, we are nearin' the end!!
Prayers for my girl on Thursday and as always, thank you!!

Finally a post about Presley

2008-08-02T01:18:00.010-05:00

My apologies for taking so long to post on Presley. It has been a very turbulent few weeks. I know I have mentioned before that Presley has a team of doctors. I understand that this is how it all works, however, at times, too many is too much! Not to mention their is a revolving team of PICU pediatricians and I meet a new one each week. I get to explain the latest and then get to hear his or hers idea's or new take on it all!! Grrr.
However, with the key doctors/surgeons there has been a slight controversy as to have Presley's heart surgery first or her g-tube placement first. There are pros and cons to both and there seems to be a dividing camp on the issue. Therefore, a much needed care plan meeting has been scheduled for Tuesday. Key players, doctors, surgeons and mommy, oh you bet mommy, will be there. I don't know what will be decided that day but I do know something will be decided that day!! And any future introductions I have with incoming doctors will sound much like this... "Hello, my name is Kele, don't screw up the plan!!"
Tuesday is also one week away from the end of her antibiotics, so we are getting closer.
Now, as for Pres herself. Gosh, I tear up just broaching this part... I so love that girl!!
I have seen her temperament change a bit. In the first 4 1/2 months of her life she was such a sweet natured, passive baby. I remember being concerned about it and always asking the nurse if she cried that day. Sometimes she wouldn't even cry when they stuck her heel with a needle! It worried me. Now? worry gone!! We can hit a full throttle mad in less than 3 seconds!!! Some days, all you have to do is readjust her nasal prongs and she just gets raging mad. I hate it but I also think it is kinda cute. I tell the nurses, 'Well it took her long enough!' That girl is sick and tired of being sick and tired. Can you blame her?
She is a little lovely though. Everyone adores her and they still call the tape recorder of Mikah and I talking to her magic. They say when I am not there she just calms right down when they turn it on.
And my kisses always work, seriously, I have never met a baby that wants to be kissed so much. She loves it, she could have me kiss her a zillion times, it is so funny. The nurse can be doing something to her that makes her mad, on one side of the bed and as long as I am on the other side, just kissing her lips over and over, she calms right down. Isn't that the silliest?
Well, I think that is a sweet vision to end on, me kissing my baby.
So I will post something in regards to 'the plan' Tuesday evening.
Thank you all for caring!

The latest on lovely Presley...

2008-07-22T21:41:00.008-05:00

I haven't taken many pics of Presley lately because she has been on cpap all week. The cpap is positive pressure through prongs in her nose and requires this silly head gear to keep it in place. Of course, I hate seeing all this on her but I can't deny how helpful it has been for her. Her oxygen requirement has decreased dramatically and she is breathing so much easier with the cpap's help. Her baseline respirations used to be 80 bpm, now she is breathing about 40-50 bpm, HUGE difference. She isn't nearly as tired, obviously.
But I hate that I can't 'pretty her up' so to speak. No hair bows, no pretty clothes...geez. My sweet butterfly...when she gets all this stuff off and all these tubes out, I am going to dress my girl up to look like the doll baby she is!!!
We have 3 more weeks to go on the antibiotics and we are still in the 'discussion' phase regarding her g-tube. There has been a lot going on in the decision making area. I have just been praying for the Lord to help Mike and I know the right choices to make for Presley. I know He will guide us in this regard.
Thank you all for the comments and emails concerning my recent post 'Spiritual confusion'. It was all so helpful and I was very touched by how many of you contacted me with your concern and insight. I shared all of the comments and emails with Mike and the both of us have found such a new sense of peace with it all now. So, thank you, truly.
I am praying specifically and I am praying that 'His will be done'. I am praying for strength and acceptance as well as proclaiming and praising. Most importantly, I am praying, all day, every day. And even more important than that, He is listening.

Spiritual confusion...

2008-07-19T03:18:00.009-05:00

I am very pleased that many of the people in my life, or who have come into my life as of late, seem to be very spiritual and wise people. Many have commented on my blog and even more have emailed me personally. I am always thrilled to hear from anyone in either way.
Having said that, I will try to explain my spiritual confusion, in the hopes that I offend no one.
Years ago someone said to me, that the way a person views God, is often times much the way they view their earthly father. I always found that to be interesting. Where as, most people I know believe in one God, I think it is safe to say no two people truly perceive God in the same way. I would imagine that would be impossible, as every individual is different. Regardless of what we were each taught about the Lord, we are who we are, just as we think the way we think, largely because of our experiences in childhood. Often I have read scripture or heard in sermons about fearing God. I have never really feared 'my' God. Just as I never feared my earthly father. Don't get me wrong, growing up it never served me well to anger my father. However, if you don't count the years of my adolescent shenanigans, I have always viewed my father as very patient and kind. Certainly not a man to fear. And certainly a man to whom my best was always good enough.
I have no doubt that the Lord, as I view Him, doesn't expect me to do it all 'right' and that going to Him in prayer, in any way, pleases Him. He is loving and forgiving and kind. However, there are a few things as of late that I want so badly to be specific about in prayer. Such as, Presley's condition not worsening while she awaits her surgery as well as the valve in her heart to heal and be viable for surgery. But as I contemplate this for prayer, something very heavy has weighed upon me. If everything is God's will, if He already knows the outcome, if He has His plan in place...then why pray? I am not trying to be even the slightest bit cynical or sarcastic here. It is truly a spiritual dilemma I have had within myself. Why pray, or how should I pray? If God already knows His plan and knows Presley's outcome then is there hope for a specific prayer to be answered?
I hope I don't sound too dramatic. I never thought there would be a day when I questioned if I were praying the right way. But I also never thought my prayers would ever hold the magnitude in which they hold today. I wish my prayers still just consisted of 'taking the right job' or 'buying the right house', geez, those were the days...

Mommy's frazzled but restored...

2008-07-17T17:17:00.006-05:00

Presley was transferred back to the PICU Tuesday night. Presley needs more than a 4 to 1 (patient to nurse) ratio and she just wasn't safe on the floor. I expressed my concern and thank God, after a bit of back and forth, the doctors finally concurred and she was transferred at 9:00 p.m. on Tuesday.
I wish I could post all that is going on right now with her. However, it is just so complex and so exhausting for me to rehash that I know you will all forgive me if I don't. Just know, she is fine, she is tired, she is being taken care of and most importantly she still needs your prayers. I will say that her g-tube placement is on hold for a bit until we get her stable. When I find the strength to write more about it all, I will.

The last 4 days Jett has had a 102-104 degree fevers. As I sat with him yesterday morning, before heading to the hospital, I saw a commercial, it was some Ditech commercial. The commercial shows this big dog, laying in a comfy king sized bed with crisp white sheets, sound asleep. I just started crying when it came on. Mike comes over to ask what is wrong and I say 'This is just all too much!' The thought that entered my mind when I saw that damn dog was 'I wish my life was that easy!' Can you believe?
Later at the hospital as I visit with Presley, I excuse myself several times to go into the bathroom. I know the nurse must have thought I had a bladder infection. But for some reason I just couldn't contain myself. I kept feeling this wave come over me and I would have to go to the bathroom and just sob uncontrollably. Usually I don't mind crying a bit in front of the nurses, it isn't as if they haven't seen a mommy cry. However, yesterday my cries were so fierce that I didn't want anyone to see me.
So, those of you that have emailed and left messages asking how I am holding up? There you have it. I am now envious of a dogs life and spend a bit more time on the latrine, and not necessarily to pee!

My saving grace yesterday? A lovely person that I have met in the blogging world, Heather. Her sweet Zoey had the same heart repair last August that Presley will have this August. Zoey was 5 1/2 months old at the time of her surgery, just as Presley will be. Heather and I have emailed, she has commented on the blog and at one point she left me her phone number. Yesterday morning I was so frazzled I actually called her. She was amazing. She sent me an email later in the day. She helped restored my hope as well as my faith. I wanted to share her words here for my family and close friends, who are enduring the worry as well, perhaps you guys might find some peace in her words as I did...

"I have thought so much about you today and so wished I lived near by so I could give you a hug and tell you that you will get through this. Presley will get through this. She is tired. She was born tired. Her heart is working over time and more, but she is so much stronger than you or I could ever imagine. I hope no matter what time it may be, that you will call again if you need to. I understand every step you are walking. Truly I do. And as you walk and find yourself weary, it is ok to say, I can't do this. This is too hard. I am angry. I am scared. I need help. It is in those moments that those who love you will carry you. God will carry you. Even when you doubt Him. Especially when you doubt Him. You may fall momentarily and then you will rally once again. For Presley. You are doing a great job Kele. It doesn't need to be perfect. Perfect is impossible right now. Perfect is impossible always. Except in Presley's case. She is perfect. She just needs that little tweaking of her heart and you will see. One of the things we noticed immediately after Zoey's surgery, even before extubation,was her eyes. They had light. They twinkled. I long for you to see that light in Presley's eyes. Until you see that light, my prayer for you is just peace in each moment. One moment at a time, Kele. That's all you can do. I pray for Presley multiple times a day. I will continue that today, tomorrow and every day after until Presley is safely through surgery and home in your arms where she is meant to be. Until next time, Heather"

Pics of Pres...

2008-07-14T13:05:00.004-05:00

Update on Presley!

2008-07-13T17:24:00.005-05:00

As mentioned in my last post, Presley transferred to the pediatric floor last Saturday. On Tuesday she had a major desaturation in oxygenation. I mean major! She quit breathing momentarily, turned blue, and after a 'code blue' was called, followed by much mayhem and about 25 more people than necessary entering her room, she recovered. I was present at the time and I thank God that I was. It was the absolute worst 5 minutes of my entire life but I will always thank the dear Lord for allowing me to be there for my daughter. They transferred her back to the PICU to run some tests and monitor her for 48 hours. After tests were performed and by process of elimination, they are going with the assumption that reflux caused her apnea (cessation of breathing), which of course caused her oxygen level to plummet. Enough of the medical mumbo jumbo. Long to short... they have talked me in to a g-tube for her, this will be a tube inserted into her stomach for feeding. I have been very reluctant to this. You guys have to realize, I work the adult side of the medical field, and on that side, a g-tube is usually the beginning of the end. It represents very ill and very sick people. Even though, logically, I know this isn't what a g-tube means for babies, it is still a hard thing for me to accept. Luckily, Presley has some amazing doctors and the Lord sent just the right one, Dr. M, to sit in front of me, about 2 inches from my face, and say "This does not change your daughters out come. Nothing about a g-tube means she isn't going to recover just the same, go home, be happy, laugh and roll around on the floor with your other children. She will grow out of the reflux and we will pull it, done!" That is exactly what this sweet man said to me and I made a point to tell him the next day that it was his words that helped me to embrace the idea. Now I see it as a positive, I can be assured she is safe, we can bring her home even sooner post op because we won't be waiting around for her to learn to nipple and on the selfish side, she won't wake up in the middle of the night to be fed. LOL! They should do the procedure on Presley in the next week or so, I will keep you guys posted.
Presley went back to the pediatric floor on Thursday after her two day stay in PICU. We are settled in again and are getting therapy every day and doing well. Presley did have a difficult day today. She struggled with her oxygen level as well as her work of breathing. Her little heart is working so hard and I pray this next month wont be too difficult for her little body to bear while awaiting her surgery. Please keep that in your prayers.
This little Angel is so beautiful. I am sure it is because I am madly in love with her but never the less, I think she is the most beautiful child in the world. I kiss her sweet face all day, over and over and over. When I am done and I pull away, she has this crooked little smile on her face and I swear to you, her eyes are saying 'more mommy, more.' And she gets just that....more kisses, I love her so very much. I could never love one of my children more than the other but I love them all very differently. And certainly, my love for Presley is different. My heart hurts so deeply for what she has had to endure and for not being able to take her pain away. It tickles me when Mikah hurts something, she absolutely has to have me kiss it and magically the pain goes away for her. I wish I could kiss all of Presley's pain away. The fact that I can't takes me to that very different love that I speak of. It is a love somewhat fueled by heartache, it is the only way I know how to describe it. I try to have faith in the day when she will be healthy and the only pains left for her will be the ones that are magically healed by mommy's kiss. However, days like today test that faith.
A great friend of Mikes, Zach, sent him a text the day of her last procedure and assured him she would be fine...he said "She's a Giles!" Yes, she is! A Giles with some Devlin/Desalvo blood running through her and that makes up some pretty tough stuff! Not to mention, she has the hands of God upon her and the prayers of some wonderful people...so, to all you wonderful people, thank you and please keep praying for our butterfly.

The latest on Presley's surgery...

2008-07-07T02:02:00.003-05:00

Well, we have the latest on Presley's surgery. As I said in the previous update, a change in the heart valve that is in need of repair was the reason for postponing. However, cultures are not indicating an infection but the cardiologists feel that there definitely was one and treatment must be administered. This treatment is 4 to 6 weeks of antibiotics. It is the hopes that this treatment will resolve this change on her valve, making it viable to stitch on for her surgery. Please pray that this happens. So, yes, this means a likely hospital stay for another 2 months. We could go home but there would be some home-health care involved in that transition as well as a g-tube or some form of feeding tube. There are also some insurance/financial issues that have to be considered but I won't bore you with those details. So at this point it looks as if we will be staying put at the hospital.
Presley was moved out of the PICU and onto a pediatric floor on Saturday. She has already had several occupational therapy visits and starts physical therapy on Monday. We are working on her nippling in the hopes that she won't create an aversion to this process and can be successful at taking the bottle post op, if not sooner.
There has been so much going on in the last few days but it has been glorious to be with her so much. I just love it and I know she loves having mommy around all day. I feel it is imperative that I am there most of the day as she is getting so much therapy and I want to learn all that I can. It is going to be very difficult balancing home and hospital for this long but we are just trying to focused on the pay off, a healthy little girl to bring home and finally be a family.
Mike brought the kids up to the hospital yesterday and as Mikah and Jett were running around the room and excited by seeing Presley, Mike said "Do you realize this is the first time our entire family has been together?" It was a special moment, and a short moment at that as Jett starting pulling on hospital equipment, LOL!
Mikah and Jett loved seeing Pres and I could tell Presley didn't know what to think of the mayhem....'get used to it little girly'!
Thank you all for caring and please keep our family in your prayers as this will be a difficult time for all of us. But most importantly, please continue to pray for our precious Pres, please.

Presley meets her big sister Mikah!!!

2008-07-05T21:59:00.007-05:00

Click here to watch video!

Presley transfers to the heart hospital

2008-07-03T22:43:00.009-05:00

Change in plans for Presley...

2008-07-02T01:19:00.009-05:00

Presley was scheduled for surgery today. She was transferred to the heart hospital on Monday with that being the plan. However, Tuesday, after doing an echo of her heart on the day of arrival, altered the plans drastically. Apparently, there has been a significant change to the valve in her heart that needs repair. It looks as if there could be, or has been, an infection to that valve. Regardless of the 'could be' or 'has been', the surgeon, her cardiologist and her pediatrician, have all decided to run a 4 to 6 week course of antibiotics before operating. Initially, I was devastated to hear this news. I mean, absolutely. In fact, for a moment her wonderful pediatrician Dr. D, had to stop being Pres' pediatrician and play the role of mommy's psychiatrist. He did it well and I am now in love with the man!
However, having all the information and after talking to all the doctor's, which by the way, Presley has a 'team' of, Mike and I know it is for the best and are at peace with it.
We are unsure if she will wait the 4-6 weeks out at the heart hospital or perhaps something more suited for a long term stay. We will keep you all posted.
I don't know how Mike and I are doing it, by the Grace of God I am sure, but through all of this we still seem to feel so very blessed. We are very pleased with her doctors. They are 'world class' and have all made us feel like Presley is their only concern. I know this is not the case but that is how each of them have made us feel. Her surgeon, Dr. Miracle-worker, literally spent over an hour with us last night, explaining every detail of her surgery. Mike loved that ~ while I loved the fact that the guy was pretty easy on the eyes!
Presley herself is doing amazing! She is so alert and awake. She has her own room at the heart hospital, so our visits are much more comfortable and enjoyable. She had such a wonderful last few days. She received a visit from both her Aunt Kristy and her Aunt Kim and she met her big sister for the first time ever. It was the most beautiful thing for mommy and daddy to witness. Mikah kissed her and loved on her and it tickled us pink to have them meet. I will be posting that video, as well as pictures, on the blog in the next day or two.
Continue to keep our angel in your prayers. She will have a borviac line inserted tomorrow. This is a line put in her groin area to receive the antibiotic therapy for the next few weeks. It is a procedure she will have to go to the O.R. for and will most likely have a breathing tube inserted during the surgery. I try to keep my "what in the hell else, is this poor child going to have to endure?!?!" thought process to a minimum, but believe, me it still exists.
Keep praying, and stay tuned to the telly, who knows?.?. I haven't gone searching for the stairs to the heart hospitals roof top, but surely if I make it up there and start screaming like the crazy woman I feel at times, you might actually see me on the 10 o clock news!

Presley transfers to the heart hospital

2008-06-27T20:19:00.021-05:00

Presley transfers to the heart hospital monday for her heart surgery. This is bittersweet. On the one hand, this is one step closer to surgery and one step closer to home. On the other hand, we leave this safe haven we have known the last 4 and a half months. I realize that the fact that I worked at the hospital Presley has been at, plays a role in my feeling so at home there. But truly, it is these NICU nurses and doctors that have made this entire experience bearable. Mike and I will always be indebted to these nurses, as well as the wonderful Dr. K. They have taken care of my baby during this fragile time, as well as me. There has been more than one occasion when I have cried at Presley's bedside and many of these nurses have comforted me in those times. There are some amazing and lovely ladies in that NICU, they are all so incredible.
And Dr. K, I have the utmost respect for this man. Believe me, there have been times I wanted to bang my head against a wall trying to communicate with him. But he has never, ever failed my daughter and I love him for that!
I know there are exceptional nurses and doctors everywhere. However, I will always believe that what we have experienced here, goes beyond exceptional. Many of these nurses truly love our daughter and I will always, always love them for that. Please pray for our transition to the heart hospital and for Presley... these women have been the touch and the voices that she has known for the last 4 and a half months. I worry for her as she leaves the embrace of 'the army of surrogate mommies' who have cared for her so sweetly. God bless them all, it is my hope that each of them know the difference they have made in our lives.

Little Miss Pres

2008-06-18T12:10:00.014-05:00

Little Miss Pres was such a joy today, she was awake during my entire visit. She has reached the weight needed so Dr. Klein called the cardiologist. They scheduled her surgery for July 2nd. I am very excited and just pray that nothing changes in the next two weeks. They will transfer her to the heart hospital where she will have her surgery, a few days post op. We will continue to keep everyone posted!
Click here to see her 'passey video'. Too cute. It is real work for her to keep it in, as you can tell from this picture...quiet the contraption we have set up around her! LOL!

We have now entered the 'blogging world'!

2008-06-09T20:08:00.008-05:00

We have now entered the 'blogging world!!' I have been working on this blog for Presley the last couple of weeks, as well as the one for our family. Please know that these blogs are as much a 'scrapbook' of sorts for Presley & our whole family so I have copied all of the previous updates from her care page onto this blog. For those of you who have followed her progress on the care page you will have read most of these posts. However our 'story' at the bottom of this blog is new. I will continue to post on her care page until after her surgery so you can continue to view her progress there or come here to our blogs.

Having said that, Presley has really had no change this week. She has continued to gain weight which at this point is our biggest concern and goal. I have no doubt she will meet the 9 lbs by weeks end and hopefully we will at least have a surgery scheduled in the next few weeks. She has been successful with her nipple feedings, this pleases me so much. I am under no illusions that she will ever nipple large amounts until her heart is repaired but the fact that she does well with the small amount they give her and seems interested is very promising. So all is well with my sweet girl and as always, I thank you all so much for caring.

I do want to share a quick story before signing off...Mike & I moved, to where we live now, 2 years ago. At the neighborhood Walmart I shop at I have ran into a mother and her daughter, who has Down syndrome. Guessing, she must be around 4 or 5, a little blondie and truly a cutie pie. But both times that I have ran into her were prior to Presley being born and I distinctly remember that each time I turned my cart down the same aisle as her, I said to myself "aaahhh, that is so sad". This really bothers me, why in the world would I automatically look at this child and think how 'sad' her life or the life of her family is? I know it is just innocent ignorance so I don't necessarily beat myself up for it. I have never known or been around someone with Ds. Which makes me think of what Nicole said, a mother of a daughter with T21 that I wrote to after seeing her family blog. She said "If you weren't grieving it would mean that either you weren't normal or that you had known someone closely who has T21 & that you already knew that your daughter was destined for joy along with your family." That was huge to me... joy and T21 could go together??? I have to say, I am well past thinking that they can't but believe me, initially I couldn't imagine it. I know Presley may have challenges and delays but we will move through them and be stronger for it. I am not trying to minimize the other issues in her life, believe me, Mike & I long to have her healthy and home. But really, in the grand scheme of things, her Ds just isn't that big a deal to us anymore. I felt the need to share my 'Walmart' story because there have been a couple of times recently that people have seemingly been uncomfortable when I speak about Presley and her Ds, as if they feel badly or just simply don't know what to say. Know that I am familiar with the 'innocent ignorance' first hand so don't be offended when I say: please don't feel badly for us and please don't feel uncomfortable to share in our lives or conversations regarding Presley. We want everyone to know that Mike and I are not at all sad that God chose us for Presley. And who knows, perhaps being a part of our life might just make you smarter than I was, maybe when you run across someone with Ds you won't make the silly assumption that I did and think that his or her life is anything 'less than'. Maybe instead of 'aaahhh, how sad' you will say 'aaahhh, how precious'. I have no doubt our life will be full of many 'aaahhh, how precious' moments ~ and we will share many of them on our family blog so we hope to see you there!

Lot's of news!

2008-06-01T21:25:00.015-05:00

Lot's of news and wonderful news at that!! Presley has done very well this week. She is doing much better in regards to her need for flow & oxygen, it varies but is minimal. She has had no fluid build up and her twice a day feedings are going well considering how hard she has to breath while trying to eat. So having said that, I received a call from Dr. K Friday to discuss the latest game plan. Presley is now 8 pounds. She can't come home unless she can be adequately fed. Feeding her via a bottle could be a feat that she just may not master 100% until her little heart is repaired. I know I said she has nippled well the past couple of days but these are VERY small portions in relation to how much she gets via her feeding tube. Furthermore, her heart is beating so fast that she burns alot of calories so her eating enough is very important because of her need to quickly gain weight to have her heart surgery. It is a 'tail chasing' ordeal (or a 'beat my head against the wall' ordeal, I have called it both). So any how, this is where we are at. Dr. K did discuss with me, as well as another surgeon, the possibility of inserting a feeding tube directly into her stomach for her to come home. I said absolutely not!! This is not something I am willing to consider yet, another surgery just to have her home for her weight gain. I would rather move in with her at the hospital than make her endure this. Not to mention, having her home in that condition would entail isolating her somewhere out of Mikah and Jett's reach. I am not crazy about having tubes inserted in my baby with a 1 and 3 year old running around and I would rather not climb on top of the refrigerator to feed her!!! Luckily the surgeon consulted was also not crazy about her having this surgery. SO...Dr. K went to the cardiologist and explained all of this and asked 'what is the absolute lowest she can weigh before they would operate on her heart?'. The cardiologist said 9 pounds. OKAY GUYS....now I am getting to that wonderful part I mentioned. That is 3 pounds less than what they had originally said and 3 pounds could be the equivalent to 2 months or so! So here we are, only one pound off before Dr. K can go to the cardiologist and say "Let's roll!" Ultimately the heart surgeon will have to be okay with this weight (yeah, the cardiologist is just on the same 'team' as the heart surgeon - being the rock star's that these pediatric surgeons seem to be, we don't even meet them until minutes before they roll my child through the double doors) but hey, the rock star's manager (aka the cardiologist) seems to think 9 pounds is possible. So, I am abso-FREAK IN-lutely ecstatic!!! Mike and I were on 'a high' all weekend. We just can't believe our baby may be home with us this summer. Thanks for caring and keep praying, we will continue to keep you posted.

Presley has had a good week.

2008-05-28T12:51:00.009-05:00

Presley has had a good week. However, I was unable to share much of it with her as we are a sick household again!! Never the less, Miss Pres has managed to continue her up hill battle like a little trooper. Still no fluid build up...yippee and she is weighing 7lbs, 11oz. She is still requiring a flow of 4 liters, they had been successfully weaning her this past week but as of yesterday she just really seemed stressed and the doctor ordered it back up to 4 liters again. He has however, wrote an order to start nipple feeding her once a day to see how that goes. It is really too soon to tell you how that is going as that was just initiated yesterday. She seems to be sleeping a bit more the last few days. I never seem to mind that, I think it makes me feel less guilty knowing she is sleeping in my absence rather than being awake without me. So, as Miss Pres flutters along I still have absolutely no idea when this little butterfly of ours will be coming home. You know, the other night Mike and I were talking about something else in our lives in which we really need the Lord to show Himself. And I told Mike, 'you know, the one thing I have learned through our ordeal with Presley is how we have to really be 'tuned in' to when God is talking to us'. I mean there have been times when I am thinking He is no where to be found and even wondering if the whole 'God' thing is just a big hoax and I might be in this alone. Sorry, I don't mean to offend anyone, but in the deepest and darkest of times throughout this ordeal, I have gone to that uncertain place. Then something from somewhere will assure me of His presence, He's existence - kinda like a thump on the head! A thump on the head saying, 'Here I am, you just weren't listening when I was talking to you through that friend yesterday' or 'You didn't see me in that moment the other day'. I told Mike 'unfortunately He doesn't just come down here and talk to us directly' and Mike said "Man, that sure would make it easier!" I had to laugh because I just know that feeling so well!! I mean how wonderful would that be if God would just appear and hunker down next to me and say "Okay Honey, Presley is going to be in the hospital until such and such date and the reason I am making her stay there so long is because......" ;-) Well, I will settle for the ways in which He does show himself. He is amazing and does have a plan, I do know that. The other day in one of my 'less than best' moments of faith I decided to read from my daily devotional out of chronological order...rather than read the entry from that date I flipped back to February 19Th, Presley's birthday... "Endure...Do not forget to meet all your difficulties with love and laughter. Be assured that I am with you. Remember, it is the last few yards that tell. Do not fail Me. I cannot fail you. Rest in My love. Wait in silence awhile, conscious of My presence,..." Thump!

Good news!!

2008-05-18T01:30:00.004-05:00

Good news!! Dr. K pulled Presley's chest tube Friday afternoon and as of Sunday evening all seemed well. I wish I could post more, perhaps something poetic and moving. However, I am just not feeling up to it tonight, no particular reason...just a down day. I know the pulling of her chest tube should call for Horah's and Hooray's but I am just not up for either at the moment.
Thanks for the prayers and let's hope that it is in the Lord's plan to get her home sooner rather than later. Can anything at this point (13 weeks) be considered sooner? Anywho, perhaps if she was home I would have a lot fewer 'down' days. :-)
As always, thank you all for caring!!

Happy Mother's Day!!

2008-05-11T01:31:00.004-05:00

Happy Mother's Day!! I had a great Mother's day. Mike & I went to visit Miss Pres together this morning. We don't get to do that often so it was a real treat. She was a little sleepy head, as usual. However, you will see from the new pictures that she did open her eyes when getting a kiss from Daddy. Her reaction from my kisses??? Nada, nothin', ZIP! Apparently the whole 'Mother's Day' thing doesn't carry much weight. No worries, I have no doubt there are plenty of smiles with kisses in my future. You will also see a picture of her with a smile while listening to a tape recorder. That is her listening to Mikah singing and talking to her, she just loves it!! I made a tape for her to listen to when we are not there for her during her wake time. The nurse's are very good about playing it for her and they all say she loves it! Mikah does all her animal sounds for her and sings her ABC's and 'you are my sunshine', it truly is the sweetest thing.
We attempted to clamp her chest tube early in the week to see how she would do prior to pulling it. Unfortunately she still had some fluid build up in the tubing so they unclamped it and hopefully we can try again soon with success. She now weighs 6 pounds 11 ounces and Dr. K continues to be aggressive with her caloric intake. This past Monday, May 5th, was her due date. It was kind of a wierd day for me. When she was born at 29 weeks everyone said to expect her to be in the hospital until 'term', I remember thinking, 'no way, she will be home sooner than that!' Yet another example of this being 'GOD's plan' and not mine.
I have had many people ask just when do I think she will be able to come home?? To be honest, their guess is as good as mine. I have really struggled with this but I am just not asking anymore. In fact, I try not to think about it at all. I just thank the Lord every day for taking care of my baby, I ask him to continue to give the doctors and nurses that care for her the ability to do what they need to and for giving Mike and I the strength to endure all of this. I have had to SURRENDER, so to speak. The control freak that I am can not do a thing about any of this and I have found a place of peace with that. For those of you who know me well, surely you can appreciate how big a feat that has been for me.
I spend much time on the internet these days, not looking at Down syndrome stuff so much but looking at the personal blogs of families that are walking this path that Mike and I will now journey down. I have to say, visiting these blogs and looking inside the lives of people on this 'road less traveled', I am overwhelmed. There is beauty and amazment out there that I have never had the opportunity to see. I have emailed a couple of them, Teana and Nicole. These are women who share their lives and families with the world and they have reached out to me, I feel privileged that they would. Nicole wrote something very poignant in her email to me...she said 'We often think of having a child with T21 is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen'.
I know my 'road to acceptance' may still have a ways but I realize that much of that may come from not having my baby home with me and therefore I don't have the lovely distraction that Presley will bring. Having seen these amazingly beautiful families, and they are SO amazingly beautiful, it helps me to know that this 'perfect life' I thought was no longer within my reach...well, they help me to see that perhaps, PRESLEY is how I will have that PERFECT life. I don't know if you guys can understand that, I guess you really don't need to, but I needed to if I am going to do this. So thank you Teana and Nicole! I hope you both don't mind that I share your families... Nicole&Tarenne and Teana&herPresley.

I am happy to say this has been a good week!

2008-05-05T01:33:00.005-05:00

I am happy to say this has been a good week! Presley still has the chest tube that was placed the Friday before last and where it drained a significant amount initially the drainage has diminished to almost nothing in the last 24 to 36 hours. Therefore, the last word today was that Dr. K, plans an xray and if all is well he may pull it. Yipee!!
She now weighs 6 pounds (12 is the magic number for her heart surgery), she is on room air but still needs a flow of 3 liters to help her out in her breathing. Much of this need could diminish just by her getting bigger and stronger. Dr. K puts it this way...he says, 'the NICU is all about buying time... we just hope to buy time until they get bigger and stronger and often that in itself corrects much of the issues', let's hope.
She is still receiving all of her food through her feeding tube. I am not getting upset about this any longer, not rushing the nippling aspect of her care is important right now, it will come soon and slow. I have learned that the whole 'suck, swallow' thing is more difficult and stressful than we realize for these little ones and I don't want anymore set backs. So I am more than willing to be patient.
You can really tell she feels better, she is awake so much more. Unfortunately she seldom blesses me with much wake time. I go to see her and it is like "ZZZZZZZZZZZ" the whole time I am there. Then when I call later the nurses say 'Oh, she is just so cute and so awake this afternoon!'....the little stinker!!! I forgive her though because today she gave Daddy, in his words, his 'best visit ever'. Mike started spring ball this past week so his days are long and he hasn't been to see her so he was aching by this weekend. He couldn't wait for his visit this morning while I stayed home with Mikah and Jett. He came home glowing, with pictures and a video! (I get the zzzzz's and he get's a visit worthy of a video...go figure!) He took her some toys that played music and she was following the sound, looking so curious and alert. Mike said he felt as if it was the first time he was able to see her when she didn't look really sick or was sleeping the whole visit, I was so pleased for him.
Mike may have got the special visit but I received something special this week too, a dream. It was so vivid and because the last two weeks I have found myself struggling with things a bit more than normal, the timing was wonderful. I haven't even shared it with Mike, I think I just needed to hold on to it for a few days by myself. The dream was short but unbelievably sweet. I dreamed it was the day she was leaving the hospital and the nurses were taking all the tubes out of her and the sensor's off and there she was laying in that hospital bed looking at me and I picked her up. I held her.... I REALLY held her, no tubes, no sensor's, just my baby and me, it was such an amazing feeling.
So yeah, as I said, it has been a good week and a good week means we are one step closer to a great day, my dream day.

P.S. Sorry, no new pictures at the moment. It is just the one from last week is going to be so hard to top...HA!
I promise to take some this week, keep looking, keep praying and THANKS for doing both!

Is that the cutest picture you have ever seen??!!

2008-04-27T01:34:00.006-05:00

Is that the cutest picture you have ever seen???!!! On the back, the nurse that took the picture wrote "A midst the storms there are ray's of sunshine" Apparently several nurses were standing around her bed talking to her and she was just smiling away so her nurse took this picture for me.
It has definitely been a 'stormy' week. As I mentioned in my last post Presley has developed a clot which has caused and could continue to cause some problems. Because of the accumulated fluid the doctors put a chest tube in on Friday and it drained so much fluid the first 24 hours....thank God! Her breathing has improved significantly. I sat at her bedside this morning for an hour and a half watching her breath 40 breaths per minute, which was incredible!!! (I have watched her breath 80 breaths a minute the last two weeks!!!)
She is no longer requiring oxygen and her flow is down from 8 liters to 2 liters!! Yipee!! They will keep the chest tube in a while and at some point clamp it off to see if the fluid starts to build up again, we are needing prayers that it won't, if our prayers are answered then they will pull that chest tube and we can get on with the business at hand, trying to come home!!!
This past week has probably taught me more than this entire 10 week ordeal... The first day of Presley's life her doctor told Mike and I we were going to have to 'roll with the punches'. I had forgotten that until Mike reminded me. It is so true...this ordeal has peaks and valleys and it can go from one to the other in such a short amount of time. I have to realize that I can't fall apart at every set back but keep my faith and move through it - that doesn't mean I can't go to the bathroom and cry once in a while, it's amazing how much that helps :-)
I can't tell all of you what your words of support have meant. There are nights I can't sleep and I go to the computer and look at Pres' pictures and read all the inspiring words you guys take the time to send us. Mike and I truly need you each to know that your words and prayers are sustaining us in this time. Please don't think for a minute that we don't cherish them....we cling to them!!!
Thank you from the bottom of our hearts!! Let's hope for more good news next week!!!!!

P.S. I don't expect you all to look at that picture 100 times a day like I have but just go look at it again......doesn't it just make your heart swell????!!!!

I am just so emotionally drained

2008-04-23T01:35:00.003-05:00

I am just so emotionally drained that I didn't think I had it in me to post an update but I need to beg everyone to pray. My little Presley's condition has made a turn for the worse. They have found a clot in her vena cava, most likely from the picc line she had in for so long. This is why her retained fluid has continued to increase and her difficulty breathing has worsened. The hematologist said that the clot is well established and that treatment most likely won't resolve it that we just need to pray it breaks up on it's own or that the other vessels around it start to compensate for this blockage. I am feeling very desperate, Mike and I both are very scared for our little Pres. They are inserting a chest tube this morning to drain some of the fluid. Mike and I are on our way to the hospital where we will be unable to hold her which sends me over the edge... After this chest tube is in place the rest is a waiting game...to just see how and if the clot corrects itself. Please pray, this sweet angel is having to endure so much, I just need everyone to please lift her up in prayer.... please, please...it is all I know to do for her, I feel helpless, all I can do is hope the power of prayer intervenes once again for this little love of ours.

Hello everyone!

2008-04-21T01:35:00.004-05:00

Hello everyone! I hope I am not too much of a downer on this update. I am finding myself a bit at wits end these days. Presley has managed to get through her infection however she is still not being nippled due to the fact that she is still unable to tolerate it well.
In this past week we have had to increase her oxygenation a few times, later being able to wean it back down to room air - but she is still needing a 'flow' to assist her in oxygenation. She has been back and forth on a flow of 3 to 5 liters per minute. Her work of breathing is increasing, it is as if she is running a race which could be why she is sleeping so much this past week as well - running a race can tire you out!
This is all very discouraging to me because now that the infection is resolved I can't blame these issues on that so I fear much of this is now her heart issue. It is important to say that she can not come home as long as she has a need for this flow. Mike met with the cardiologist last week and he did make us feel much better. He showed Mike a diagram of a healthy heart and one of Presley's heart and explained the surgery and let us know that it is a pretty uncomplicated surgery....(we gotta catch a break somewhere I guess). They want her to be 12 to 15 pounds, which normally is about 6 months of age, they patch the holes in her heart in just one surgery and then after about a week in the hospital and with a heart that properly functions we will finally have our 'pink' little baby. She will have a cardiologist in her life forever but that is to be expected. Mike took my list of questions and the doctor spent time to answer each of them as well as any Mike had and Mike said he really liked the guy. He even said after looking at Presley, her chart and echo's that he thinks she is doing well. I, on the other hand can't seem to see a light at the end of the tunnel. Today they increased her flow from 5 to 6 liters a minute, the most she has needed and the wrong way on the flow meter to be getting her home. I just had a mini break down after this news....it is like...."HELLO!!! IS ANYBODY FREAKIN' UP THERE??? WHEN can I have my baby???" Sorry, told ya this one might be a downer.
Please keep praying for her and maybe this week throw a prayer in for mommy, I know I need to keep my faith and stay strong, it is just hard some days - (those of you who think I am so strong would be pretty disappointed if you could see me today). I realize she is where she needs to be, Mike reminds me that we wouldn't want her home if we were unable to care for her needs. Most of the time I just think like a mommy though, surely just being home with us where she can be held all day and hear our families laughter is the best medicine of all. I realize that is naive and if it is her heart making her have these difficulties and she can't have that repaired for 6 months then what does that mean? Is my baby going to live in a horrible hospital for 6 months??? I think 9 weeks is 9 weeks too long, I can't imagine much longer. This is just a question no one can seem to answer right now. Well, let's hope I have better news next week...enjoy my sweet baby's new picture and pray that this 'race' she is working so hard at running has a finish line somewhere in the near future!

I finally finished my course of antibiotics

2008-04-13T01:36:00.004-05:00

I finally finished my course of antibiotics and was able to see Presley Friday. It had been a week since I had seen her and whereas she had already had 48 hours worth of antibiotics for the infection they found in her blood I was still pretty shocked by her apperance. As you all will notice in the new pictures I posted, her color was really off and she had so much fluid in her neck and face that I was taken aback. She was awake the whole time I was there, she or the good Lord must of known that that would help me during this visit...it was a bit emotional.
Her doctor has been very agressive in her care the last 48 hours. He discontinued her picc line (a central line for long term usage), this is an I.V. that went up the inside of her arm, through her neck and dropped somewhere in her chest area. This could of been a contributor to her retained fluid so I was happy he felt it could be removed now. He is also rapidly decreasing the amount of formula she receives through a tube and is increasing the amount she gets through a bottle - WHICH by the way she is taking beautifully. Yipee!!! I have fed her my last two visits and I can't tell you how wonderful it is to hold my baby and feed her. The past 7 weeks I would watch the other mothers around Presley feeding their babies and I would be so envious but here we are, reaching yet another milestone!! Her color was much better today, I was sorry I didn't have the camera. She slept most of the visit today as she did yesterday during Nana's visit. I don't think Nana cared, it was the first time she was able to hold her and I that was joy enough for her!
Presley's doctor gave me the number to her cardiologist and I am going to get in touch with him this week. Much of her retained fluid and color could be from her infection but it could also be from her heart condition so I feel the need to get informed about it and get that whole process under way. You see, we have a very full, very blessed and happy life planned for this little girl and we are anxious to get on with it!!!!
I know life is very fast paced for everyone and things get in the way but please don't tire of praying for her, it is all we need and ask for, and we thank you so very, very much!!!!

I am sorry to say I have no new pics

2008-04-09T01:37:00.005-05:00

I am sorry to say I have no new pics of my little Presley, we are still a pretty sick household. I am on a course of antibiotics and should be able to see her Friday, which will make a week since seeing her! I call several times a day and the nurses are so sweet and tell me every detail, they know how sad I am to not be able to see her. She had lab work done yesterday indicating she too has an infection. She had been running a slight fever the last few days and yesterday her nurse noticed she seemed lethargic, her oxygen level would decrease and she would have the occasional increase in respirations so she sent off some blood work and the infection was confirmed. They started her on a course of antibiotics and I am sure she will get better soon. She is doing well with her feeding, she is now getting 9cc's every 4 hours, however, they are not feeding her through the nipple until her infection is improved. So that is the latest, I can't wait to see her Friday...now that I know she is in a real crib I feel motivated to bring some of the cute clothes her Aunt's have bought her and make her look like the doll baby she is!
Thanks again for caring and visiting the carepage, it is so nice to know so many care.

Finally...

2008-04-07T01:37:00.004-05:00

FINALLY....after almost 7 weeks, here is the web page I mentioned a month ago, regarding Presley's progress. It took my sister's help in setting it up and a thank you to Kathy for the web page info.
As most of you know Presley had her 1st surgery last Sunday and is doing incredible! She now weighs 5lbs,2.4oz and as of Friday they have been feeding her. They started with 3cc of food every 6 hours, to understand just how much that is, a teaspoon is 5cc's. A few times a day they attempt to feed her with a nipple and she has done well...great sign!! Today they increased her feedings to 6cc's every 4 hours. Her nurse today said that she nippled 2cc's and then she seemed tired so she gave her the rest through her tube. She is on room air (no oxygen) and is doing well and is awake more often, I am sure this has much to do with the fact that she is now almost 36 weeks, as of this coming Tuesday, April 8th.
Mikah, Jett and I have all been really sick and I haven't been there to visit her for 3 days, it makes my heart ache. Her nurse today said she took her from her isolate and put her into a real crib and has a swing by her bed to put her in ocasionally. I feel like so much has happened in the 3 days I haven't been there. Mike has seen her but I hate that I can't be with her - especially knowing she is awake so much more.
Most days I feel good but some can still be sad and today was one of those days, most probably because I am missing her. It took most of the day being sad until I said something to a girlfriend this evening...I was telling her how Pres is doing and told her how amazing and strong she is and as I said it I realized that if she can be strong through all that she has had to endure than surely I can be strong as well.
I will continue to update the web page every couple of days, Mike and I thank you all for caring about Presley and her progress. She is one amazing little girl, every single nurse that has her has fallen in love with her, even her doctor is smitten with her and if you knew her doctor you would be impressed, he is a man not smitten by much.
I will have recent pictures on the page very soon. Thanks again to all of you!!!