Hana is much like her normal self today. She still may be overtired from lack of sleep (two babies in our room cried most of the night) but she seems to have an easier time sleeping through the noise than me. I do think she is really bored with this hospital bed.
Today’s plan is to supplement sodium because it is still low. The attending doctor yesterday was opposed to this so now it makes me nervous that today’s attending doctor wants to start it. They are decreasing her Ativan by 10%. They are starting her on a beta blocker, carvedilol. They are keeping everything else the same as yesterday. She did have a high heart rate/arrhythmia but since it went way down when she is resting, they don’t seem terribly concerned. She didn’t really gain any weight yesterday and we need her to gain it, she’s lost about a pound since all this started (she only weighed 15 pounds). She also needs to prove she can gain weight before being discharged. Yesterday the occupational therapist came by and she made sure Hana could take a bottle and swallow safely. So, today we will again give her a 1oz bottle (yes, she took the bottle, no problem!). They drew blood for genetic testing, we won’t have results for two months.
We got a cottage yesterday here in Palo Alto. That will help Paul do work remotely and avoid trips all the way into the city. It’s a beautiful space, we are very lucky! I started opening more care packages and cards and started crying – a lot, so I had to stop. More on this later…
3 West is the pediatric cardiology unit on the regular hospital floor. We are in a room that contains four patients – and they are all babies. That’s right, four sick babies all trying to rest and heal. It doesn’t work. The nice thing is you can sleep (actually, you are expected to be with them) in the room. I actually think I got more sleep the night we were life flighted here. Or, I could say, I don’t think I got more than 15 minutes of sleep at a time. It’s worse than bringing home a newborn from the hospital. There was always one baby crying, or an alarm going off or staff talking loudly in the room or noise in the hallway (because someone left the door open), or someone snoring. One patient clapped incessantly. That same patient was moved out of the room in the middle of the night. Then housekeeping came in to cleanup and bring in a new hospital bed.
Hana did not sleep well although she thankfully slept better than me. It was nice to have her so close. I really miss our ICU nurses who took such good care of her. They do extraordinary work. I’m not saying that the nurses up here aren’t good, I like Jeffrey, our day nurse, but our night nurse wanted to weigh Hana at 4:30 in the morning. I asked her to wait until at least 6:30. I thought people would be more concerned about patients getting rest, maybe by lowering their voices a bit when a baby on the other side of the curtain is trying to sleep, but a good number of people seem completely unaware. I’m going to wait another day before I say something, maybe our first day here was an anomaly. The other thing I’m not used to are nursing assistants and residents. There were only fellows in the CVICU, no residents. I think having the CNA’s are good because they will hold or console babies when no parents are around.
Hana is the same as yesterday. The only changes they are making are to decrease her Ativan and decrease her volume if breastmilk but increase the calories by fortifying it. She’s been kind of cranky, probably because she is overtired. I know I am! One of the heart failure/transplant doctors said, best case scenario, she could be discharged as early as next Friday! It will still be many months before we know what course all of this will take, but for now she has been declined for the transplant list. (That’s a good thing!)
It’s been a very hectic day. Hana woke up pretty happy and squirmy and ready to bust out of the ICU. She got her arterial line out of her right arm, so now she can grab things again with her right hand. Then they moved us upstairs to the step down unit at 3 West! We moved all of her accumulated stuff (toys, blankets, pictures, books) and we also moved all of our stuff out of the sleep room. They had to do the handoff from ICU to the step down unit. Then I had to run across the street to meet with housing because they are trying to get us in a guest cottage here in Palo Alto.
I will try to update more later.
It was two weeks ago today that all of this started. I haven’t been home since going back to the pediatrician’s office. If you had gone to my house you would have walked into the middle of my day, my “life”. All of it interrupted so suddenly. It’s amazing the things you can let go of, and quickly too, when you really need to. So, why can’t we be more like that more of the time? But I had collected a clutter of grudges, worries, obsessions, concerns, material things. Some of these things are just on hold until this time in my life passes, but some of them are better left forgotten.
Hana is having a great day. She no longer has the nasal cannula. She’s off the Milrinone and dopamine. They might take her arterial line out today. She could, in theory, go onto the hospital floor, but they still want to get her Enalapril dose up without her blood pressure dropping so much. They are talking about moving her tomorrow! She is kicking and trying to sit up. She’s being stubborn about naps. She is about the same as two weeks ago except that she no longer has a cough (well, she is also getting all her meds and food through her feeding tube)! One thing that hasn’t changed is her heart. They did an echocardiogram yesterday and it showed no change from two weeks ago. Her heart is still enlarged. That’s good in that she is not getting worse, but it would be nice to see improvement, of course.
They lifted the isolation restrictions around lunchtime so we no longer have to wear gowns, gloves and masks!
Today we were supposed to return from our trip to Hawaii. We were scheduled to leave on Friday the 13th. Today they are continuing the Enalapril (the drug I couldn’t remember from yesterday) twice a day. She seems to handling it better than yesterday. They are decreasing her Milrinone and weaning more her nasal cannula. She is still getting Ativan for her agitation. They stopped the Heparin and started aspirin and iron. She is still getting Lasix and Aldactone. The goal is still to get her on oral medications. They even talked about moving her to the regular hospital floor as early as the end of the week.
It feels positive. Do I dare get my hopes up for a full recovery? Is this going to end up no big deal? Did I sound the alarm too soon? I know the answer is “NO!” But part of me doubts. “Never cry wolf!” has been a secret life motto for me, even when there is a wolf. I try to take on the wolf alone, it often doesn’t occur to me to ask for help, but sometimes it is also my pride, because I think I am stronger if I can do it by myself. Maybe that is true sometimes. One thing all of this has taught me is that there can be strength in numbers too. All of you – the people reading this, texting, calling, emailing, thinking, praying, meditating, has given me strength. It has given us all strength. The course of all of this is still unknown and, more relevant, the state of things almost two weeks ago was very, very bad. That was the wolf. What is his fate?
Here is Hana playing today:
Hana was up at 5:30 a.m. All that sleep training is down the drain! It’s nice to actually think about things like that again. Other than awakening too early, Hana is having the best morning yet. I even got her to smile! It’s the first smile since all this started almost two weeks ago, in February 11th. I am still feeling cautious. Things changed so quickly then, it could happen again. I don’t want to forget to just be in the present moment.
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.
My dad left last night. I can’t imagine a more difficult goodbye. My mom is still here almost two more weeks. I don’t know what we would’ve done without them.
It took Hana a long time to get to sleep last night, it was midnight before we got to bed. She was still sleeping when I got up at 6:30 this morning. When she did awake around 8am, she was agitated and wanted to sit up. She was obviously still tired. It took a long time to get her to take a nap (which lasted less than an hour). I am so tired. We all are.
Hana seems like a teething, overtired, bored baby agitated by all the restrictions of tubes and wires attached to her. Today they will continue to wean her oxygen flow (she is on 2L). They will try weaning (I don’t know if they actually wean or just stop) her Heparin and start her on aspirin. They still need to get her diuretics right before weaning her down on the Milrinone (I suppose they need her electrolytes better balanced before messing with heart medication). She is getting 40mL of breastmilk an hour, which they will start fortifying tomorrow (for more calories without the volume). They talked about doing another echocardiogram. She has a standing order for Ativan is she can’t get settled. They are giving her Tylenol every six hours.
I heard the heart failure/transplant doctor say that 60-70% of dilated cardiomyopathy cases like Hana need a heart transplant within four months. Some percentage of those will need a heart transplant later in life.
It turned out to be a teething day. I’ve heard some children teethe with no problems, but this was not Hana when her first two teeth came in and it wasn’t her today. On top of that she can’t really get in the comfortable position she wants to be in. We spent all day trying to entertain her with toys, singing, books, whatever worked – until it didn’t. One doctor called it a “puppet show.” I’m pretty exhausted, as I would be with a teething baby. But overall, things were better today (even with a tough morning). I’ll take it!
They stopped the high flow and gave her a regular nasal cannula (I hope I’m saying these things right). They increased her feeds (poor thing was so hungry and trying to suck on everything!). They are continuing to give her Tylenol and Ativan. I got out of the hospital for a short drive to downtown Palo Alto to quickly pick some photos at Walgreens. I taped the pictures up in her room. They make me happy to see them!
Hana woke up early again (3 a.m.). Then she became agitated again. I was worried it was going to be a repeat of yesterday. They gave her some low doses of Ativan. Then they gave her Tylenol. She still seemed very agitated but after two hours she had “calmed” into something more like a teething baby (she has two teeth already). Now she is playing and kicking and fighting off taking a nap.
This morning was stressful, but the plan is to reduce her meds again and reduce the high flow to 4L. I hope today is better than yesterday.