Hannah passed away at 10:10 pm on Sunday night, December 4th, in my arms after a weekend surrounded by all of her grandparents, aunts, uncles, cousins, and good friends.
After last night’s scare, Daddy and I were so concerned about Hannah’s breathing and second-guessing our decision to put her on a vent to help her breathe. Apparently that decision is moot at this point.
Our hospice coordinator (who is our lead nurse) came to visit today. We talked about how things were going in detail these past couple of weeks as she was giving Hannah a thorough physical exam. We talked a lot about her breathing, especially the shallowness and increased apnea.
Then she asked a lot of questions about Hannah’s feeds. We told her how she was only at about an ounce of formula an hour for about 18 hours a day (about 700 calories a day), and she wasn’t really doing well with that anymore. We told her how her stomach always seems to get distended, and we end up having to give her 1 to 2 enemas every other day to flush her out.
I could tell she wanted to say something but was very hesitant, so I finally said “Just say it.” She said, ”there comes a point when feeds become more harm than good. We are at that point.”
She went on to say that her bowels aren’t moving along anymore, which is why we are having to do enemas all the time (most of the time it takes two). She also discussed how the food is just sitting there in her stomach, which is why it gets so distended so quickly, push up against her lungs and…and affecting her breathing.
My heart sank. I didn’t expect this to be a problem. In hindsight, I can see she is completely right because it all fits.
She is at an ounce over an hour right now, do you realize how little that is?! She only gets an ounce an hour, and she can’t tolerate that? Such a little, little amount, and it causes so many problems right now.
I told her that I couldn’t stop her feeds. Making sure Hannah is fed is one of my primal responsibilities as a mom. You don’t NOT feed your child. I told her maybe I could compromise at lowering them even more, maybe a half-ounce over an hour. After she and our nurse explained more to me, I knew in my heart that no matter what they said I wasn’t going to do it.
If we did this, we would lose her in a matter of days. But I needed to talk to Daddy when he got home before that decision was made.
After the hospice nurse left, I went in my room (leaving Hannah with our favorite nurse) and just laid there, dumbfounded and in tears. Angry that I have to make this decision because I don’t want to make any more decisions … I just want whatever is to happen to happen. I don’t want to make Hannah leave us earlier than she is ready to, but I also can see, so painfully obvious, that her body just can’t tolerate it anymore.
But now Hannah is suffering because of it. Are we really causing more pain and suffering because we are forcing her body to eat when it is already starting to shut down?
About an hour after this conversation, I went to pick the kids up from school and went to run some errands. I had to get out of the house and clear my head really.
I got a text from our nurse saying that she tried starting Hannah’s feeds again, and after 5 minutes, Hannah started writhing and tearing. She stopped the feeds. Tried again later in the evening, and the same thing happened.
I never put two and two together, but this past week or so, most of the tears and uncomfortableness is when she was on her feeds. Now that it was brought to our attention as one of our primary problems, we are now starting to see what the hospice nurse so painfully had to tell us.
She was on feeds longer yesterday without as much break as we usually gave her in between, and she had the major scare last night with her breathing and tremors, her stomach being so distended and tight (after having multiple blowouts from her enemas just a few hours earlier)…coincidence? the reason?
Hannah is sleeping comfortably right now… not on feeds. I am so desperate to hook her up and start her feeds, even at half ounce over an hour. I just can’t NOT feed her.
But if I do that, if I start her feeds at even that low of a rate…am I really causing more harm than good?
We had a very emotional scare with Hannah tonight.
It was only minutes after we had put Ethan and Abby to bed. I had noticed Hannah waking up, so I went to grab her from her bed for some cuddle time. The weird thing was she was really stiff in her lower body, something we hadn’t seen in many months (before hospice).
As soon as I sat down with her on the couch, her breathing started getting very erratic, very shallow. Her legs started having these tremors or shaking spells which we had never seen before. They were strong too. I couldn’t even bend her legs during them.
Then the worst part came. She started struggling in her breathing. Her feet were freezing, and she was wearing socks. Her stomach was also very hard, which was very unusual because she had an enema a few hours early and got rid of everything and then some.
Daddy and I got very nervous. We called our hospice coordinator, and she had us give Hannah a dose of a med we no longer use, and fortunately that seemed to help knock out the tremors and get Hannah back to sleep. But her breathing remained really scary.
Daddy and I thought that this was “the end.” As I was sitting there crying and cradling Hannah, I realized that no matter how strong I say I am about “Hannah’s plan” and everything, I am just not ready to let her go. I’m just not.
I even had second thoughts about not putting her on the vent. She clearly needed to be on a vent at that point. Daddy and I talked about it, and we both had our moments. But even though I want to keep her around as long as possible, it just isn’t fair to her to have to go through all of this. To be vented, to have her body manipulated even longer just so I could have more time with her…I just can’t be that selfish. I want to be, I do.
After a really tough 2-1/2 hours, Hannah still was breathing really shallow, and she was very apneic. Every time she would have an apnea spell that lasted more than 10 seconds of not breathing, I kept thinking, “is this it? Is it going to happen tonight? Are we going to lose her tonight?” I must have rubbed on her chest a few dozen times just to get her to start breathing again.
Daddy and I were both exhausted because those previous couple of hours brought out a lot of tears and tough discussions, nothing we hadn’t had before really, but when it seemed like we could lose her at any minute… well, they are just harder conversations and more real. When it comes down to it, we are both really, really scared for “that moment” to actually happen.
Daddy, completely exhausted and having to work tomorrow, went to sleep around 11:30 pm, and I ended up putting Hannah into her bed so we could hook her up to the oxygen and humidifier. I crawled into bed right next to her, held her hand, and just laid there crying next to her.
I must have fallen asleep in bed with her because I woke up an hour later. Her breathing was back to the way it was earlier in the day, before that episode last night. Her stomach was nice and soft, her feet were warm, and her muscles were not stiff anymore.
It is now 3 am. She has been back to her ‘pre-scare’ state now for over 2 hours now.
I am so not ready to lose her. But gosh, to see her in so much distress … ugh…
Thanks to a wonderful blog reader, I now have the actual clip of the NBC news piece that was done on Hannah on Thanksgiving. It includes the promos and teasers that were also played during the day (at the beginning).
Also, Mitch, the wonderfully caring man instrumental in getting us this interview and helping us promote World Rare Disease Day in February, got NBC 3 to put the separate clip on their website. I like the heading – Little Miss Hannah Will Make You Smile.
I’m having a really rough night tonight.
It seems like so many things are setting off the tears tonight. This is hell.
I know how hard this has been on Daddy and me. It is like we are stuck in between grieving and fear.
It would be one thing if Hannah was able to be awake and even a little bit aware of anything around her – us, her favorite music, holding on to her little Minnie Mouse. Spending her last days with us knowing that she is surrounded by love. Even just some movement when we talked to her or touch her. The only time she is awake, which is maybe a total of 15 minutes a day now, is her completely out of it. When she is somewhat awake (yet still drugged heavily), we see the tears well up in her eyes and her body twitches — just kills me, and that is our queue to knock her out again.
We don’t even know what that tear means, whether it is a reaction from pain, sadness, or even involuntary. All I know is when we see it, it feels like a knife in our hearts.
We don’t even get a glimpse of our Hannah’s personality. Nothing. I keep hoping and praying that maybe “this time” will be a breakthrough, and I will get some kind of reaction … even a little one. But nothing. It is as if we only get to keep her body with us, not her smile or personality.
And that is what makes this so damn hard. Our family has been grieving for her for weeks now. Just waiting for that moment she stops breathing, so scared for it to come. But knowing that is right around the corner.
We are ready to deal with it. We don’t want to, but we know this is not a life we want for her. No quality of life at all.
It is like our loss is just dangling in front of us – teasing us. Like, “ha ha, I’m going to mess with you.” Because that is what it is – we have lost our Hannah. The beautiful little girl sleeping in front of me is really just a shell of who she was, one whose body is slowly failing. It is still her smell, her feel, but that is all we get now. Sometimes I am so thankful to still be able to cuddle on her and run my fingers through her hair.
But sometimes, as hard as it is to say, sometimes it really just isn’t enough anymore.
And what is even harder to deal with is how it is affecting Ethan and Abby now. Oh gosh, poor Abby. Because she is more aware and dealing with what is going on with Hannah than Ethan (who is not really dealing with it at all yet), it really is affecting her in so many ways. School, social activities, life at home…
Seriously, they are living their lives with their dying sister in the family room, also just waiting for her to let go, yet probably not really knowing how this will affect them. Yet, we still watch TV, have meals together, do homework in the same room as her…keep going on with our daily lives. How do they process all of this?! Our hospice social worker meets with the kids each week, but I think this is so much bigger than just this.
Then I feel so incredibly guilty for feeling this way. This is my Hannah. This is my baby daughter, my miracle. This is all I have left of her yet I complain about how hard it is on me and the rest of us. What about her?
Damn, I miss her so much. She’s here, I know. But she isn’t really here anymore. I miss her, and I would do anything for just something – a smile, just something to let me know she is still here with me.
I’ve got such a headache. I am going to crawl into bed with Hannah and snuggle with her. Maybe, maybe by some miracle, tonight I will get a glimpse of my Hannah.
Yeah, right. Probably not.
The NBC 3 news piece is now online.
I’m not sure how to copy it on here because it is actually the entire 30-minute broadcast, but Hannah’s piece starts about 9:20 minute mark or so. She is also the beginning teaser of the newscast.
If someone knows how to take this off their website and chop it down so we can upload it to YouTube, I would be very grateful. I don’t know how long it will be on their website. It is the 11/24, News at 5 pm broadcast. Here is the link.