I got to hold Hana for a long time today – over an hour. It was so wonderful. I closed my eyes and just felt her in my arms and tried to burn it into my memory forever. I think Hana liked it too – she almost fell asleep, but she successfully fought it off. Her eyes kept rolling into the back of her head and she seemed like she really wanted to nurse. She eventually got agitated. Hana was agitated most of the day. Maybe it was more teething, but maybe not. She’s almost back to the way she was before this whole thing started a week and a half ago, but even then something wasn’t quite right, so still, something is not quite right. She kicked on her activity mat (we put it on the bed!). She refused to nap. I saw her heart rate rise and my own heart rate started to rise. I felt more like a “normal” mom, doing normal mom things for her baby. I loved it.

I went for a short jog again today. It struck me that I was doing something not related to our hospital stay. For thirty minutes, I got to be something other than the mother of a hospitalized baby. I also got to leave the hospital for the first time in about 24 hours. Paul and I also went to dinner. We need to. More than ever before. We need to make time once a week to regroup and just be with each other, to check in and make sure we are on the same page. We have to be a team, a good team.

I am trying to prepare myself mentally for the day when I have to sleep in a different building than my baby. The very idea tears me apart. You are definitely not allowed to fall asleep in the ICU rooms here. You are not allowed to sleep in the lobby or waiting area either. So you either have a Sleep Room, like we have, or you have to stay awake all night (they will kick you out if you fall asleep). We won’t have the sleep room forever, well, if things progress, we won’t have it forever. It is just not sustainable to stay up all night either. This is not a sprint, it is a marathon.

They started her on a new drug this evening. It’s supposed to eventually replace the Milrinone, but I don’t remember the name of it. One effect of this drug is it lowers the blood pressure. Hana’s blood pressure was going too low, just after she fell asleep. She looks so peaceful and comfortable, but I want to stay in her room, just in case. But I know that they are on top of it and watching it carefully. I know this. I know that I need to try to get more sleep, more rest. I think I am slowly catching up but it is still hard to get through the day without a lot of coffee. I need rest so I can stay in this marathon.

Today is the first day I did not cry. Sometimes, the enormity of it all would catch me and swell up in me and I could cry, really let out a sob, but I am too tired to go there. I am just too exhausted.



5 thoughts on “Agitated

  1. I am so happy to see the pic of you and Hana, and to know you had that much time to hold her! Also, how great it is to hear You and Paul are taking some big steps for alone time together, which is so important and probably really hard to do faced with this situation (actually pulling yourselves away just for a little bit). But so very healthy! Proud of you two!!! Hoping you have a good night rest!

    Liked by 1 person

  2. …my post above. Also I was just researching toys Hana could use , so happy to see she is able to use activity center:) makes me smile:) love , Suzanne

    Liked by 1 person

  3. So happy to see you and Hana together! The picture of you two made me cry with joy… I look forward to your posts and with trembling heart i pray that each new post shares more good news anout Hana’s recovery.

    I admire you and your little baby for the courage and strength! We have you in our thoughts and prayers. Sending you positive vibes and hugs and wishing you quick release from the hospital. Visualizing Hana and you on the day going back home together healthy and happy!


    Liked by 1 person

  4. I love this picture of you holding Hana! So happy to read that you got to hold her for a long time and that you and Paul are making time to be together. You are right, you need that time to be a team and support each other. You both are going through the same thing and very different things at the same time. Stay a team so you can recognize when the other is weak and needs some support. That will be so important for Hana too, to see her mommy and daddy spring each other and their love for each other and her. Love you all.

    Liked by 1 person

  5. Your doing great! Hold on to each other, there is strength in numbers! My positive thoughts and energy go to you many times throughout each day and night ! Kat this pic says a thousand words!


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