It’s more than seven hours post-extubation and Hana is still doing well. Her heart rate is still very low, but the heart failure/transplant doctor said she looked great. But still, but still… well I will try to sleep anyway and remind myself to put away fearful thoughts.
She spent a lot of awake time with my parents – hearing stories and being entertained by toys. I hope tomorrow I have more time like that with her. I hope I can figure out how to mother her well, I have no experience to draw from to prepare me for this scenario.
Hana spent several long moments looking at me with sad eyes. This troubled me. I hope she is not feeling that we have failed her by letting strangers poke, prod, twist, stick and drug her. I hope she has not lost her trust that we are here to love and protect her. I hope she is not sad. But maybe all the above are true. I might feel the same if I were her, not understanding because she is so young. Maybe I have a sad baby who does not feel loved and protected by her parents. I will do my best to change this.
Today Hana turned six months old! What a way to do it!
I love this sweet baby.
Hana's Heart 
i have found that children at this age are very rarely sad for themselves. She feels your sadness and echoes it in the only way she can communicate. She is sad WITH you and for you. You are an amazing Mother. She knows that and feels that and only lacks the words to reassure you. Children are so intuitive even at only 6 months of age. Perhaps she just aches to comfort you too.
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So glad that she’s tolerating extubation. Of course no one can know for certain Hana’s thoughts, but you can reliably know that any sadness is not due to any shortcomings of you. You are the bright ray in her day, her reassurance, her home. There are circumstances beyond your control and the allowance of poking and prodding by strangers is your effort to give her the best chance in life.
You are doing great. You are by her side during this unbelievably terrifying time and somehow you are remembering to breathe, walk and talk let alone have the wherewithal thereafter to capture this experience in eloquent writing. You are doing great. Hana has an awesome mama and there’s no one who knows that more than her.
Thinking of you, Christina
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Kathleen–Hana knows how good her mom and dad have been through all of this. She knows you two are there and doing the best you can. Which is awesome.
All our love. Gary,Brenda and Ashley
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God bless and Mother Mary protect sweet Hana and her parents. 💗
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Do you know what she knows? … Everytime I open my eyes, I see my mom or dad or grandma or grandpa. Everytime I open my eyes i have their undivided attention. Honestly, how many kids can say that (I say with guilt). She sees your emotions and when she is happy, she sees smiles! When she is sad or in pain, she sees your tears!… When her eyes were closed, she heard your voice. When she cried silent cries mommy said, “I hear you.” She is in one of the most responsive environments to learn love and communication. I pray for you to feel comfort and love and confidence in your daughter’s love. I love you all.
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You brought tears to my eyes with this post! Your daughter KNOWS you are protecting her, supporting her and loving her with all your heart. It runs so much deeper in them because they don’t have any of that other “stuff” to clutter up those basic and innate emotions. Don’t doubt yourself, mama. You are doing a fantastic job and that strong and beautiful little girl knows it!
Jen
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Everyone said it so beautifully! You are doing terrific, just being by her side…reading and talking to her – that is what she needs from you now. Thanks for keeping us updated…I look forward to your postings every day. Hang in there!
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Kat and Paul, I am a friend of Jen and Teds from Pittsburgh and have been following your story and praying for you guys all along the way. Your ability to write so honestly about your emotions just shows how brave and strong you are just like Hana. I used to work at Children’s here in the PICU and my first thought is how great she is doing. She is putting all of her energy into keeping that tube out. What we take for granted as such a simple thing that just happens, she is accomplishing, but it’s so tiring for her. Even a smile would take too much effort at this time. It will come. You all are there, your voice, your touch, your smell, your love. Believe me, she feels and sees it all. I know her nurses have fallen in love with her (how could you not)and with this team of supporters, Hana feels all of your strength. Stay strong and know you have a tremendous support system all around you near and far.
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Oh, Kathleen, thank you for sharing your story and heart ache. I send you all love balls every day- a sweet visualization I learned from my friend Chad years ago. I caught himdoing something with his hands, He said he was making love balls and floating them to me from across the table. I could almost feel them! I’m sure your daughter feels your love balls too.
I’d love to support you both with a home visit, offer stands💗
Ingrid
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Don’t you dare doubt your mothering Kathleen! I know you are doing ALL you can for her. I’m sure she is sad and hurt but you have been there for her every step of the way and she can feel your love I am absolutely certain. The fact that she is doing well tells me she is feeling love from you and Paul and your parents!
I wish I could erase this whole thing for you like a bad dream, but I pray that you will all be strengthened, that everything will go well and in the end you will be looking back not believing you went through it but all of you stronger, more bonded than ever, and knowing that you as a family can go through horrendous times and come out better for it.
You have every right to every emotion you are feeling, but I promise you that you are an AMAZING mama. Love you!
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Sending lots of hugs your way this morning. Parenting a child in the hospital is probably one of the hardest things you will be asked to do. It can feel like you are always choosing the lesser of two evils. When Ava had her second open heart surgery just after her 6 month birthday, I went back and forth on how I was best able to mother her through all the physical pain and discomfort. Her doctors suggested that I not be around when she was getting pokes and other painful procedures so she wouldn’t associate me with the pain. I decided to go a different route and stayed close by, even assisting in restraining her for pokes, dressing changes, etc. We would both cry together while I held her down. I can’t say if one way was better than the other but that was what felt right to do for Ava. And verbalizing that you understand that something is painful, scary, etc. can go a long way, even with a baby.
Hana looks like she is doing really well with the extubation. Moving so quickly from the CPAP to the high-flow cannula is great! I would strongly encourage you to reach out to the pediatric cardiac social worker and ask if LPCH has child-life specialists that can come visit with you. They will be able to offer suggestions to you and Paul to increase your positive interactions with Hana while she’s in the hospital. Feel free to email me or friend me on FB and we can chat more if you have other questions.
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You may not have prior experience to draw from, Kathleen, but I could tell from the very first time I ever saw you with Hana what an amazing mother you are. You are so warm, loving, present. I know Hana knows this. I know somewhere her older, wiser soul knows that all the poking and prodding is because you want her to be healthy and well. She knows that you and Paul are doing everything you can because you love her and her little heart. I am praying that you get to hold her in your arms so soon.
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I know nothing about any of this, compared to others who have already commented above; but your story is so moving I’ll pass on some wisdom that someone much wiser than me said: you cannot chose the path that your child must walk down — someone upstairs picked it for them. That means that it’s not your fault if it’s hard, and its not your failing if you can’t ease their suffering. All you can do is try to be as loving as possible and accompany them on their own journey.
I wish that every child in the world that has to face this kind of hardship so young could do it with a mother and father like you both. Our hugs, wishes, and blessings to all three of you.
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I’m so happy to read this post to see she is still doing well post-extubation, thank you so much for sharing these intimate words and pictures with us! Sweet Hana on her 6 month old birthday, those sweet baby cheeks and long eye lashes. She is ABSOLUTELY precious. Kathleen, I am so proud of your strength and courage through this situation. Although there is no way to make sense of and understand the reason that Hana, you, Paul, and your family have been brought to walk this journey, there is one thing I do understand for certain. I’ve known you for more than 25 years and you are one of the strongest and bravest people I know. You show love to all you meet, and that is very obvious from the outpouring of support you have right now. You are an Amazing mama, You are Strong, You are Brave. Hana knows that you and Paul are there, your are protecting her, and that you love her. She knows it by the sound of your voice, your touch on her cheek, your finger in her palm, the look in your eyes, a bond between a mother and her baby that cannot be broken. My heart aches for you my friend, thinking of and praying for you all! love you!
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Hana and all her family are very much in our thoughts and prayers. Please know you are not alone and you are loved.
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Hana knows you love her very much. You have NOT let her down. You are wonderful parents. Don’t ever doubt that. Hang in there. I am sending more healing thoughts your way. Hugs.
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Hi great reeading your post
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