My heart is so heavy. I’m trying so hard. I feel so much pressure – start feeds, give meds, clean vomit, push solid foods, get her to take a bottle, get the eyepatch on for an hour, pump breastmilk six times a day, fortify milk, thaw milk, and then try to get Hana outside where she is happy, preferably with the dog so she is happy too. None of these things can slide, not really. There is the added stuff of making appointments, going to appointments, keeping inventory of and ordering all the supplies needed, making sure medications are ordered and picked up, sending messages to doctors and other care providers. This does not include bottle and syringe washing which we have had so much help doing.
I am sad. I am sad that my dog doesn’t get outside as much. I am sad that Paul doesn’t get all the time that he used to for himself. I am sad that Hana has a sick heart. I am trying to to get everyone’s needs met and I feel like I am failing. All these things are building and on top of it, I am not always gracious. (I like to think that I am gracious sometimes.) I am burning out. I’d like a few minutes to myself that is not in the shower. I know that its hard for a lot of moms to get time to themselves. But I think I just need some time so I can cry all the tears I’ve been saving.
Today was a double vomit day. The first was right after I gave the morning meds. So, I was on the phone with Stanford again. I tried giving Hana half her morning feeds, waiting, then giving meds, but it obviously didn’t work. There was a lot of great help during the day but then ten minutes after some of the help left, Hana vomited again. I think maybe she just gagged again on her pacifier, but it still really bummed me out. After a tough early evening, Hana was so fussy, so I took her on a walk and we sat in a church and I cried. I cried for not being my best self and for not having more to give.
Hana's Heart 
I want _so_ badly to help, though I don’t know what I can do 😦
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Kathleen is wish I had the words to say that would comfort you. Pete and I are keeping Hana, Paul, & you in our thoughts and prayers.
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stay strong!!! You are one of the strongest, courageous and big hearted person that I know. Keep writing that has always helped you. And keep fighting. You have a beautiful family and I can’t wait to meet them.
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You MUST take care of yourself. You don’t want to get sick and not be able to do anything! There is help for you in this somewhere. Caregivers MUST take a break, even if its a little bit. ( yeah, I know , your the mom, but still)
As for you failing??? I know that is how you must be feeling, but — no way, no how!!
You are doing an extraordinary job with difficult situations. I don’t know many folks that could handle what you and Paul are handling as well as you do.. So you can be sad, go cry, take some time somewhere for your self somehow. and don’t burn out.
there are a bunch of folks , I’ll bet, that are willing to stay with Hana while you take some time to go decompress.
OK, enough of my lecturing— Hana is the absolute cutest most adorable baby there is!! the picture on this post with her smiling a great big smile proves it too! I am thankful that you post these updates on her and with photos. Otherwise I would likely not see her grow up until she’s in high school or something!!
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God never gives us more than we can handle. When it gets overwhelming, ask Him for help. I think that’s what you did in Church. He heard you. You and Hana are in my prayers. You are doing an amazing job. Despite her sick heart, Hana looks happy and content. She is well loved.
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Prayers for your strength… Please know that you are amazing and tough and Hana is too. Please let those of us that are following your story know what you need to help from a far. Healing & positive thoughts from Pittsburgh.
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You are NOT failing and you have to ask Some one for help when it gets this bad. Your situation is so hard and you can’t be expected to make everyone happy. Worry about you and that beautiful little girl. If I lived closer I would help you every day. I’m so sorry you feel this way because you are amazing. You are keeping her alive and happy but also have to make sure you do good for your self. BC she can feel what you are feeling. Call me if you ever need or want to talk. Or just scream and cry. I’ll be here. Don’t give up. And don’t feel bad to ask for all the help you need . You are a beautiful, strong, amazing mother.
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Kathleen, When you have these days that you feel so overwhelmed and frightened and unable to do what you are doing one more day, just know there are so many of us– though you have never met us — following Hana’s story who are lifting your little family up in prayer and cheering you on. Many of us have also experienced seemingly unrelenting hard, hard times, but we go on, because it’s what we do! And you will too. Life will not be this way forever. Sending you love and sunshine from Florida. Anne (Terry Smith Anderson’s sister)
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