It’s Hard On My Heart

Hana had a good day. They increased the amount of breastmilk they are giving her and they decreased her dopamine. She was very agitated throughout the day and they did end up giving her a small amount of sedative. She would wiggle around and try to pull out her tubes or rub her eye. She had a good chunk of time were she was alert and we read her stories and talked to her. She even tried grabbing at her hanging toys or the pages of her books.

The evening plan is to do a couple of CPAP trials in preparation for taking out her off the ventilator in the morning. That being said, her heart started being erratically but her blood pressure was ok. Doctors came in. They did an EKG. Meanwhile, they were cracking open a baby’s chest a few rooms down and installing an ECMO device/machine (an emergency procedure to take over the work of the heart). It felt tense. I started to cry. Again. It reminded me how hard this whole thing has been on my own heart. I love Hana so much and it hurts so much to see her suffer. Sometimes she tries to cry (but she makes no noise because of the breathing tube) and her face has the look of pain on it that breaks my heart. I want to hold her and cuddle her and soothe her. But I can’t, yet, and it hurts my heart.

I love this baby (and her heart).

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12 thoughts on “It’s Hard On My Heart

  1. I can’t imagine how hard it is. You know, we’ve been friends for about 35 years and I’ve seen you have every emotion yet I really don’t remember ever seeing you cry.. . Even when you were really sad. So it hurts me that I am across the country while you are hurting so much. I’m praying for Hana and praying for you and Paul to have peace and strength to get through the day.
    “let us draw near to God with a sincere heart and with the full assurance that faith brings.” Hebrews 10:22

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    1. Kathleen, your sweet Hana has filled my thoughts this weekend. I know that Rick and Paul have been communicating but I just wanted to let you know, from one heart mama to another, that I see so much hope in Hana’s situation. She is in one of the top facilities in the US for pediatric cardiac care. Dr. Hanley and his team are phenomenal. The fact that her care team is dialing back support and increasing her nutrition speaks volumes. She is a strong little lady. I know it can be so hard to see the hope when it’s your baby laying in the CVICU (believe me, I KNOW). But it’s there. Please feel free to email me if you have any questions or need support from a mama that has been in the trenches. ltamberrino at gmail dot com Heart hugs, Lauri Tamberrino

      “And though she be but little, she is fierce.” ~William Shakespeare

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  2. Oh, Kathleen. My heart hurts for you as well. I’m Keeping you all in my thoughts and prayers. Hana is beautiful and strong. You will get through this!

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  3. Sending love, prayers and strength to you, Paul and Hana!!! We are with you in our hearts, thoughts and prayers every second of the day!! We hope Hana feels our love on her through the softest taggie in the world… (from Anna & Emmy)

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  4. My heart is aching for all of you. You have so much love and support behind you, lean on that! Much, much love and hope! Thank you for the updates!

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  5. Dear Kat, I am friends with Suzanne and following your beautiful babies condition closely. I am praying for her and for you. Sending out healing vibes to your sweet Hana, her health fills my thoughts and heart. I pray that the doctors have the wisdom to treat her correctly, and the skill set to treat her best. I cannot imagine your heartbreak, pain, and hope, but want you to know that friends of friends are rooting for your beautiful baby girl.

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  6. I think of her and you and Paul every day. It is part of most everything I am doing. I know how scary and trying these crises can be. I am scared with you. I am so sad with you. If our thoughts and feelings were blankets, I know you would all be swaddled with many layers of care, from all of us who love you, and are loving with you, in this struggle.

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  7. I am thinking about your entire family right now, especially you, Paul, and Hana. It sounds like she is improving and that there is much hope. I have been in a few dire situations before and know how powerful that hope is, so keep reminding yourself of that. Don’t be afraid of hope. Hang in there!

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  8. Paul and Kathleen.
    Dave and I are praying for you and Hana. Prayers for
    God’s peace and strength as you face this challenge. Kathleen, keep that vision of Hana being healthy and well. It really makes a difference. As Dave was having his serious by pass surgery years ago, that visualization of him in perfect health was the only one I would allow.
    Happy Healthy Hana!
    Jean and Dave Hedger

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