Sunday, January 30, 2011


holding my little lily so will be short. we are hanging in there.
The hospice nurse asked me the other day "are you able to cry when you need to?"
i said "oh, sure, you know."
But turns out, when I need to, I have no choice.
I'm glad it's not every day I need to just fall apart and get all good and puffy. But I'm glad I can cry when I need to.


Friday, January 28, 2011

A Lightness of Being

Is it ridiculous that thinking of Hospice brought that phrase to mind?
We have been in hospice care for less than 48 hours, and I am in love with it. Making the phone call was difficult--my voice shook, I felt like the operator should burst out "oh you poor thing!" but she didn't.
Two nights ago Bill the night nurse came over and had us sign some papers, looked over Lily and pronounced her pink and precious.
The next day the day nurse, Sunny, came over, with the social worker. We discussed Lily, discussed staying out of the ER, and what might be done to make sure that happens. So throughout the day, I had five new tanks of oxygen delivered, tender grips for those slippery cheeks, tubing, a chaplain for emotional support, and our very own suction machine. No more 3 hour trips to the doctors for a good deep snuffing!
I love the idea that we have someone other than 911 to call in the night if Lily just doesn't seem comfortable. I love that, in that case, we have medications available and on hand to help her calm down. I love that all our needs--from oxygen to feeding supplies to "someone to pray with us" is available at one number 24 hours a day.
I just feel relieved.
It has really helped me get down to the good stuff--enjoying Lily. Taking a long nap with her in bed after an exhausting photo shoot with usually quite photogenic and camera loving Ella. Bathing, patting her, and loosening her goo and then being able to get in there after it! (tmi?) I just feel supported and taken care of and it is so, so comforting.
Last night I fell asleep on the floor at 7:20 and didn't wake up until Zar drop kicked me up to bed at 11. I was tired from the busy day with all our visitors, tired from taking care of three babies (one of whom screamed rudely at me all...day...long...) and tired from the slight illness I picked up after being barfed on two days ago. But also I think I was just relieved, and relaxed, and feeling like it was a safe time to finally just let go and briefly let down my guard.
Although I apologize to Zar for not responding to any of his questions, and not helping get the girls in bed, and not remembering all of this the next morning.

Wednesday, January 26, 2011

Apres puke snooze...

We had a rough night. Lily didn't want to keep her sats anywhere near an acceptable range for more than a few minutes. This was a combination of the monitor, wriggling around, the tender grips that just won't stick well on those lotioned up cheeks, and of course, Lily. So although it was not so dire a situation as the numbers would have you believe, there wasn't much sleep to be had.
Went to McDonalds (again) because Ella was asking for the Park...and with the wet and cold back in town, that means Playland. During lunch Lily's doc called to discuss her echo that was supposed to take place tomorrow. There was some question as to whether she was healed up enough from her last PICU admission. I said she really didn't have any sort of infection at that time, but now, on the other hand, she is junky and coughing and I don't know whether it's from a virus or whether more fluid is backing up into her lungs. Either would be totally possible. We decided to give it a few days and see if she improves, and if not, decide whether to go ahead with the echo. I'm not even sure we want to put her through even that. I hadn't really realized that with it being a sedated echo, she would be intubated, something I wanted to be done with...but is it okay if it's for diagnostic and not heroic purposes? And I guess you need diagnostics to even get to heroics. There is no right answer. I don't want her to have another iota of pain in her life, but sitting around waiting for heart failure isn't exactly pleasurable. I decided it's time to call hospice.

Ella had been increasingly clingy today. About ten minutes after talking with cardio, she demanded a hug, and then wouldn't let go. She was sitting on my lap while I talked with a friend when she announced "I wanna feel better!"
"You want to feel better honey?"
"BUUURRAAAAUP".
So we pushed around the vomit with a rag best we could and headed home.
Our clothes are in the wash and Ava is napping, Ella is snoozing/watching Minnie, and tonight hospice is coming over to assess and admit Lily. I really think it will be a great resource for us, but it's still a hard step.
Deep breath. We are all going to be okay.

Tuesday, January 25, 2011

Let it Be

We've been staying busy and happy these past few days. Get togethers with friends, almost an entire church block, two awesome girls nights out, (and the boys got one too), a yoga morning, and we even made it to the park yesterday for a sunny warm winter day on the swings.
I'm trying to take a different attitude to our current situation. (Thanks Aunt Carolyn!) I want to look back on this time and say "Remember that cozy special winter when Lily was with us? Remember how we just took it slow, hung out together, did fun things with the girls, and focused on each other?"
And so I'm focusing on just being well. Friends, good food (and a little junk), exercise, reading, taking deep breaths and letting Ella dump out her sock basket every 20 minutes. Only it turns out, if you leave the socks all over the living room floor for the day, she only dumps them out once!
As for Lily, every morning while the girls eat their breakfast I fill up the baby tub and give her a warm bath with coconut oil for her poor sensitive skin. I massage her head and brush her hair, massage her limbs and thump her back to loosen the goo. I dress her in fleecey footie jammies and hold her out for her sisters to kiss. It's a sweet and quiet few minutes.
With three little girls it's not always serene around here, but we have our moments of zen.

Friday, January 21, 2011

Alternate Reality

Bowling. We went to see Lily's pediatrician today. Lily started satting low (as in, below 80) this morning at 6:30. Thought maybe she getting ready to go. Instead found she was full of boogers. Salined her and suctioned her (via bulb syringe) and decided to take her in for a good suction before the weekend. She's got some goop in her lungs. Awesome. The other girls have been had super mild colds, I think, and of course for Lily this is a big stinkin' deal.

On the way to the doctor's office I was half listening to NPR, on which they were interviewing a woman about video gaming, something I have zero interest in. This woman was a busy professional and also was very into online gaming, and had written a book about why gaming is really a good thing, and makes us into better humans. Or something. Her argument is that, rather than being relaxing, video games offer POSITIVE STRESS, that is, stress we choose, and makes us perform to our fullest capabilities. We work harder. We collaborate. We notice other's strengths and use our own to their greatest potential. We are focused, invested, and at our best.


This sounds ridiculous as I type it, but I found myself thinking that I am exactly in that place. I didn't exactly choose this stress, but I didn't say No when it came around, and I could have. I'm not saying that having a child with a terminal illness is a game, but it is an alternate reality, with different rules, and different values, and different locations and outfits and weapons. I am focused. I am being careful to care for myself, my family, and what needs to be done and letting the rest fall by the wayside. I am gaining strength and optimism from others who have traveled this road before. Yes, my house is more of a dump than usual, I haven't been to work in a couple weeks, I have two outfits I wear constantly--my "going out" outfit and my "cleaning/yoga/playing blocks" outfit, and both have stretchy waistbands, and it is what it is.


And I'm just doing what needs to be done. And I'm not relaxed. But I'm not out of my mind with grief or stress or depression either. Once in awhile I seem to "wake up" for a second and want to scream "THIS IS CRAZY!" THIS IS SO, SO SAD!!! WHAT AM I DOING???" Kind of like people probably do after spending hours gaming online. But I wouldn't know. I'm not a gamer. I'm just a mom with a baby who is dying. WHAT?! DID I JUST SAY THAT?? THIS IS CRAZY!!! THIS IS SO, SO SAD!!!

(insert clever reference to some sort of online game here.)

Wednesday, January 19, 2011


Usually when I take pictures of Lily I get faces like this:Hmph.
So this afternoon, when Ella started throwing her entire toy box all over the room AGAIN, and the stupid cell phone insurance company sent me ANOTHER defective phone, and I was wondering how we manage to produce an entire load of dirty laundry EVERY DAY...it was quite a gift to walk in on Lily having a happy conversation with Tigger.

Oh hi Mom!
With her monitor not on she honestly seems to be doing a million times better than ever before.



Tuesday, January 18, 2011

Endure All Things


We went back to the ER last night. Lily was holding her own on 1 liter, then went up to 2. Then needed 3 and that didn't seem to hold her. We called some friends who came and helped Zar give her (and I) a blessing. And then we went to the ER. I just felt like we should go.

Nothing was actually "done" to her. She was listened to extensively and that was it. We came home 4 hours later, but I'm glad we went. Here's why.

Last night I was at the end of what I could endure. I felt like I was watching Lily die, and I was terrified. I was afraid her pulmonary hypertension was getting a million times worse. I was afraid she was shunting blood all over the place. I was afraid we were nearing an "end of life" situation. I was right. And it's okay.

Lily is mixing oxygenated blood with oxygenated blood and sending it out through her body, so yes, her sats are going to be lower. This is because her pulmonary pressures are getting higher. Surgery would be unlikely to help, and it would be very risky and difficult and painful. Maybe meds might help, and we may give those a try. But she is comfortable and cozy, and as long as she stays that way, I'm okay.

We were advised to crank up her oxygen and just leave it. Don't even monitor her. (I can't do that, what with Ella turning the dial down, and the concentrator randomly turning off occasionally) but we turned down the limits. And once we got home last night, we all slept soundly.

We are going to go back in for another echo and make sure we are correct, and see what we can do to keep her comfortable. But at this point we aren't planning on taking any extreme measures.

Over the years, I have often said "THAT would be the WORST." I said it reading "Welcome to Holland" in my first week of Nursing school. I said it looking at clinical pictures of birth defects in class. I said it when I heard that a woman in our neighborhood was pregnant with a baby with no chance of surviving past birth, and she had chosen to carry to term. I said it when I was at an appointment with infant Charlotte and saw another baby her age on oxygen. I said it about kids who required feeding tubes. I said it, knowing it would happen to us, when I saw the obituaries of other trisomy kids I was familiar with. I said it when I read the story of a family who had lost one child, and then lost ANOTHER, to the same diagnosis years later. I said it when I thought about spending weeks in the NICU. I said it, over and over again, when I thanked GOD that Charlotte never had any (confirmed) seizures. And I said it again, after Charlotte died, when I thought of the alternative to her quick passing--that she would linger, and decline, and horror of horror, go into heart failure. And you all know what happened weeks, months, years after I made those comments. And what is to come.
I'm not going to say that anymore.


I would never suggest that choosing not to take heroic measures is the right thing to do for every family in our situation. In fact, many would consider it "heroic" to send Lily to the NICU that first day, or place a g-tube within weeks of birth, or have Charlotte get extensive skull surgery at 8 months. But those were all the right things to do for my kids, and I knew that going in. But this time, when the doctor said that surgery would be unlikely to help, and that her pulmonary hypertension is intrinsic to her chromosomal issue and not to her PDA I knew he was right, and I was somewhat relieved. As much as I want the miracle surgery and the short, precious, magic years with a sweet and perfect child with special needs, this time it's not meant to be. And I know that this...this isn't the worst.


Monday, January 17, 2011

Okay. I'm going to vent a bit. I might be a big negative.
I haven't blogged in a few days because it seems every time I get it in my mind to do so, something happens that changes our game plan and I have to rethink everything I was going to say. With that in mind, this is where we are tonight.
We had another ER visit today with Lily. It was actually the 2nd time we rushed to PCMC this weekend. On Saturday she was having issues with her oxygen sats, we couldn't get her above 90, so we piled in the car and headed for the hospital. Once in the car she of course started satting at 100, so we headed for homecare instead (which miraculously is open on Saturday) and traded in our pulse oximeter for a new one, thinking the issue was all in our machine. We went up to Park City to do the annual ski weekend with my parents. Lily seemed fine the rest of Saturday, and Sunday. Then last night the same oxygen issues started up again. Turned her up, switched the probe, tried different locations, finally seemed to find a combination where she was doing okay, and went to bed. At around 1:30 it started again and we spent the rest of the night taking turns silencing the alarm. Honestly that's all we did. I really did think it was the pulse oximeter and we would deal with it in the morning. In the morning we did just that, decided it was her, and not the machine, loaded up the kids and came down the mountain. No skiing for us.
At the ER her sats were still at 85 on 1 liter O2, her regular being 0.5 L. We put her up to 2. No congestion. No fever. Moving air well. Chest x-ray actually looks BETTER. We decided she must be shunting blood strangely through her giant, messed up heart and we went home with the plan to call cardiology tomorrow and see if they want to do an echo. When we left she was on 1 L again, satting 99. Now she's on 2 liters again, satting low 90s.
The funny thing is she looks really good. She's active, awake, maybe a bit irritable but if it weren't for the dang monitor we would think she was doing better than ever.
So is this our new normal? Chasing her sats around, up to 2 liters, could even use more but our concentrator only goes that high?
We are tired and frustrated, and unsure what is right anymore. Why is Lily here? She doesn't have much quality of life. She sleeps even more than usual since we started her seizure meds. Her skin is forever breaking out and peeling since the amoxicillan rash. She is covered with bruises from the multiple IV attempts from our PICU stay. Now she is requiring a massive amount of oxygen. I mean, when does this end?
Our only "Hope" as been surgery to fix the multiple holes in her heart, which could potentially bring her oxygen needs way down and fix this latest shunting issue. But I'm certainly not thrilled about putting a tiny baby through open heart surgery when she has so many other issues on top of her heart. Zar and I feel like terrible parents when we look at each other and wonder aloud if she--well...would rather not be here. We keep waffling on the DNR issue; we discuss intubation and what that would accomplish, we change our minds minute to minute.
I guess I'm just looking for permission to completely fall apart for a second and say that this is just too hard. It is too hard with two other little girls. It is too hard when Lily doesn't seem to have much to live for. When it seems like most of her life is either spent sleeping or in pain. When she doesn't even seem to want to be held. When it just doesn't seem worth it, to anyone.
I believe in comfort care. I believe that death is not the worst thing, and focus should be on life, and the quality thereof, and not on just alleviating death. But of course it's different when it's your baby. When you are the one saying "no...do nothing."
My biggest fear is not surgery. It is not even doing the surgery and having it not help. It's this; choosing comfort care only, and then not being able to comfort her. Watching her decline. How long that would take. Just waiting. Just because an option is available, doesn't mean it should be utilized. Unless, of course, it should.

Wednesday, January 12, 2011


Quick Update:
We're Home! Hooray for having the experience that convinced the docs to let us discharge from the PICU instead of making us camp out on infant unit for a few days.

No other near death seizures. Some continuing probable seizure activity--lip smacking, small desats, eye flutters. Will follow up with neuro soon. For now just keeping her monitored 24 hours a day and watching for scary seizures.

So happy to be home with girls. Ella welcomed Lily home by burying her in socks. (?) Two year olds are cool.
Awesome Ava is teething and her coping technique is apparently to "sleep it off." She wakes up to gnaw on a cucumber and then goes back to sleep. I haven't even had time to dose her up with Tylenol. Works for me.
Zar gets home tonight and he was able to get an earlier flight! Hope to see him in an hour or so.
Having entered "survival mode" I'm perfectly happy to be home with my girls for awhile and let the Keppra reach it's full potential. We also missed Lily's synagis dose on friday so she isn't protected from RSV. Hoping we can get that dose quickly, although after her last dose she had two big seizures that night. Didn't know that's what it was at the time though. Arg.
Quarantine for now.

Sunday, January 09, 2011

A Day of Rest

Random Pic of Ava and Popsicle because I don't feel like downloading hospital pictures.

We had a quiet day today. Zar stayed at the hospital last night and for some reason came home at 7 am...and then took the Sunday paper into the bathroom and clipped coupons for an hour. That's neither here nor there but shows our rather random thought processes at the moment.

The girls went to Grandma E's and went to church with them, terrorizing their ward, apparently, and Zar and I went up to be with Lily. It was one of those nice low key ICU days; discussing books with the nurse, reading, and nothing going on with Lily except the removal of the EEG probes, some horrific diapers and the weaning and removal of the c-pap and back on high flow oxygen. Oh, and a move to the "Old School" Picu section, a room Charlotte had a few times, but a good room with it's own bathroom, so we will tolerate it.
No seizures since the medication was started last night. She threw a couple of major fits today, flailing and screaming, which I guess could be a side effect of the medication. However it could also be a side effect of having air forced up your nose at high speeds, the occasional sinus bath when water from the c pap overflowed in her face, her sore bum, gas, diarrhea, having an IV or lack of any food since Friday morning. So I'm not going to worry about it yet.
Zar went back up to spend the night with her again. Hopefully by the time he arrives they will have started her on feeds, and they will have a quiet and peaceful night. We had decided if Lily had a good today and tonight we would consider it safe for Zar to go on his business trip tomorrow. Yikes. I feel like Lily will be just fine, but it is sure going to complicate my life for the next three days! Send us prayers that Lily will be good, calm, and uncomplicated. And the other kids too. ;)

Saturday, January 08, 2011

Lily's EEG and first dose of Keppra

The Celebration of the Insane--we found a cause for the Blue Spells!

What...a...day.

For one, it was very, very long. I cannot believe just this morning I rolled out of bed, put on scrubs and went to work. And told everyone Lily was doing great, and would be out of the hospital as soon as we could finagle it.

Well, since then Lily has had five seizures. And I can say seizure now, not "blue spell" or "episode" because we have confirmed seizures. She had her first seizure this morning before Zar and I got there, then another after Zar arrived, and then another while I was on my way up, having left work early, and then another, after being put on an EEG and c-pap but of course during the time the EEG was paused for adjustment...and finally, the last, which we caught on EEG and quickly confirmed was seizure activity. Which wasn't good news, I suppose, but not bad news either.

Prior to the confirmation we had ordered a DNR/DNI. Which means, we had decided that we didn't want a tube shoved down her throat, or her chest pounded on, if a blue spell was lasting too long and it looked like she wasn't going to pull through. That was rough. We felt like there was no reason to intubate, work to get extubated and then have her turn blue the next day and have there be nothing we could do. She was serious about the blue spells too, dropping to an oxygen saturation of 10 today while on c-pap. We hunkered down to wait for the next one, which we feared would be her last.

Then the docs came in with the news that there are storms in her brain, starting on the left and then traveling throughout, and once her brain gets overwhelmed, her heart rate and respiratory rate drops, her sats drop to nearly nothing, and then she has to fight to get back. Apparently she really wanted us to diagnose them, as this is the first time she has had so many so close together. Or at least that is how we are choosing to look at it.

We pulled the DNR/DNI to give her new meds a chance to work, to see if we can calm her storms. We had ice cream cups from the patient "nutrition" room to celebrate. (This was really more me...Zar had a harder time "celebrating") and we steeled ourselves for more PICU time than we originally anticipated.

Funny that a seizure diagnosis also brought hope.

Friday, January 07, 2011

First Post NICU admit


Lily is in the PICU. She's okay though. At least that's what the nurse said over the phone 20 minutes ago. If you were to ask me I would say "She's FINE! Sheesh." But you learn that everyone has their own definition of "Fine." Apparently our nurse feels that no kid in the Intensive Care Unit can really be considered "Fine" so she said she was just okay, and then proceeded to tell me she was about to wean her oxygen down a little more. That would even get a "She's GREAT!" out of me. But alas, to each her own.

This morning at 4 am Lily started whining. I tried my best to snooze through it and chalk it up to "neuro-irritability" which I learned about from the Palliative care team yesterday, but Zar was up and more agitated than Lily. Yes, her monitor was also beeping a bit but she was Crying for heaven's sake. Anyway, Zar kept waking me up with his "Why is she so sad!?" and "What can we do!?" So finally after I had sent him downstairs for tylenol and albuterol, I decided I had better have a look.

Sigh.

Lily was indeed irritable, and also pale, and pulling for breath, and gagging a bit. Plus her heart rate was occasionally over 200. We started making ER plans, but then after the tylenol, albuterol and a prayer she seemed better and went to sleep, so I put her in bed with me and went back to sleep.

Today was supposed to be a busy day for us, with physical therapy at 9, synagis and doctor appointment at 1030, and hair appointment at 1230, but none of that happened. Instead, although Lily looked better, her heart rate was still too high for comfort and we decided we had better take her in. A few minutes later she spiked a fever of 102.7 so that just hastened things.

I drove her up, got her checked in, went through 7 IV attempts with her, learned that her urethra goes quite a bit "to the right" and ate a soggy english muffin with fake egg. We got to the PICU quite quickly; the hospital is practically empty or so it seems to me. Anyway, no pneumonia. No urinary tract infection. No RSV or Rhino or anything else on VRP. No more fever. Some extra fluid on the lungs, but after screaming through the IV sticks she seemed to open up those lungs and move air better.

So. We are in the PICU. It's all different. This is good as it's easier to separate Lily's PICU from Charlotte's PICU. This is our first visit back in nearly 2 years. Even the room numbers are different. Bed 19 is no longer bed 19. There is a lot more light. Those famed slushie machines I heard tell of were empty. It is FREEZING. Lily has the same mobile Charlotte had, very familiar and dear and somewhat difficult to hear. She's hungry and on high flow oxygen. I am home with her sisters, hopefully Zar will stay there tonight. We are worried about her heart function due to the lack of infection. Her urine output is down. Some question on g-tube drainage. But did get a very nice cream for her amox rash. Looked better immediately.

Hopefully things will continue to be fine, or at least okay.

Monday, January 03, 2011

Forever


Ava was sealed to us in the Salt Lake Temple on Thursday.
The day before, Lily had two blue spells during the night, satting as low as 20, and then another one during the day. She pulled herself out of them but it seemed to take a little longer than the last time it happened. We considered going to the ER but we figured out nothing last time we did that, her lungs sounded clear and she had no other symptoms. Plus we would have to postpone the sealing. I said to Zar "if we cancel, when are we going to do it? When Lily's gone? There will never be an ideal time to do it." So we decided we would focus on Ava's special day and go up to the ER right after the sealing. Not exactly the "Family Wedding Day" I was envisioning. I had called Lily's cardiologist and left a message, and he called me Wednesday afternoon and after a discussion said he would call neurology for us to check for seizures. Neurology called 10 minutes later and asked us to come in the very next morning. Great. I said any other time, ANY OTHER TIME I would make it work but I really could not cancel my plans the next morning. I could tell he was annoyed with me, which I understand. They were bending over backwards for us. He said he would try to get us within a couple weeks.
It snowed like crazy Thursday morning, and of course I thought it would be good to schedule us at 9:40, meaning we had to be at the temple at 8:25. Fun. Luckily Lily had no other episodes and we got it approved for Grandma to be with her at all times before the ceremony for everyone's comfort. She also helped dress the girls in the gorgeous white dresses she had made for them. I guess Ella threw a huge fit over it (she's not a dress fan--she likes PANTS! PANTS!! WAAAAH!) so I'm glad Grandma was there and just not a soft spoken Temple Old Lady.
My mom had been misdirected once she arrived so for the next hour I had to keep hearing "where's your mom? She's not here! Does she know where to go? Did she forget?" I'm like "You know what...I can't really deal with this so I'm going to let it go." Turns out she was ready and waiting for us the whole time. I got to get dressed in the Bride's room with a bunch of lovely little Winter Brides and all their finery and fur shawls and such. They were all so nervous and cute. I'm sure they saw me putting on my cardigan and thought I was quite an old and unfortunate bride.
The ceremony was lovely, the girls all behaved and acted charmingly, and it was simple and sweet. It didn't matter that we had endured tons of stress over the last 24 hours. What was important was we were there with our daughters--all of them--and after all the stress of life, we will be together again.
Afterwards everyone was suggesting we grab some lunch, and we had to admit that Lily was having issues and that we were going to head for the hospital. That went over well. Once out to the car I picked up a message from Neurology saying if we could get there as close to 11 am as possible we could be seen. It was 10:53. We rushed up the hill and checked in at 11:07. Lily was examined and underwent an EEG, but it didn't show any seizure activity. There is still a fairly good chance that is what is going on, but we can't prove it at this point. We turned up her oxygen and will see what happens over the next couple weeks and call the doctor back.
We got to have a couple calm days and blessed Ava yesterday at church. It was wonderful and Ava's birth mom was there, which was so, so amazing and special. I cried when I saw her there. Zar did a wonderful job, blessing Ava that she would feel connections to both the family she has come to and to her rich heritage, and of course he put in my request--that she will be "noted for her virtue" which I feel is important. Hey...I remember high school.
I'm glad for the New Year. I'm looking forward to some quiet days and short, uneventful blog posts.