Yogurt and Unicorns (and Prunes too!)

Today started out great. I sat Hana down to eat some breakfast together, we were having yogurt, and she was practically licking her fingers clean. She was definitely licking the yogurt off of her tray, she loved it so much. I was so happy that she loved yogurt so much! Then things turned bad. I can’t even remember all the things that caused it to be bad because this morning seems like three weeks ago. I started her first bolus feed early because I wanted her to finish it before her morning nap, to see if that would help with the vomiting. I was feeling stressed. It can get stressful when you are trying so hard and it feels really important to be successful and things are slipping away. I cried on our morning walk when I thought she was going to vomit. I’m on the verge of tears a lot these days.

Well Hana kept her breakfast down, and twenty minutes later I gave her her morning medication, a little on the late side. Not two minutes after I finished she vomited all over the place. All those meds came up immediately. Luckily there were many hands on deck to help out. I spent twenty minutes on the phone with Stanford coming up with a new plan. I gave the Enalapril thirty minutes later followed by her Carvedilol fifteen minutes after that. The rest of the meds we decided not to give again. We also decided to spread out some of her medications over the day, since I am already giving meds three times a day. Now, aspirin, Aldactone, iron and her second dose of Zantac will all be given together.

I also contacted Hana’s GI doctor and dietician about doing something about her first bolus feed of the day. The GI doctor suggested lowering the volume, decreasing the rate of the feed or giving her two smaller feeds in order to giver her stomach a break first thing in the morning. Tomorrow I think I will try giving her half her morning feed and then waiting an hour and giving the second half. Hopefully that helps.

Today we got some very excellent help and excellent dinner. But the biggest surprise was the new hat. I wrote about Hana’s lost hat a couple days ago and we are extremely fortunate and grateful that a replacement hat is in the works, but today we got a gift from Hana’s best girlfriend, Lilly and its a new hat. Its not just any hat, but a Unicorn hat! We are so grateful!

Our magical Unicorn Hana even topped off the day by eating tons of prunes! Okay, I realize that probably sounds terrible, but the prunes from Plum Organics (and you would expect judging from their name) were very tasty. She also did not vomit at bedtime! (She was, however, very fussy after eating the prunes, I’m cringing over what might happen next.)

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6 thoughts on “Yogurt and Unicorns (and Prunes too!)

  1. She is so flippin adorable! You are doing a great job juggling all of this and it is clear that it is so hard but be gentle with yourself and remember to breathe. So glad you have wonderful people to help you. Much love to you three!

    Liked by 1 person

  2. OMG that hat 👍🏻😄 Love it! She is loving those prunes! Wait till you get a (load) of those diapers! Pun totally intended 😝 😁 they are so sweet, babies love’em. A lot of Moms feel the CRUSH of weight to be the supermom… those who “appear”to achieve it are full of well, prunes! One of my favorite mantras is this. “Martha Stewart does not live at my house!” God does want you to enjoy the beautiful time spent loving Hana! They are only little for such a very short time…❤️✌🏻️🙏🏻

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  3. You are so beautiful Hana… And you are fortunate to have such wonderful parents who love you so much
    We pray in the mountains here in Oregon for your health and for strength for your mom and dad and all those all involved in your care. Hugs.

    Liked by 1 person

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