Heart to Heart two times too big....

There is moments in life where time just freezes for a split second...Where it feels like you are truly taking in the moment- almost an out of body looking down on your life feeling...I can only truly recall this happening a few times in my life so far...

-Looking at Craig walking down the aisle to become his wife...For a brief moment I took everyone in but didnt really see anyone at all, except him...

-The awe I felt after Noal was born...After the utter exhaustion of 21 hours in labour & other complications- The moment his eyes looked in mine & the feeling of amazement.

-And a few short weeks ago when I held Reid after her surgery...I couldnt hear the nurses or machines- I could just feel her heartbeat & time froze...

The feelings I had in such moments are what will be forever with me...But what I just experienced the last 2 weeks feels like one long moment horrifically stretched into memories I will never be able to shake:
  • Hearing the doctor pull the curtain around us in the ER to give us privacy as he told me my baby girl was in heart failure with pneumonia after almost sending me home with saline drops & telling me "it's that season"...
  • How very small Reid looked as she was raced by ambulance to the intensive care pediatric unit...
  • The hum of machines attached to my child keeping her alive...The constant beeping that drove fear into me, & then fearing for her life when she was finally removed from them...
  • Sleepless nights on a chair brought into the isolated room that was home to Reid & I for 9 nights & the nurses busy chatter right outside the door...
  • The deep look of concern & saddness in numerous doctors eyes...
  • A fear & helplessness so deep in me I could barely leave Reid's side...
  • The painfully sad cries of other children on the pediatric floor, night after night...
  • The look of understanding from other mums who were their holding their babies, hoping & praying that the love they were giving was enough too...
  • Feeling once again the love from others & the strength it brought...The messages, thoughts, care packages, gift baskets, meals, visits, flowers & courage y'all gave amazed me...
  • The painful ache missing & being away from my Noal...I tried to get home for an hour or two to put him to bed every night while Craig sat with Reid...The look Noal gave me of not understanding what was going on had me crying the entire way back to the hospital...How do you explain to your 18 month old that his little sister's heart isn't working? For a few days, I was really afraid we were going to lose Reid & for some reason those were the days that Noal kept asking where "Reeee" was...He also wouldn't let me rock him to sleep like we normally do, instead he wanted to lay on the ground with me, with our noses touching & just stare at each other...The whole world froze then- just staring at my little boy, him so painfully confused & what seemed like angry at me & praying my heart out, begging God to get me & Reid home soon....
  • Playing the "waiting game" with a life...Waiting to see if this medication works, if not than hearing the doc's plan to try another...Waiting to see if she gains weight...Waiting to see if she can breath on her own...Waiting to see if the fluid leaves her lungs & her heart returns to a normal size...Waiting to see if she lives...WAIT-WAIT-WAIT the hardest thing in the world...Those that know me well, know that waiting or patience isn't my strongest strength...So, whether Fate or God chose to give me this test to teach me that trait- I got it now- Thanks a million- I'm good for life...

At the end of 10 long days, my darling Reid came home...She is still in heart failure- Looks like Our Little Miracle got taken away- The doctors think that the trauma/complications from the first surgery, caused the hole in her heart to open twice the size, in turn causing her little heart to work so much harder than it should...


So, although she was a good little eater she was burning every single calorie just to stay alive & wasn't gaining any weight since the surgery...Therefore, we have to "medically maintain" her with hopes that she doubles in size before she has to have heart surgery...That means she is on an intense eating cycle that includes, eating every 3 hours, breastfeeding on demand & a feeding tube that I had to be trained on before we were able to leave the hospital...I could have never in my life imagined any of this...Listening for a pop in my 9 week old's stomach to make sure the feeding tube is in place, falling asleep to the hum of a machine by my bed, & cutting out cute hearts to tape on my baby's face is all surreal...


But at the end of the day I will DO ANYTHING...If I feel like a bloody cow milking 12 times a day, so be it...I truly thought I was at my breaking point at times, it felt like I was drowning in fear & helplessness...But then once again Reid brought HOPE, STRENGTH & LOVE...such love...Seeing her struggle & fight for her life stirred something in me- she is SO strong, SO determined, SO special...And she's mine...



Oh, what this lovely little soul is going to teach me in life...The fierce love I have for her, the strength I didn't know I had & the indescribable HOPE she has brought to my life & so many others is amazing...I love you baby girl & I'm so happy you are home...








16 comments:

  1. I'm glad she is going home! I will keep her and your family in my thoughts and prayers. She has very beautiful eyes!

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  2. Anonymous1.3.13

    I absolutely needed this!! Thank you Tara, Thank you Reid. I prayed to God so hard, one tough day I had with Logan this week. I begged him to tell me why this was happening, and then I read this, and it all makes sense. They are made special to teach us life lessons. To keep hoping and loving eachother no matter what. Thank you from the bottom of my heart for sharing your experiences and journey with Reid, no matter how difficult it is for you, your strength is what keeps you afloat. Ive been given a new light again, my battle is nothing near what You and Reid are enduring, and for that I have no reason to ask God WHY? My prayers are with you both every second of every word I pray.
    Sincerely Elizabeth Smith-Robertson xoxo

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  3. I AM SO HAPPY SHE IS HOME...YOU AND YOUR WHOLE FAMILY ARE IN MY PRAYERS. GOD BLESS

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  4. Anonymous1.3.13

    Hi Tara, It's Aunt Colleen and Jen. We are so sorry you have to go through this. We are praying for Reid to get better. Let us know if there is anything we can do. Tell Terry to call if there is. We hope everything works out. We love you.

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  5. Anonymous1.3.13

    Geeze T, I can't begin to imagine what you and Cally have gone through. I'm happy little Reid is so strong, she's just like her ma and pa.
    The love you have for your family is fierce; Craig, Noal and Reid are not only happy but lucky little souls too!
    Sending love and hugs as always XOXO
    Pone

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  6. Anonymous1.3.13

    Bless you and your sweet girl

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  7. Beautiful, beautiful post T. xoxoxoxo

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  8. Mandy Jay1.3.13

    You are truly amazing. While Reid is teaching you, you are teaching so many of us. Thank you for sharing your journey with us.

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  9. Muls1.3.13

    I am certain I speak for nearly everyone who reads your blog, that I am truly humbled by your new journey in life. I can honestly say that I see life through a different set of eyes these days.... I know full well it should not take an experience like this to get to that point, but I would be lying to say that's not what has happened to me.... To know what you are conquering on a daily basis is unbelievable... T, your courage is so inspiring, never doubt that. Reid is one of the luckiest little ladies I know <3 Thanks again for sharing your heart... Love you

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  10. Gayle2.3.13

    Just wanted to let you know that I was once your baby girl. I am now going to be 50 years old and no one ever thought that I would get this far in life. My Mom was an amazing Mom like you and she did everything possible to keep me alive. My Mom & I are very strong people, as I could not have my open heart surgery until I was 6 years old...so it was a long road as I also had a second congenital vein malformation as well. But my Mom always let me do everything in my life from sports to music; as I had three older brothers to keep up to as well. I was never put in a bubble. This is what the Doctors tell me today that it saved my life. My parents allowing me to be a normal kid it maded me stronger and put oxgyen in my system that I needed for my heart to work properly. They installed a swimming pool because that was the best exercise for my heart...stay strong and my prayers are with you and your family. I hope this message helps in the dark times...as I was one of those kids crying in the night and my Mom was one of those Moms that was there thru it all and she also helped other kids in the ward when their parents had to leave.

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  11. Patti Olsen2.3.13

    Wow Tara, I am in tears after reading this. So eloquent, so moving. A mothers love is fierce and a force to be reckoned with. So many people are following your journey, so be encouraged by the countless prayers that are being said for you, your precious Reid, your darling Noal, and your special husband.
    Reid has touched so many hearts and I am sure that others like myself check FB just to see how she is doing. I will continue to pray for your stong, brave little girl who certainly has the audience of the Almighty. He will see you through.

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  12. AUNT LINA-LEE3.3.13

    Dear Tara,God works in misterious ways!HE brought 2 wonderfull people together, you and Cr aig.And blessed you two with 2 wonderful presiouse little individual children.Each so individual, so special and so loving, yet needy little souls.To teach you, to love you, to share your love and talents with so many others.Others that have learned to love and care for others, many that they didn't even know.And get a strong linked chain of love and stength has been formed around your little family, you not only receive the love and strength. Yet with you sharring, you are giving and sharring your love, strength and so many talents to all that read and share your story. And others will remember their difficult times or life struggles and think back to times they didn't think that they could make it through,but they did and needed to be reminded of those times, to be stronger now with ever they may be going thought now.Thank you TARA, CRAIG, NOAL & REID !!

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  13. I heard the updates through Laura on fb...praying for you Tara and your precious (and ADORABLE!) baby girl!
    Lauren (Turner) Townsend

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  14. Anonymous3.3.13

    Your babies are so precious. Everytime I read your posts I race over and hug my own tight, even if they are sleeping. My prayers and thoughts are with you and your precious little girl.

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  15. God has got your little one in his hnds and he has given her what sounds like two very loving parents and a carng big brother. I dont has a Downs Syndrome child but i do know the worries of a child with heart disease and the feeding tubes, weight gain and all that comes with it. I hope this words encourage you, my daughter survived 3 near death experiences, 3 surgeries and pneumonia and is now a healthy 9 year old. Take each day as it comes and keep each other strong. My love to you all esspecially your special children. Fiona McArthur xxxxx

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