Last night Paul and I slept in Hana’s room. She fell asleep early and we didn’t want to move her to the Pack N’ Play in our room. Unfortunately, she vomited again around 5am this morning, about an hour or more after her last tube feeding. The bag that holds her milk and the tube that runs from the bag to her NG tube was full of air and I wonder if it was pumping air into her stomach. The pump is supposed to stop and beep at you that there is some error and the bag is empty, but this didn’t seem to happen. It’s just a guess on my part, what do I know? (Actually, I am surprised how much more I know than I think. Who knows the baby better than the parents?) But I think I am also hoping that her vomiting is being caused by something other than her heart getting worse. One unfortunate thing about the early a.m. vomiting episode was Hana pulled her NG tube out! We left it out for a few hours and I had to put it back in time for her morning meds. It didn’t go as “smoothly” as putting it in when we were still in the hospital.
Today Hana had to have blood drawn down the street at Kaiser. The first person who poked her to try to draw blood was unable to get anything. She called another lady over who seemed much more experienced. She was able to poke her again and get blood right away, but then the blood slowed and stopped. They almost had to poke her a third time, but then the blood started flowing. Hana was really crying, but she was a real trooper! The whole episode kind of wiped her out and she took a long nap. Tomorrow we go back to Stanford to see her P.A.C.T. team doctor. I am actually looking forward to it because I need more reassurance that she really is okay to be out of the hospital.
We are still trying to get ourselves situated and organized and in a new routine. I ordered some things from Amazon. I had to rent a hospital grade breast pump today. I just am not going to be able to manage with the one that I have and it takes twice as long to do half the job and I already spend at least three hours a day pumping (which is the only reason I have time to write this blog). There are lots of other little things that I am realizing will always need to be chased after – calling the medical supply company about order issues, calling our case manager about problems, etc. But I guess that is the same as paying bills every month – they are never “done”, they keep coming each month!
One goal I have for this week is to mount the cards that people have sent on a board. Many of them are hand drawn cards by other children. I want to hang it up in Hana’s room. I think it will be a warm reminder of all the people out there who care and are wishing her well.
Hana loves being outdoors. When she was fussy, we could go on a walk and she almost always would calm down. She loves to watch what is going on around her. Being able to go out and walk in our neighborhood has been one of the greatest joys of being home and out of the hospital. Not only are we able to say hello to friends and neighbors and spend time with our dog, Poppy, but Hana gets to be outside! (And I get to be outside).
Hana's Heart 
Thank you for continuing to share all this. I am happy that Hana is getting outside. You are very likely right that if there was air in the line it could make her bloated and nauseated. I don’t know if the ongoing issue with vomiting is that though. Eating takes so much energy! They might be able to modify volumes a little when you go to Stanford so that the work for the heart is less…just a though.
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Sorry, I meant just a thoughT
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Wow the pics are great! She really looks good!!!! So happy to see this! Glad you get to see the team tomorrow, they will reassure you. ❤️✌️🙏
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I love the pictures and seeing you in them too Kathleen! At school when the kids get too much air in their belly from their pump they do get bloated and sometimes start burping. A lot of them have tubes in their belly though so the air can be vented out or have certain tubes that do not really allow for vomiting, so we don’t see it as much… But I think you could be on to something with the reason for the vomiting. Or maybe they need to reduce the flow of the feed over time? If you are pumping a lot, I recommend getting a pumping bra. You can sort of stick the pump through the holes and wear it hands free. It looks like the most crazy thing you ever saw but if you are pumping so much at least you can be doing other things 😉. I miss you so much and wish I could be down the street and come see you and help. Love and prayers to all. Tell mom that everyone from school is always asking how Marie’s grandbaby is doing… And that we have had 4 snow days and 2, 2 hour delays! Back to 50’s this week. 💙💙💙
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Thank U Kathleen for all the continued updates from the day….I am constantly refreshing and trying not to text or call too often…so happy that everyone is able to get out for fresh air, excercise and seeing friends….I know how huge that is! I am also pleased that you will be checking in today with the team at Stanford as I am sure it will b positive and give u all reassurance !!! U r doing a fabulous job…as always, U all r in my thoughts and prayers today and every day… love the pics…Hana looks great!!! Love and kisses to all!!
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Wish I was there. I’m glad you’ll see the PACT team today. I share your feelings about Hana’s Stanford appointment. Everyone there was so devoted and caring. They inspired confidence, but the reassurance is a lot more elusive. It is nerve racking having seen Hana at her worse, knowing how sick she is, and being 3,000 miles away. Worrying is useless, knowing that so many hold Hana, Paul, and Kathleen in there heart and prayers carries the day. Maybe it wouldn’t be so bad if I had seen a least one smile before I left, I doubt it.
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Boy I know what it’s like to be poked a few times because they can not get the blood!! Been there more than a few times lately. I cannot imagine a little baby having to be stuck more than once at a time. Luckily my nurse is good at it so I don’t have the problem too often, and I sure hope Hana doesn’t either!! No wonder she cried with that one!
She looks great in the photos and I’m glad you can get outside with her!!
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Boy I know what it’s like to be poked a few times because they can not get the blood!! Been there more than a few times lately. I cannot imagine a little baby having to be stuck more than once at a time. Luckily my nurse is good at it so I don’t have the problem too often, and I sure hope Hana doesn’t either!! No wonder she cried with that one!
She looks great in the photos and I’m glad you can get outside with her!!
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Kathleen — just sending love and looking forward to hearing what the Stanford docs have to say.
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