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.
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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.
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