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Bennet’s Story pt 2- 1 in 6,000

August 24th, 2012….

I hate sleeping at the hospital! I had made it very clear that I wanted all the doctors (OB, Pediatrician, etc) to do what they had to do in the morning so that we could be discharged asap. I got up, did my hair and makeup, packed everything up and then climbed back into bed to snuggle my little guy until we got the go ahead to take off. At some point during this time the pediatrician came in to check Bennet out and everything still looked ok. We had the ok to be discharged as soon as Bennet had his circumcision and final scans/tests completed.

I had no idea that this would be my last moment with my sweet baby before everything changed, but I would spend the next few weeks thinking about this time and wishing I had cherished it more.

What happened in the next hours is incredibly difficult for me to relive. So forgive me, if my usual writing style goes out the window while I share with you.

At about 11:00 am the nurse came to take Bennet back because the Doctor would be there in an hour to do the circumcision. They decided to do everything else while they waited for him, so we could leave right after the procedure.

At 12:00 pm the nurse came back to say that his blood sugar and oxygen was just a little bit off so they cancelled the circumcision for now and we might have to stay one more night just to make sure everything was fine. She said not to worry, it was normal. She could tell I was upset, so she told us to go hang out with him in the nursery to give me peace of mind. I started crying, not because for one second I thought anything was terribly wrong, but because I wanted to go home so bad! (Sigh…the little things that mattered before I became a “heart mom”….) I now think of those moments walking down the hall to the  nursery as the last moments before our entire world changed.

It is hard to describe the way the next hours progressed and how they felt but it went something like this:
Nurse-“Oh, he is fine! We just need to warm him up and check his oxygen saturations and blood sugar one more time”
Me- “I know he’s fine! I am sorry I am crying so much, I think it is just my hormones”
“His sats are still not where they should be, I am just going to call the NICU nurse to come help out for a bit, no big deal!”
“We are just going to put a little oxygen on him and we need to put in a feeding tube to we can get his blood sugar up, then he will be
ok”

….at this point I started noticing the “shifty-eyes” the nurses kept making at each other ….

He’ s vomiting! Ok, let’s get the doctor in here…..Don’t worry the doctor is just going to check him out”
Doctor: He has a gallop in his heart, so we are just going to run some tests”
” We are just going to take him over to the NICU since he is on oxygen, it will be easier to be over there”

…I was confused, but it still never registered with me something was terribly wrong, probably because no one was saying their concerns flat-out…

“The x-ray shows no enlargement of his heart so we are just waiting for an echo”

….that’s good news right!?? Why is everyone still acting so worried? I really believed that at any moment we would have answers and that everything would be ok tomorrow….

Helping hold Bennet down while the nurses tried to get an IV in him….it never worked because his veins were all contracting

And then it happened. The moment it all came crashing down. The moment all the “shifty-eyes” stopped and everyone stopped pretending. The moment we found out we were the 1 in 6,000

“Your son has the most serious heart defect possible called HypoPlastic Left Heart Syndrome, basically he only has one ventricle, we do not know what causes it,  it is too complex for us to operate on here, you will need to choose a hospital for him to be airlifted to tonight, he will need a minimum of 3 open heart surgeries….” everything went black

I remember choosing UCLA and hearing that we had some time until they came to get him.

I remember walking back to my recovery room and one nurse whom I had never seen came out and gave me a huge hug.

I remember closing the door to my room and collapsing on the floor, while Joe tried to be strong and comfort me.

I remember the incredible ache I had to go see my other two babies.

We left for a couple hours to see our babies and wait for the call that the helicopter was on its way. My sister made french toast for everyone to eat and we tried to act normal for our kids sake. We took these pictures of Elinor showing us her handstand: This is my beautiful, amazing, thoughtful, sensitive daughter. She knew something was wrong, but she waited patiently until I had the strength to tell her. I sat her on my lap and explained that Bennet’s heart was broken and he was very sick. I told her that we were going to try to make it better but that he might have to go see Jesus in heaven. I told her he would be very, very happy to be with Jesus and that he would feel much better there. She asked me if Bennet could come back once his heart was better and I told her no. She almost started to cry, and then I saw it, she made a choice. She chose to be strong, not just that moment but for days and weeks to come my little 4 year old CHOSE to be strong. I never thought my baby would understand so much by this age but I knew in that moment that God was doing things in her life as much as He was in mine.

We got a call around 8 pm that they were getting ready to take Bennet to UCLA. We headed back to the hospital and waited by his side until they took him. One nurse asked me if I would like to change his diaper one last time and I was grateful to have one last “mommy” moment with by baby. We took these pictures from my phone right before the took him. They are terrible quality, but they represent a very specific moment and emotion:

We watched from a hospital window and the helicopter took off and we went home to our own house to sleep.

And so begins the rest of our lives….

Bennet’s Story pt 1- Love at First Sight

Connect with Christie on Instagram, Twitter, or Facebook. 

27 Responses to Bennet’s Story pt 2- 1 in 6,000

  1. Tiffany November 20, 2012 at 8:48 am #

    Wow, this made me tear up! I’m not even a mother yet, but I can’t imagine how hard this journey must have been. I’ll be praying for you all 

  2. Amanda November 20, 2012 at 10:02 am #

    Christie- oh girl I couldn’t imagine what you went thru. Jane with all the extra hormones going on- I think I would have went nuts. And my daughter sounds like yours. Very strong and I’m amazed how how much she gets at such a young age.
    Thanks for sharing! Xox

  3. MiMi November 20, 2012 at 11:01 am #

    I’m having a hard time reading this…I can’t imagine living through it.

  4. Donna November 20, 2012 at 2:21 pm #

    Thank you for telling your story. xo

  5. Maria O. November 20, 2012 at 3:05 pm #

    Wow. I came here to read the ponytail tutorial and was so impressed I thought I’d click around to see what else was here. I feel like it was fate. I’m also a heart mama!

    In 2009, our daughter, Nyx, was born with Tetralogy of Fallot, an atrial septal defect, some issues with pulmonay atresia and other nonsense. She also was a totally undiagnosed case. It was devastating and terrifying. But–she had two heart surgeries in six months and is now a totally normal, healthy three-year-old.

    Just want you to know that this heart mama way down in Texas is thinking of you! I wish your family the very best.

    • Christie November 21, 2012 at 5:22 pm #

      Wow I have been constantly amazed at what a small world this heart community is! I am so glad you found me and it is so encouraging to hear about your little girl doing so well. Thanks for commenting! 🙂

  6. Kelly November 20, 2012 at 3:09 pm #

    Oh Christie…thank you so  much for being so brave as to share your little guys story with us…your story.

  7. Heather Christensen November 20, 2012 at 5:36 pm #

    I know exactly what you are going through. My daughter was born with Double Inlet Left Ventricle (almost exactly the same as HLHS)…which in other words is single ventricle. We didn’t know that she had this heart defect until she was 6 weeks old. That day will never be erased from my memory. It was by far the worst day of my life but I had faith in God and the nurses and doctors that would take care of her during this journey of her life. We were flown to Minneapolis, MN (5 hours from where we were from). She suffered 3 massive strokes after arriving because we didn’t know for so long that she had heart problems and she underwent OHS a week later. We were there for 77 days because there were so many complications due to not knowing but God is good and he kept a hold of our daughters heart and she ended up pulling through. She is now severely disabled with cerebral palsy and epilepsy (she can’t walk or talk) but she is happy and is always smiling and laughing. Miracles can happen, I have seen them with my own eyes. God bless your whole family and your little boy. My prayers will always be with you guys. 
    Also, please let me know if you need anything. I’m always open to talking with other heart mamas about things that only heart mamas would understand. 

    • Christie November 21, 2012 at 5:26 pm #

      Wow! 6 weeks! You are one strong woman! Thank you for sharing your story and I am so happy to hear your girly is happy even if she is disabled. It is amazing how God gives us the grace to find joy in trials. Thank you for sharing with me! And I appreciate your willingness to talk! That goes both ways 🙂 XO

  8. Kathy November 20, 2012 at 9:08 pm #

    Christie,
    Prayers foing up for you and little Bennett.  My brother in law was born with the same heart issue 40 years ago and is living a wonderful, productive life.  I just want to reach out and offer something to hang onto during this time. Blessings…

    • Christie November 21, 2012 at 5:28 pm #

      Wow! 40 years ago! Did he receive a heart transplant or did he have the palliative surgeries? Thank you for sharing!

  9. Bethany November 21, 2012 at 7:45 am #

    I cried my eyes out reading this post. How brave of you to tell your readers your story so eloquently and with such strength. You are an amazing Mama, I can’t wait to hear about Bennetts health. Thinking and praying for you, as you journey on this path I am too familiar with.

  10. Kristine November 21, 2012 at 4:54 pm #

    Bennett is just such a cutie! Congrats! What an emotional time. I wish I could say I couldn’t relate, but I too was thrown into life as a heart mom when my newborn suddenly died from CHD. So thankful Bennett was hooked up to that pulse ox machine. Just so thankful.

    • Christie November 21, 2012 at 5:31 pm #

      Oh Kristine! I am so sorry! I thank God EVERY DAY for that stinking pulse ox! I don’t think people realize how incredible important that test is. Had our hospital not routinely run that test, we too may have lost our boy. Thank you for sharing your story even though I am sure it is painful. XO

      • Kristine November 21, 2012 at 5:35 pm #

        Don’t want to bum you out! There is amazing news to come from it, I’ve since advocated for screening babies, getting legislation passed in Indiana, and helping in other states, so babies like your Bennet can thrive. 🙂 Glad I found you and your blog so I can watch him grow. This is my latest project: http://www.babyheartscreening.com/November30

  11. Sue November 21, 2012 at 5:21 pm #

    Hi there I am a fellow heart mom…your story sounds much like my own…we didn’t realize the seriousnouss either b/c nobody was telling us anything until we hard the words open heart surgery and life flight…we never forget. Your story was beautifully told *hugs*

  12. andrea November 22, 2012 at 3:00 pm #

    Reading your story made me relive everything we went through with our son Sebastian…only we ended up loosing our sweet angel. Be very , very , very thankful that they ren Pulse Ox. on Bennett. I wish I new about Pulse Ox. before I delivered but unfortunatelly I didn’t and the hospital I delivered at did not do Pulse Ox on every newborn…they do now!That test is life saving and eversince we lost Sebi I tell every pregnant woman I see .

  13. Erin November 29, 2012 at 1:50 pm #

    Our stories have nearly identical beginnings.. My daughter didn’t get the pulse ox though, but was diagnosed when a pediatrician thought her heart sounded “too loud” right before we were ready to take her home. 3 months and two surgeries later, we finally did for good. My daughter was born Aug 2009 with hlhs and is currently recovering from her 3rd surgery (post op 3 days). It is a sad, sweet, scary ride- she has been worth every moment. Heart hugs <3 

  14. Jacqueline Babler December 4, 2012 at 5:38 pm #

    Are there any updates to this story, I’ve been waiting to hear. Lifting you all up in prayers

    • Christie December 4, 2012 at 11:02 pm #

      I Jacqueline. I have been meaning to write another post but it is sometimes hard to find the words you know? Bennet right now is doing good and we will find out soon when his next surgery will be. Thank you for asking! I will do a post in the next few weeks 🙂

  15. Amy January 10, 2013 at 11:14 am #

    I check often for updates on little Bennet. I’d love to hear how he is doing.

    Thoughts and Prayers.

    • Natalia January 11, 2013 at 12:41 am #

      I update sometimes on Facebook, but he just had his second surgery, called the Glenn I think. He was just extubated and is doing well. I’ll try toupdate more regularly, thank you so much for asking! I know she appreciates all the support!

  16. Stephanie October 8, 2015 at 2:10 pm #

    I just want to thank you for sharing your story. My husband and I just went in for our 20 week ultrasound a few weeks ago and while we went in excited to find out what we were having and see out baby for the first time we left scared confused and exhausted as we were told to go to ago specialist the baby’s heart did not “look right” two weeks later we went to a cardiac specialist who confirmed that our baby girl had hypoplastic left heart syndrom… my happy pregnancy stopped and was replaced with questions and fear. I’m working hard to get over that fear and let myself still enjoy and grow and connection with this baby even knowing there is a high chance she will not make it. I never thought I would be a heart mom yet here I am in the chaos. We will deliver our beautiful vivianna in January and I pray every day that she will be a fighter. Your story gave me hope aND I thank you!

    • Natalia October 9, 2015 at 10:57 am #

      Hey! Christie has since started her own blog and I am sure she’d love to connect! Her son is 3 and doing well! Here’s her site: http://abeautifulwindow.com

Trackbacks/Pingbacks

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