Sometime last week I thought Hana was doing some strange belly breathing while she was sleeping. She also had a mild cold and was a little congested so I thought perhaps it was due to that. But the cold went away and the belly breathing did not. I thought maybe it was just due to deep relaxed sleep, but then, over the last couple of nights, she has been more restless, mostly during her two night feeds. She’s been throwing up too, although not more than once a day and I thought it was still her just getting used to the new pediatric formula. Yesterday she threw up twice.

Today, while she was napping I took a video of her breathing. It just wasn’t sitting well with me. I called our Stanford Nurse Practitioner and left a voice message. I finally called again several hours later and finally talked to her. I sent her the video of her breathing during her nap. She wanted me to bring Hana in the next day (Tuesday) and we made an appointment. She told me to give her a dose of Lasix and then another one in the middle of the night.

A couple hours later, Hana was getting a tube feed and I felt like her breathing was really fast and she felt sweaty. So I called the nurse practitioner again even though it was 7:30 at night. She actually answered! She asked me to take another video of her breathing and send it to her. I sent her another video and half an hour later she called me back. She said she sent it to Hana’s cardiologist who looked at it and agreed that it looked fast for a baby her age but he felt like she didn’t need to come in any sooner than tomorrow. Of course, if something changes then we need to bring her in sooner.

So it sounds like maybe she needs to get more Lasix to offload her heart, which maybe can be accomplished adequately with oral medication but if not, she may need to be admitted to the hospital for IV Lasix. Or, all of this could be symptoms that her heart is worsening.

Today I cried after taking the first video. I feel like I generally stay positive, but sometimes it really gets to me, usually about once a week. Then you just have to let it out or it will eat away at you. Sometimes I have ugly thoughts, jealous thoughts, bitter thoughts – especially when I hear my wonderful, amazing mom friends (please don’t take this the wrong way) complain about something going on with their baby and I think, “You have no idea…” I have those thoughts because, at that moment, I feel inferior and scared and jaded and sad. But mostly, most moments, I feel lucky and honored – to have Hana who brings us so much joy. And really, somewhere out there a mom whose baby is really, really sick might hear ME complain and think to herself, “You have no idea…”

All over, at this moment, there are moms and dads next to their children who are suffering. For them and for their children, I wish them peace and comfort. For myself and Paul I wish for us to have peace and comfort. For my sweet baby Hana, I wish for her to have peace and comfort and so much more. For all the moms and dads out there who have something to complain about, I wish them peace and comfort too!

Oh and on a bright note, Hana didn’t want to go to sleep tonight because she wanted to keep practicing her walking!




3 thoughts on “Breathing

  1. Oh my goodness. I am still amazed at how well you are doing with Hana! You spotted something not right and took care of letting the doctors know via video!
    Well done.
    You have all the right to think whatever you want, feel whatever you want and cry whenever you want.
    And I heard her Grandma, my Aunt Donna, was out there when Hana started walking!

    Liked by 1 person

  2. I can only partly imagine how terrifying and saddening it is every time you notice a change or inconsistency in Hana’s health or behavior. I got upset (and cried) the other day when talking to Henry’s doctor on the phone about how he recently stopped talking (a mystery, probably no big deal, we are getting it checked out). And our situation is not yours. I am thinking of you. I hope this is the most difficult thing you ever encounter in life, because it is surely a big burden to carry.

    I am glad Hana is working on her walking! What a little champ.


  3. Hana’s spirit can’t be stopped it seems…..wanting to continue practicing her walking, just made me smile. Clearly your observational skills are on high alert for your baby girl……

    Liked by 1 person

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