Sunday, August 14, 2011

The final hours ...

It has taken me a while to  be able to finish this blog up, I surely expected to be updating while in the hospital.

 July 29th came and with little  sleep  Dustin and I  made our way to the  Fetal Care Institute  to begin the  process  of the best and  we would soon find out  the hardest day or our life. Once we were there  the  two grandma's,  3  grandpa's, 2 uncles, and  a  great  aunt and  uncle showed up to  help us welcome this amazing little guy into the  world. While laying there  getting  all checked in and   ready Parker was  kicking away and I was  enjoying every last minute of it and  getting scared  as every minute that passed meant that  my little  guy would have to start his fight soon. The  ride up to delivery was  one of the  scariest moment I thought I would ever have . Delivery was a little later than  it was suppose to be  because the   Doctor was running late   but to me it didn't matter  that was just longer that I was  protecting my  baby.
Parker made his way into this  world at  9:01 am  :)  I am  not sure what time it was that  I actually got to the  NICU to see him . I woke up in recovery and all I wanted to know was that he was ok and  not on Ecmo. They kept telling me he was  doing  great and not on  ECMO, and at the time he was doing ok . At this point  family  had not  seen him  yet. As they  pushed my  bed into his  NICU  room  I seen a  lot of people  standing outside his room  and thought it was a little  weird  but I was just excited to see my   Parker,  my little  fighter.
The moment I seen him I felt complete  and for once in my life I had done something right. Even with the breathing  tubes in him  he  was perfect. He looked so much like his  daddy :) I was the happiest I had ever been in my life  with  my baby and  my husband there   standing next to me,  my two loves .
Within minutes of the best  moment in my life  it came to the  worst news anyone could ever  want to hear.       "There is nothing more we can  do" I was  so confused I was  told he was doing ok now  I was being told this was it.  I didnt  understand. They then  told me he wasnt  going to make it. My world came crashing down. How am I suppose to say  hello and  goodbye to my baby all in the same day? I just  didnt  understand what  they were telling me . They  told me that  they had the  vents on the  highest they could put them and it still was not doing enough and  he couldnt be put on ECMO b/c his lungs were not thick enough  and it would  burn them up and  right now  the  Carbon Dioxide was building up in his body and was  going to poison his  little body. My heart sank...  I was holding my  perfect little  guy that  wansnt  going to make it and I had to let him  go and  there wasnt anything I could do. I  felt so helpless, I am suppose to  protect him  and I couldnt  any more .
My amazing  nurse  Katie  is one of the best  nurses I could have  asked for. They  had mentioned taking  Parker off his  breathing machine before we  even got to see him and she said No and wouldn't let them do it , so thanks to her  I actually got to hold my baby and see him open his little eyes and he  was able to hold our fingers. She also got them to let me take Parker to St.Marys so I could spend some more time with him. She  hand pumped him  all the way there  just  so we  had  more  precious time with him  She is an amazing  women that I will never  in my life forget what she  did  for me.
Parker passed away at  2:15 in his daddies  arms.
He only  lived for a  couple short hours but he changed our  life forever.
This will be the  final blog entry for our little Parker, I will leave it up for other mothers who will have to go through this and  look for information or answers or whatever it may be that  they are looking   for

Mommy loves  you more than life it self Parker, there will not be one  second of one day that I do not think about you and what  should have  been.<3


  1. Julia, I am so very sorry for your loss and what you are going through. I came across your blog a couple of days before you were due to give birth and have been checking back daily. I know there is nothing I can say that will be of any help to you, but thank you for sharing your experience and your life. You are in my thoughts and my prayers.

  2. I will never forget Parker or you and how you gave him every chance possible. He is a special angel. Many, many prayers for peace and angel hugs.
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. I am very sorry for your loss and what you and your family had to go through. My son was born at 28 weeks and I had a nurse named Katie that was my voice through it all... Guess all Katie's are great :)... I can't imagine what pain you and your family are going through. My thoughts and prayers are with Parker and your and your family.

  4. I've been thinking of you daily, Julia. Congratulations on becoming a mama as you will be Parker's mama forever now. That love you felt in the months you were protecting him in your belly and in the moments you were holding him in your arms, that is not something that can ever go. I am so sorry you lost him, so heart-broken for you and your husband. Bless Katie for giving you that precious time with him. Bless you for sharing such beautiful love with the rest of us. Sending you strength.
    Mom to Samuel Feb 1/11
    LCDH survivor

  5. I am so incredibly sorry for your loss. The way you speak of Parker you can tell just how much he was loved, is loved, and will forever be loved. I am so sorry that you are now part of a club you never wanted to be a part of: Mommy of a CDH Angel club. Please, if there is anything I could ever do for you, please let me know.

    Mommy to my Twins
    Will and CDH Angel MJ

  6. Julia,

    I think its absolutely beautiful that you posted about Parker's amazing day - the day he got to meet the two most wonderful people (his parents).

    Just remember how you held him inside of you almost his entire life and how he was held with so much love when he closed his eyes. Without a doubt he knew every little bit of that love you both had for him.

    Thank you for sharing your story as difficult as it is. Know that little Parker was very much loved and his life, however short, touched so many and was and is important to so many. Parker's story here will remain important to so many so thank you for sharing.

    Many hugs to you.

  7. Sorry, forgot to let know know how I am...

    Renee B

  8. this was the most touching story i have ever read! i'm so very sorry he passed away just a few short hours after being're an amazing person. you and your husband are in my heart forever! stay strong.

  9. Julia and Dustin,

    My heart just breaks for what your family is going through. I have been praying for you often in the last 3.5 weeks, as we understand a similar pain. It is sometimes unbearable and I know the only thing that kept me on my feet was the love and prayers of my loved ones (and people I didn't even know). Keep talking about your sweet Parker - I LOVE that your nurse was the reason you were able to see him alive - what an incredible gift for you and your husband! Sending my love and prayers!


  10. There should be a movie about this a lifetime movie...

  11. Julia,
    Sorry to read of your loss. I lost a son as well at 9mos from medical defects he had although not CDH. My son died in my arms in our bed (came home 2days prior on hospice care)on christmas morning in 2005. From one mother to another I pray for your healing and your family as a whole and you will never forget!

  12. sorry somehow posted before I was ready.. you will never forget your son but it does get a bit easier over time to move forward with him in your heart and mind!

  13. Just wanted you to know that I have not forgotten Parker. I hope that you are finding peace and comfort in the midst of what must be a painful journey. Sending you some mama love.

    Corinne, mama to Samuel, lcdh

  14. Julia, I am SO very sorry for your loss and am completely heart broken over what you and your family are going through. Your pictures on FB and blog are amazingly precious. Please know that you are in my thoughts and prayers nearly every day now!! May God truly and richly bless you and your husband and help to ease your pain.

    I pray that you know you are SUCH an amazing and courageous young lady! I am SO very honored to have met you and am SO very proud of the benefit you are holding to raise money for CDH!!! How proud of you I am SURE Parker is!! <3

    Please know that if you EVER need ANYTHING, I am here for you!! although a virtual stranger, I would do anything I could to help ease your pain and suffering! You have touched my, and so many others, lives with your story and your experience. Please stay strong and do not give up on God as he has not given up on you. He had a much more important mission for Parker and will bless you for your willingness to be so selfless and sharing with others! Please also remember that what you've been through has helped the field of medicine to learn more about CDH and how it affects babies in the womb. You and Parker are VERY important to us all. Please remember you are loved as is your precious baby boy! God Bless you!! <3

    Sandy Westwood

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