Our day may have started off bad, but it ended on a good note!!!!

Oh boy! Today was one of those days where at the end you take a deep breath and thank your lucky stars that you survived it. Wednesday's are usually my most busy day of the week, but today was even more so, I think it is because it was filled with both good and bad moments. Early this morning around 2am when Joseph got up for work, Payten woke up sobbing, acting as though she was in great pain, but not only that, she was greatly struggling with her breathing and we had a hard time keeping it up out of the 70's. I was up throughout the night checking on her and I did CPT and breathing treatments to try and help her O2 go up. It did help some, but not like I would have liked it to. Therefore first thing this morning, I called the Pulmonologist and got an appointment to see him.

I expressed my concerns and showed him the videos of her breathing, etc. and without words, I could see the worry and confusion on his face, which is not settling, nor comforting, rather it his worry made me worry even more than I already have been. The plan of action that was discussed at Payten's appointment was, that Dr. P would be calling Dr. M (the ENT) to discuss him preforming a Rigid Bronchoscopy before closing up the stoma. This will happen on the same day of surgery, but the bronchoscopy will show whether it is safe for her to have the stoma closed or if she indeed does need the trach placed again, etc., for it could also show if there if something else causing the breathing complications, such as tonsils, adenoids, or other obstructions in the airway, and if that is the reason, then we can hopefully remove the obstruction and then hopefully will be able to move forward with the closing of her stoma. Until then, we will give her an antibiotic and a steroid to help infection, inflammation airway and hopefully open things up more. All in all it was not the best news, because there is indeed a problem, we just are not certain what that problem is. Dr. P did send us for an x-ray of Payten's sinus cavity and of her throat, in hopes to see if all of this could be chalked up to a sinus infection or to help him see without having to do a bronchoscopy, if there is something obstructing her airway. I still do not have these results, we should have the results sometime tomorrow . I am just praying it is better news than my gut is telling me.

The x-rays did not go as well as they could have, for the technician was a total Jerk. He was extremely impatient and rude to the fact that I had Emmett with me, making rude comments the whole time about him being there. Thankfully I took it with grace and just brushed it off during the moment, smiling through his nasty demeanor. Not only was he rude about Emmett, but he had no understanding or patience towards Payten. It made me wonder why he works where he does. I guess, they must not see many kids like Payten, I don't know? He just acted as though this was the first time he had ever dealt with a child such as Payten. He looked at her, after everything was in place and firmly states, "Hold still, NOW!" I looked at him, smiled and kindly said, "I am sorry, but that will not happen. It is impossible for her to hold still, so you need to take that into consideration and be creative with this x-ray, for she is not going to hold still for you." I don't think he liked my response, for he look extremely annoyed and said, "Well then, you need to hold her with your strongest grip and keep her still, got it?" ~ Got it, Jackass! (thankfully, people can not read my mind or I would get in trouble.) Even with me holding Payten the best I could, (for it is a two person job!) we still had to take several films, which did not make him happy at all. Each time he got more and more frustrated, reiterating to me the importance of firm grip and holding her still! Thankfully we got a good film and we able to leave his negative presence.

However, as we were leaving, he says to me, You said your daughter is struggling with her breathing and that is why you needed the x-ray,  correct?" I responded, "Correct." Which he responds with, "Well, that makes sense. I certainly can see the problem." What? Are you kidding me? Did you just say that? These were the questions going through my head, along with, You are not a doctor and you can not tell me you see a problem and then have the gull to leave me hanging. I left this appointment confused and frustrated beyond belief. I wish I would have been more upfront and questioning, unfortunately his comment left blindsided and so shock, that I did not ask what he meant by his statement, which has left me sitting here eager to know what the results will show and worried that there is something seriously wrong with my daughter. Let's hope that is not the case and that I will know the results early tomorrow, for I do not need more stress than I already have regarding these breathing complications Payten is suffering right now.

After this terrible morning, our day got better. Payten had therapy and she did so, so. She was not the ROCK STAR, she has been in past therapies, but we could tell she was struggling and so we gave her a break and let her take a nap. After her nap, I got the kids ready and met up with Joseph at Payten's Halloween party which was at one of her Therapy clinics. It was a lot of fun, the kids really enjoyed themselves. Here are some pictures of the night,

Not the best picture, but still super cute! Payten was dressed as Bell from Beauty and the Beast, Makenna was Snow White, Emmett was dressed as Jake from Jake and the Neverland Pirates (of course!), and Zachary was a Star Wars, Jedi in training!

 

After we got some pictures taken, the kids dived into all the fun activities they had set up,

 

 These two pictures are of Emmett and Makenna crafting! Such cuties these two are!

 

 

 This is of Zachary with his miniature "Puffles" family he created!

 

And, drum roll please,

 These are the finished products of our crafting! I think I have some budding artists here!!!!

 

After the kids were finished crafting,

 

They carved a pumpkin and this is Zachary holding the finished product! I have to say the kids did a great job!

 

We ended the night with some trick or treating

 

and here is the loot we got! However, I must say we got a little ripped off, for there was no candy! Not even a little! Oh well, the kids still had a great time, even if there was no candy for Mom to steal!!!!

 

Before we left, we were able to capture a cute moment of Payten with her Physical Therapist, Anna,

 

what a sweet picture of the two of them on such a fun night! We love Miss Anna, she is the best!

 

Seriously, tonight's fun really helped put a good twist on a day that started off not so great! See there is silver lining in everything and there is another silver lining I would like to share in regards to all of Payten's troubles, that silver lining is, that at least her breathing is okay when she is awake! See, you can find good in everything! I pray that all of you had a fantastic day, like ours ended! Before I go I want to leave with a fun video of Emmett doing his new favorite thing, Jumping on Joseph's leg!

 

 

I hope this video made you smile, like it did me and that you all have a blessed night! 

You are stronger than you think!

Lately I have been feeling exactly what this quote above states, The harder I try, the harder life seems to get. I feel as though, the harder I try to focus and remain positive, the harder it becomes to remain focused on the positive, if that makes any sense. But the reason I share this quote and the reason I love it, is because it is a simple reminder to me that I am not alone. I am not the only person who has struggled with this concept. The best of the best have struggled with this and that helps me to realize that I can do this, no matter how hard it seems to understand and do, I can do it/over come it, as long as I try and keep trying and remain faithful and hopeful. These thoughts reminded me of another quote that I love very much and that quote is,

I love this quote for it is so true. In all aspects of life, sometimes the only way through the storm, is by saying a prayer and then facing the storm or challenge head on. I have found though that I am extremely lucky, for in most circumstances, depending on the circumstance, I do not have to weather it alone, I have my family, particularly my husband who is there by my side weathering the storm with me. Together we have found that though there be these moments where all you can do is pray and then move through the storms, there are also moments where the best way to get through it, is by dancing,

I know this quote says relationship, but I believe it pertains to life and that life is not all sunshine and once you learn to either pray it out and move forward or dance/play in the rain, you can survive most anything. Joseph and I have proven this to be true. A lot of marriages that face similar circumstances such as ours, fall apart. Why? Because it is beyond hard and stressful and people forget that it is not all roses and sunshine and they forget to play sometimes, even when it is pouring outside and they quickly lose themselves to the storm and pull apart from each other inside of leaning on one another for support. Joseph and I however have chosen to try to see the good in all and to learn to dance/play whenever possible, though it may be super gloomy at times, we still try to dance as often as we can and pray when we can not find a reason to dance! No, it has not been easy and no that does not mean we have not faltered and given into the storm, but in all cases, we have been able to find our way out of the storm with the help of each other and that is why we have survived.

Payten has taught us this. She has taught us that no matter what, you can always smile and get through. That is what Joseph and I try to do with everything we are faced with. These past two days have been hard on the both of us. I have been suffering from a severe migraine, something that is rare for me, however they do come on every now and then and when they do, it is beyond horrendous and is debilitating to the point of non functioning. Seriously, it has been hard, luckily, however, it did not come on until last night and Joseph was here to help me with all my Mommy duties. Which he could have complained about and got frustrated over, instead he was kind and helped me with what needed to be done by, taking over our nightly routine, even though he was extremely exhausted from working a twelve plus hour day and wanted to go bed. He weathered the storm like a champ!  He took over and made dinner, then took the kids outside to plant flowers and afterwards, let them watch a movie, while he picked up the house and dinner and then got the kids to bed. Seriously, this is what I have been talking about. Marriage is helping each other, it is being there when the other person needs you, it is supporting each other through hard times, no matter what and Joseph and I are extremely blessed to have learned this from such a wonderful teacher, our daughter Payten.

And his help did not stop there, for my migraine lasted until about 8 o'clock this evening, with some give and take throughout the day, but again he came home, tired as can be, but instead of complaining that his wife was still sick, he picked up and did what needed to be done. Thankfully the migraine is gone and thankfully it went away for a short time today, which allowed me to get Payten to Physical therapy, but once therapy was over, it came back full force. I am very grateful that the pain let up for a short time allowing me to be able to take Payten to Physical Therapy, for she did a fantastic job. I wish I would have caught it on camera, but I was on the phone and therefore missed the opportunities to catch her awesomeness. Seriously, this is the best session she has ever had, even before the seizures started. Payten took steps in the light gait without any prompting from the therapist or help. It was only five steps, but hey we will take it! That is a major accomplishment and it makes me realize just how strong Payten is, for she has not been feeling well and she still was able to preform wonders at Therapy.

Let me explain, Payten's breathing has been awful for a few days now. But the odd part is, it is only awful when she is sleeping. She sounds perfectly fine, except for a little congested sounding while awake, but when she is sleeping, it all goes to hell, seriously. It is like she forgets how to breathe. Therefore, her sleep has been extremely poor, which is why her awesome performance at therapy was such a surprise, for I was fearful that she would fight all the hard work therapy gives her, due to exhaustion, but that did not stop her. She was a ROCK STAR! It made me realize, more than already knew, how strong and amazing she really is. However once therapy was over, she fell asleep and her breathing went back to being horrible. So she went from standing great and walking on her own for a short time, to this,

Do you see the crazy, awful retracting/breathing she is doing? Very scary and if my migraine would not have hit me full force while driving home from physical therapy, I would have taken her in to see the doctor, but once my migraine hit, everything went fuzzy, seriously, I do not know how I made it home, it was that bad. Thankfully my Dad was able to pick my kids up from school and if I would have thought about it, I would have had him take Payten and I to the doctor, but in the state I was in, it was best that we just stayed home. With oxygen support, Payten was fine, no her breathing still was not good,

but it did get a little better and I knew with breathing treatments and CPT it would get even better, which would allot me time to get over this horrendous migraine, so that when I did take her to the Doctor I would be coherent! Her retracting worries me, especially that it only happens while sleeping, but I know that breathing treatments and CPT will help, the reason I want to get her into the Doctor, is to make sure she does not need more than that, such as a steroid or antibiotic. So as much as her breathing worries me, it is not something that is so urgent I had to see a Doctor today, it just would have been nice, for she might have received a little more relief from the labored breathing.

Watching Payten these past few days, struggle with breathing and then show miraculous strength through different tasks during the day/therapy and then go back and forth between the two, really helped remind me just how strong this little girl is. It made me realize that as long as she is willing and able, she can and will do anything. It is her choice and as long as she wants to, she will and can defy all odds placed before her. I know that she can and will show the world just how strong she is and by doing so will teach all of us what it means to truly be strong and faithful. She truly is a miracle. The other day I was reading a chapter from a book one of my friends gave me, the book is titled, The uses of Adversity, by Calfred Borderick and the chapter she gave me to read was, chapter 12 and as I read this chapter from this book it put so many questions that I have had since Payten came into the world into perspective.

In my Mormon faith, we believe that we all lived in a pre-mortal life before this earthly life and therefore, we chose our life and some of the life challenges we would face, not all challenges, but some and in this book it talks about how some people chose much harder paths than others, why, we do not know, maybe because they understood their true strength and knew they could do it, I don't know, but some paths were chosen and some were not, which I believe strongly in Payten's case, that she chose/volunteered for this life and the journey she would face/endure. This understanding helps me to not become angry when I have feelings creep in that say, Why God, why did you do this to my daughter, why did you forsake her? Me being able understand that this path was something Payten chose, helps me to realize just how special she is and how strong she is and that she can do it and I need to let her do it and help her do it. This book also helped me to realize that not only did Payten choose this life, but I chose this life as well, I volunteered to be this little girls mother, because I loved her and could see the beauty within her and I wanted to have her in this life so that I could be reminded of what true beauty and strength is, for sometimes we forget.

So even though my path is hard at times, it helps to know that I chose it, for I ultimately knew I could do it and though it is hard to watch my daughter suffer at times, I know that it is her choice to be here and that when it becomes to much for her to bare, she will go home, for I believe that it is her choice too. The chapter in this book, helped me to understand that yes, Payten has been one deaths door a few times and though I have wondered why she has not died, I need not wonder, for Payten has chosen to dismiss the messenger that came to take her home, because she felt/knew, that there was more that she could do and teach to those around her and so when the time is and she is ready, she will go home, but for now I just need to love her, learn from her and know that her life is in her hands and she will determine how it goes with her Heavenly Father's help. How grateful I am for my friend in giving me this chapter from this awesome book, for it helped answer some much needed questions and give me a sense of relief and comfort, for that is what this knowledge has given me.

I am so thankful for my daughter and the strength she emulates daily. It teaches me to try harder, smile more and have faith that I can do anything. Though these past few days have been painful, literally, I know that it will get better. I am thankful for my friends, my family and for what they teach me on a daily basis. Thank you for all that you do. I hope you have a great day tomorrow and lovely night.

Have your cake and eat it too!

These past three days have been heavenly. They were not your typical everyday type of days. I forgot how nice days like these are, as well as how needed they are every so often. These past few days were the, "have your cake and eat it too" type of days. Except in our case it was have your Ice Cream and eat it too!

I woke up Friday morning still feeling on top of the world with just having celebrated Payten's fifth birthday and Joseph's birthday, that I wanted to keep the goodness going and since all the birthday cake was gone, I decided, well actually Emmett decided, we should have Ice cream for breakfast. After taking Zachary and Makenna to school, Emmett followed me around with the container of ice cream, saying, Ice Cream Pleeease. Which I thought to myself, what a prefect way to start off keeping the "goodness" feeling going! So Emmett and I had ice cream for Breakfast and boy was it good! This picture says it all,

After that, the day just kept getting better! The morning and afternoon went slow and smooth, which helped in having a relaxing, laid back, fun day with Emmett and Payten. Then the evening came and Joseph and I were able to break away and go on a date, something we have not been able to do in a long time. It really was a much needed reprieve for the both of us. It reminded me just how important going on dates with your spouse is. We did not do anything super special, just went to dinner, did a little shopping and ended our night with a movie. We had dinner at Kneader's Bakery, which I absolutely love! Then we went and walked around Toys R Us, (yes, I said Toys R Us!) because we needed to find a birthday present for Makenna's friend whose party was Saturday. After the fun filled shopping came the movie and let me just say that my husband loves me. He knew that I had been wanting to see Austin land the Movie for sometime now and instead of seeing a movie we both would have loved, he set aside his ego and took me to see Austin land. It was great, I loved the corny-ness and silly comedy of the whole movie. It really was a light hearted movie that was much needed for it gave me the laughs my soul had been missing for a few weeks now. Seriously, it was a date geared toward me and I know my husband did it on purpose considering the resent events I went through. I came home knowing that I was a queen in his eyes and he absolutely, 100% loves and adores me. What a lucky lady I am! But it does end there!

Saturday was even better. With the help of our sweet niece, Shelby, Joseph and I were able to go to the Temple and be apart of our other sweet nieces sealing to her husband and baby. To say it was beautiful would be and understatement, it was heavenly. It helped remind me of what is important in life and put things back into proper perspective. Congratulations, Chelsea and Russell and little Carter! What a glorious day! I pray you will always remember it and the feelings and words that we felt and shared. After the temple, Joseph and I went and got a bite to eat at Zupas Cafe, another one of my favorite places to eat. Which was a nice surprise, as well as amazing, for we never get two dates in a row and we got it. It was so much fun to sit and talk about what we felt in the temple and just laugh together. These moments were such a great reminder to me of how much I adore and love my husband and how lucky I am to have him as mine forever!

Once our mini lunch date was over, we went and walked around Dana Park shopping center while waiting for Makenna's birthday party to be over, which was at Girlie Girlz Boutique in that same shopping center. Girlie Girlz is one of Makenna's favorite places and they put on awesome birthday parties. Makenna had a great time being a Mermaid! This video shows just how much fun she had,

Such cute girls and such a great way to celebrate a little girls special day. After the party was finished, we went home and since Shelby was still there and she had no plans for the day, Joseph and I decided to take advantage of the extra help and time, and go and take an afternoon nap together! Seriously two dates and a nap all within hours of each other, pure awesomeness! Joseph and I woke up feeling refreshed and on top of the world! Shelby was feeling pretty good herself! This is how us Merrill's pay our babysitters, Spa Zachary and Kenna,

So not only did Joseph and I get a much needed refresher, so did our babysitter, with the help of our cute kids! After our lovely nap/break, Joseph did some yard work and Shelby, Makenna and I went out to dinner and did some shopping! I have forgotten how much fun it is to go out with just the girls! (even if these girlies were half my age!) I love my niece and my daughter, they are two of the cutest girls around! We laughed and laughed and laughed! It was so much fun! We bought a few outfits for each of kids, went grocery shopping and then just drove around town talking. It was a great night of fun. Here is one of the outfits we bought Makenna,

Isn't she darling?! Seriously, these past three days have been great and today was no exception! It was nice and relaxing, mixed with a little spiritual nourishment. I could not have asked for a better three days! I am so looking forward to what this week brings and hopefully enjoying more fun days ahead. I pray you all had lovely weekends and that you all have great nights.

Some additonal thoughts on Payten turning five.

Today was post Birthday madness/fun in our house, but before I get into that, I want to say something about my previous post about Payten turning 5. The reason that I shared Payten's story of life at the beginning, was not only because I felt strongly to do so, but also to help you to fully understand, why it was such a BIG deal in our family, that Payten turned 5! With a beginning like Payten's and the obstacles and trials that we have come to face since then should help you to see why it was such a big deal. I share to help people fully understand what the big deal was in Payten's fifth birthday, because way back then, while sitting watching our daughter fight to survive, five seemed to be an impossible age to be reached and yet we reached it, which is another triumph for Payten in her book of life. I do not believe many cases would have turned out the Payten's case has, but for whatever reason, Payten's life has been spared.

 

I do not know or understand the why behind it, all I know is that there have been a few instances where Payten should have gone home to her Father in Heaven and she didn't and I thank him everyday for that. But I also question why she is still here, for I wish she could escape this mangled body that she is trapped in and be free of the pain and suffering that she faces on a regular basis, but obviously, there is something that she has to do, there is something that Joseph and I have to learn and I pray daily that we can learn it and she can do it, so that she can be set free and the only way she will be set free from all of this is through death.

 

 Right now we are in a good place, a few weeks and months ago we were not and I know/understand that this long, hard journey is not over, for we still have many obstacles we are going to face. The hospital is not a thing of the past, yes the hospitalizations have lessened, but we still go back and forth between hospital and home and that will most likely be a forever thing, unless God allows a miracle and Payten's brain and body are healed or she goes home to him, either way it is in his hands as to when this journey ends.

 

In these five years, Payten has learned how to sit on her own, she has taken steps with the help of a gait trainer, light gait machine, or by the help of an adult holding her up. She signed for the first time ever on Monday, she had her tracheotomy removed and she is no longer ventilator dependent, etc. etc. Seriously, the list could go on and on of all the accomplishments Payten has achieved in these past five years. These are the miracles that we are talking about. These are the miracle that we have seen in these five years, things that we had ultimately hoped for, but honestly could not say for sure would ever happen in Payten's lifetime and they have. I do not fully know what the future holds for my daughter, but  I do know that my daughter has a progressive brain disorder that will eventually take her life, when that day will be we do not know, but we do know that one day it will come. So therefore, I will hold out the hope that even though there will be more times during Payten's life that death comes knocking on our door, we will have the strength to conquer if and hopefully receive another five years with her, filled with more unimaginable miracles.

 

I saw this picture today on Facebook and I thought to myself, hey this could be Payten with her sister Makenna in five years and though they will be bigger and taller, the picture will still look the same, a sister helping a sister, and it made me think, maybe, just maybe the dreams I had for these two sisters will come true, it might take ten years to get there, but that is okay, for I truly believe Payten is a butterfly still trapped in her cocoon, trying desperately to fully emerge and once she emerges it is going to be breath taking, but that immersion might not happen until the next life and I have had to come to terms with that and guess what, I have, for I ultimately know that no matter what, I am going to witness that immersion, for I will have Payten forever and forever and that is what gives me the strength and hope to keep going.

If I said that this did not test my faith, I would be lying. The stories I shared in my last post, about the previous obstacles Payten has faced, really left me questioning my Mormon faith. SURPRISE! I'm a Mormon! LOL! Shocking, right?! I am totally kidding, I know it is not very surprising or shocking, for I am pretty open about my beliefs, but hey I had to say it, for that is a huge part of who I am! Anyways, moving on, during the dark hours where I watched my daughter struggle for life, I began to question God. I began to ask myself if what I believed was true. I felt as though God had forsaken me in my darkest hour. But I am here to say, no, I am here to testify that I know God loves me. I know that he lives and that he is real and knows who I am and understands my heartache and my sorrow and pain. For through these hours of turmoil and grief, have come the greatest of testimonies inside me. I can not, nor will I ever, deny that there is a God in heaven, and a Savior Jesus Christ, and a life after death. These are the reasons I can handle what I face everyday with Payten with grace and dignity. This knowledge is what will ultimately allow me to let my selfish desires go, for no Parent wants to say goodbye to their child or out live their child, but because of these truths, I can and will be able to let her go home to heaven and that will be the day that I know she is free from all pain, sorrow, and hardship, for that will be the day she enters paradise. This is some of what these past five years have taught me with my Payten and I am beyond blessed to have been taught this first hand. Most families do not get this blessed opportunity to learn first hand through their child what the pure love Christ is, but we have, most people do not get a glimpse into heaven, but we do. This is why I call Payten my greatest of blessings, for she truly is angel sent here to teach me the way back to heaven.

This is why Payten turning five was such a BIG deal and why it was so important for me to do something special for her. Believe me, her birthday celebration was nothing praiseworthy, but it was special. We kept it very simple and we had her most favorite people there, who are very special to her. We placed balloons all over and we had tissue paper thrown about for her to play with, for these are some of her favorite things. Then we opened presents and sang Happy birthday and that is about it, other than, all of us spending time playing with her, which she absolutely adored being the center of attention! I went with the theme of simple and it turned out prefect, I guess the saying is right, The simpler, the better! The smiles on her face said it all last night. And this morning she woke up happy and ready to have fun, so instead of rushing things and starting the day right away, I took it slow, and we stayed in our pajamas and played with the post birthday balloons and toys, it was pure heaven. Seriously, I can not wait to see what the next five years brings, for I am hopeful that we will be allotted another fives years with our sweet Payter Tater! I am grateful for all my blessings and I hope each of you are thankful for yours. I will continue to pray for God to bless you all and may you all have a good night.



A tribute to Payten and her fives years on this earth! Happy Birthday, my sweet angel!

Disclaimer: Before I delve into my post, I wanted to say that this might be a long post, for there are a lot of emotions and feelings that will be expressed, that I need and want to share. So please bear with me and I hope you truly can see into my heart with what I have to say about my sweet Payter Tater. You may need a box of tissues, I have mine, but I believe mine are necessary, for I am going to be reliving moments in my head that are extremely emotional and heartfelt.

Today is my sweet Payten's aka Payter Tater's Birthday and this picture is one of my absolute favorite pictures, she looks so cute and perfect in it. Her hair is to die for, which I would do it like this all the time, but she will not keep it in, she either pulls it out or she rubs her hair on the carpet and then it looks as though she just woke up. So I am grateful that I was able to snap this cute moment, for it did not last but for maybe two minutes. Before I get into what a beautiful little girl Payten has become, I want to take you back fives years ago, when her journey began and let you see/experience first hand, through my words what she and us have gone through.

So here it goes,

As I was reminiscing this morning about Payten and how far she has come, I came across these three beautiful pictures and a flood of emotion and tears came over me, for it took me back to the day she was born and three days after that, where she stayed in the Continuous Care Nursery of the NICU. And I want to share with you the story of Payten's life from the beginning.

Payten was overdue and any mother out there knows that when a baby goes over their due date it is pure torture and all you want is to get that baby out, first off so you can have your body back and sleep again and second, so you can hold the sweet angel in your arms, love on them and begin your new adventure with them. That is exactly how I felt on Oct. 16, 2008, when I went into the hospital to be induced. I was beyond excited to meet my new little girl. I had, had dreams of her future with Makenna and how they were going to be best friends and do everything together, such as play dress up, do each others hair and makeup, play house and barbies together as well as take dance lessons with each other, etc. And the whole time I laid in the hospital bed, with those images playing through my head.

Once the labor got going, it was like all my other deliveries, smooth and fast, there was absolutely no complications during it, to indicate that there was a problem, so when Payten came out purple and not crying, my heart stopped. I remember thinking, Oh my gosh, I just gave birth to a still born baby and I remember saying a silent prayer, Pleading to my Father in Heaven for that to not be the case and to let me hear her cry, but I still did not hear her cry for what seemed to be an eternity, which in all actuality, was maybe a minute or so. I remember the nurses putting Payten on my chest, screaming at me to pinch her, rub her back, do whatever it took in order to get my baby to cry. So here I lay, tired from labor, with a beautiful little angel in my arms who appeared lifeless and I remember holding her ear up to my mouth and whispering to her, Please my precious Payten, cry for mommy! Then I kissed her and the nurses grabbed her from me and rushed her to the corner of the room and started suctioning water off of her lungs, then after a short moment of suctioning, I heard a cry and my heart started beating again, for my daughter was alive and I was beyond grateful for that.

Shortly after the nurses and doctors suctioned 60cc's of water off of Payten's lungs, they took her down to the observation nursery, which is the step right before the NICU.  Unfortunately this meant that we did not get the typical post delivery pictures, but the above pictures are more than enough to cherish, especially after the experience we had shortly after Payten came into the world. Due to the fact that I had an epidural, yes, I am a wimp and I get epidurals, hats off to all you brave Mommas out there who do it all natural, but I am not one of those Mommas! Therefore I had to wait to hold and see my sweet daughter until the following morning around 8am, Payten was born at 11:40pm, so you can understand a little bit of the torture I went through, waiting and desperately yearning/wanting/needing to see and hold my sweet princess, but could not due to a stupid epidural and the fact that I had to wait until the darn medication wore off.

Once I got down to the Observation Nursery, my heart was over joyed, for here laid the most beautiful baby girl mine eyes had ever seen and she was mine! All mine! Seriously, she was more beautiful and perfect than I ever imagined her being and it melted my heart. Right at that moment all I wanted was for time to stop and allot me a moment with this sweet angel, holding her, rocking her, all while singing sweet lullaby's and feeding her. Unfortunately time did not stop, but I did get the moment of holding, rocking, singing and feeding her and what a glorious moment it was, until Payten turned blue on me while eating and the nurse screamed at me, for I was stupid (according to the nurse) and did not know how to feed a baby, mind you I had two babies prior that I feed with no trouble, but according to this nurse, I had no clue what I was doing! Therefore, Payten was admitted to the CCN (continuous care nursery) in the NICU, in order to teach Joseph and I the proper technique on how to feed our daughter, for she was not like "normal" babies, because she did not know to or understand rather, how to pace herself, therefore we had to do it for her. Her feeding time went like this, three sucks on, three seconds off to breathe, three sucks on, three seconds off to breathe, and so forth. It was a little different at first to get the hang of, but we got it and after three days later, we were ready to go home.

Now at this moment in time, we had no clue what the future held for this precious soul. We believed the worst was over and that everything was going to be smooth sailing from hence forth. Boy were we wrong! Payten went from looking like the above pictures, to looking like this,

So small, frail and listless. This picture right above, is of Payten, taken a week from when the pictures at the beginning of the this post were taken. HUGE difference, not because of the tubes, etc, but rather because of her size and energy level. For in this picture she is a couple pounds smaller, than in the beginning pics. and all of this happened within a weeks time.

this picture is of Payten at a month old, I posted it because I believe it still shows a significant difference between it and the beginning pictures, though they are a month apart. It is crazy to me that her down hill slope went so fast. It still blows my mind every time I compare the pictures and think they are only weeks apart.

Now that you see the difference that a week made in Payten's life, let me continue on with her journey, for the roller coaster ride has just begun. At Payten's one week well check, things really hit the fan, for Payten had lost a couple pounds and that was not sitting right with the Doctor at all. Right when the Doctor walked into the room, she starting ripping into me about Payten's weight and asking me what her feeding schedule was and how I was not doing it right and went on to tell me what exactly I should be doing, etc., etc. And as much as I tried to explain that Payten just would not eat, rather she wanted to sleep more than eat, the Doctor just kept ripping me a new one, about how I was not "preforming my mommy" duties to the best of my ability and it was my fault that my daughter was not eating, because I was not doing everything I could to get food into her. Which sent me into an emotional breakdown, for I was doing everything I could to help my daughter and here I sat, pleading to a Doctor, crying out for help with a child who needed it so desperately and the Doctor could not or rather would not see what I saw nor listen to my pleads of concern.

Finally after the lecture on how unfit I was in regards to feeding my child, we were able to move onto the next topic of concern, Payten's cry. Payten did not or rather could not cry. She had no cry and when I expressed my concern to the Doctor about it, all the Doctor did was roll her eyes at me. She said, "Well what do you expect, your daughter has no reason to cry. Because, like you said she is sleeping all the time! Maybe if you fed her more and you actually gave her a reason to cry, you would hear her cry." Then she went on to examine Payten and Payten turned bright red and had the face of a baby who would if they could, be screaming their lungs out, but nothing came out, not a sound. The Doctor turned to me with the most horrified look and said, "Is that her cry?" Yes, that is her cry, Doctor! Her response to me was, "Oh my, that is not good, there is something terribly wrong with your child, we need to get you into see the ENT (ear, nose and throat) Doctor and we need to have you seen as soon as possible." Thankfully the ENT Doctor was kind enough to rearrange his schedule, stay after hours, in order to fit Payten in and see her, for he is the Doctor who saved her life.

Right when the ENT Doc walked into the room, his jaw dropped and he starting spouting off every concern that I tried to express to the pervious Doctor and he informed me that my daughter was going to die if we need not do something and do something NOW. Which again sent me into another emotional break down, but this time, I was both thankful and horrified, for I finally had a Doctor who was seeing my concerns and acknowledging them. He went onto to examine her, which he found that everything was in working order, at least in his field of expertise, but that he could not send me home, for if he did, my daughter would die and he would not be able to live with himself if that happened. So instead, he stayed after hours even longer and made phone calls to NICU and had them readmit Payten to the NICU and that is where it all started.

We spent a month in the NICU, where we found that our daughter was a failure to thrive case, meaning she expended too much energy trying to eat, which burned more calories than she was able to get, due to the fact that she tired too quickly which kept her from being able to compensate for the energy spent while feeding, therefore, she was not gaining weight, which caused her to stop growing. So in order to help her thrive, they placed an NG feeding tube (which is the tube that goes in through the nose and down to their stomach). This was to ensure that she could eat without burning calories. She had the NG feeding tube for a little over four months. Not only did we receive the label failure to thrive in the NICU, we also received much more information that was overwhelmingly scary. There we got different ideas of what they thought were wrong with Payten, which were all devastating diseases that had her life ending within the first year and the test all took about two/three months to get back, so you can only imagine the pure hell we went through with thoughts of the worst case scenario's playing out in our heads for three months straight, until we finally got the okays that those were not what she had.

These were the days that I spent on my knees, rather than eating or sleeping, pleading to my Father in Heaven to spare my daughters life. I remember one moment in particular, where I broke down sobbing in the social workers arms, telling her that I would do anything, that I would take any challenge God gave, as long as it meant I kept my daughter, for death was not something I could handle right then. I did not fully understand the impact of my words that day, nor did I care, all I wanted right at that moment was my daughter and that is what I got. I have gotten fives years to be exact and I can not begin to tell you how miraculous these fives years have been. But honestly, I sometimes wish that I would not have been so selfish back then, and rather than pleading for my daughter's life due to my own selfish desires, I wish I would have pleaded for what was best for Payten, because now I would do anything to spare some of the pain she faces, even if it meant death, for I love this little girl so much and wish for her to be free of the pain she faces on a regular basis. However with that being said, I would not change a day I have had with her, for I have cherished every moment of time I have spent with my sweet angel.

Once we got out of the NICU, we were able to be home with our sweet Payten for about a week, then we were back at the hospital, this time being admitted to the PICU because our sweet daughter's heart was failing. Yep, our child was in congestive heart failure, her heart was three times it's normal size due to having to work so hard. Again I found myself during this desperate time of need, on my knees pleading for my daughter's life. Seriously, there were a few times that we should have lost her, but for whatever reason we didn't and how grateful I am for that, yet sad at the same time, for the pain that she endures is heart wrenching. (if that makes any sense.) After Payten had heart surgery to close the PDA valve in her heart, which was causing all of her congestive heart failure issues, a week later she had her tracheotomy place, due to her breathing becoming worse and worse over time and this was the only solution for our daughter to be able to live. We spent three months in the hospital during this time. I can not begin to tell you how amazing the staff was, they became like family to us and I love them still to this day for everything they did for our sweet daughter. After that LONG hospitalization, we finally went home, but two days later had to come back due to a pneumonia, which resulted in Payten having her fundo placation and G-tube (feeding tube in the stomach) placement surgery. This hospitalization lasted three weeks. Seriously this back and forth between home and hospital went on the entire first year of Payten's life. We were at the hospital more than we were home.

It was not until six months of age that we finally started to get some answers, for that is when the Doctor finally decided Payten was strong enough to have an MRI done, which showed the atrophy of her brain, which sent us on a whole new roller coaster ride with a whole new quest for answers. Again we had diagnosis  after diagnosis thrown at us, that all were life threatening, meaning her days were numbered even more so than her actual diagnosis now has on her. This finding sent us into a whole new round of hospitalizations, trying to figure out what was going on. It was not until a year and a half that we received the answer as to what Payten suffered from and our journey has just kept going on since that point, with different obstacles along the way.

Payten through these fives years has defied so many of the odds, it is unbelievable. She has pulled through moments that were unfathomable and that left us baffled as to how she did it. She has taught us what true strength is. If I stood here and said that I have not changed through all of this I would be lying. If I said that I have not gained a greater knowledge of understanding, compassion, love and empathy towards my fellow man, I would not be giving myself credit, for I do have a greater knowledge of these things and I owe it all to my sweet daughter, for she has taught me so much about the meaning of life and what is important and what it truly means to live. Though this little girl is only five years old today, she has taught me more in the my 32 years of life than I could have ever learned without her. She is absolute perfection and she defines what strength means. She puts the truth behind the saying, Where there is no struggle, there is no strength! She struggles for life on a daily basis and she has conquered everyday for the past five years! I do not know what the future holds for her and to be quite honest, I try hard not to think about it, for it scares me, but what I do know is that no matter what, I am going to do my best to give my daughter a quality life, rather than quantity. I will continue to cherish the days I have with her and when she dies, I will forever remember her and the lessons she taught me. Before I end this post, I want to show pictures of Payten throughout her fives years. I want to show both her ups and downs, her triumphs and her failures, etc.



This has just been a glimpse of what Payten's life has been like the past five years through pictures and this is a very small glimpse. These pictures not only depict her life and the ups and downs that she has had, but it also shows the love and joy of a life well spent with a family who adores her. We celebrated tonight with Grandmas and Grandpa and one of her Aunts and Uncles, as well as her immediate family, Mom, Dad, brothers and sister. Here is a video of us singing Happy Birthday to her,

It was a very special night, spent celebrating a very special girl and the miracle that her life has been. I hope by me sharing part of her story tonight, you get a better understanding of just how special this little girl is and how strong she is to have endured everything she has endured with a smile on her face. I love my Payter Tater. I am going to end with a song that I made up, that I have sung to her since she was in the NICU you, it goes like this,

I love you Payten, oh yes I do,

I love you Payten, it is true,

I love you Payten, I do,

Payten, I love you!

You are so beautiful, oh yes you are,

You are so beautiful, you're my shinning star,

You are so beautiful, you are,

Payten, you're my star!

I hope that we may all gain a greater understanding of how beautiful and percious life is and never take one moment of it for granted. I love you all and I hope you all have a blessed night.