Thursday, August 27, 2009


I'm going to speed this up a bit not - partly so I can catch up to real time and partly because the next week didn't bring a lot in terms of action for my Dad. From my perspective there was a big change with Dad from Saturday to my return on Monday. He was awake on Sunday, but they had to put the catheter back in and that didn't go so well. He strongly resisted the whole thing and they needed to sedate him at some point in the day. My memory of what all happened here is fuzzy. But between the sedation and just general sleepiness/loss of consciousness caused by the hydrocephalus, Dad was intubated and asleep when I next saw him. He would remain in this state for the entire next week (8/17 - 8/23).

When I got back Monday I went straight to the nursing home to see Grandma. She had numerous visitors over the weekend - pretty much the whole family had gotten there to tell her goodbye. When I got to the nursing home she was no longer talking to anyone, just resting quietly. A couple of hours later she left us. It was a peaceful goodbye and she was surrounded by her family. Only Dad was missing.

The next week was a whirlwind. Gordon's Dad came up from NJ to help us with Lily. Quinn and I stayed at my Mom's. We spent days at the hospital, but also prepared for Grandma's wake and funeral. Her wake was held Wednesday night and the funeral on Thursday.  My mother, brother and I stood there at the wake receiving everyone who came to pay the respects to Grandma.    We accepted their condolences and responded to everyone asking after Dad.  It felt sort of surreal.  

The wake and funeral became "bright spots" - the only thing that sort of made sense that week.  Saying goodbye to Grandma I could at least get my head around.  It was sad, but it made sense - it was expected - it was therefore, "okay".  I hardly had the energy to truly mourn her loss.  Instead, I sort of held on to it, went through the motions, taking comfort in something that felt vaguely familiar.  Please don't think that I'm not sad that we've lost her  - I am.   But in the scheme of horrible things that happened that week, Grandma's passing got lost, at least for me.

After the funeral Gordon, Lily and Ba Ba went back to Somerville.  I stayed behind with Quinn.  At some point that week Dad got pneumonia - mostly likely from being intubated and in the ICU.  Here's where the reality of my argument with the nurse starts to come into play.  Dad is so sick and needs to be in the ICU - yet it's a place where he is just destined to get sicker with other stuff the longer that he is there.  They put him on antibiotics to fight the pneumonia, he remained on the vent.  We went to see him day after day and stood there by the bed, wishing he'd wake up, knowing he couldn't as long as the vent was in, wondering when we'd next get to talk to him and what that would be like.  

He had vasospasm.  He was treated for them.  His hydrocephalus was monitored.  His head continued to drain.  He had two more angiograms - both were negative for aneurysm.  On Thursday a doctor sat down with us, drew us pictures, explained a bit more what was happening.  He explained that although they couldn't find an aneurysm the blood pattern in his head was what you would expect from an aneurysm.  He had a lot of blood, in a star pattern - he was in the category of "diffuse, angio-negative, sub-arachnoid hemorrhage".  (I went home and looked up papers later).  The blood had circulated around his head and there was now blood in his ventricles.  The blood products were also blocking the natural drainage system in his head causing hydrocephalus.  The pressure in his head was normal, but the ventricles were swollen, enlarged.  There was too much fluid there.  The blood and the swollen ventricles were combining to leave him sleepy, unconscious.  They were draining his head, fighting the pneumonia.  They still weren't sure what had caused the bleed to begin with.  He may very well be in the 5-7% of people for whom they never know.  

They explained the "1/3 rule" to us.  One third of the people with SAH never make to the hospital.  One third recover with some neurological deficit. One third recover completely.  Dad had escaped the fate of the first third, but it was still unclear which of the remaining two possibilities described his future.  So we waited.  On Sunday 8/23 they removed the breathing tube and he woke up.

When it Rains....

The next day was Saturday - and things started getting a little more complicated. We started out the day by heading to the nursing home to visit with Grandma. Seeing her had been our original intentions before everything went crazy - so we still wanted to make that visit happen. My brother went off to the hospital to be with Dad, while Mom went with us to visit Grams.

When we got to the nursing home they told us that they had just put Grandma to bed - she was falling asleep at lunch. We went to her room and found her lying in bed, barely with us. We knew right away that she was nearing the end of her journey. And although we had been ready for this - the timing was just not something we could get our heads around. Grandma was almost 90, and she had been dealing with Alzheimer's and failing health for some time now. She was ready to say goodbye, to move on. As hard as it would be for us to say goodbye, we knew it was her time. But Dad was supposed to be there with us - not lying in the ICU, unaware of what was happening.

So we all took a deep breath and sat by Grandma's bed. We called all of her nieces and nephews. My Mom is an only child but has a large number of cousins (Grams was one of 11 children). We have a large extended family and Grams was the only sibling left. Eric came back from the hospital. Grams was weak, but she was talking to us a little bit. She was so happy to see Lily and to meet Quinn. When possible to step outside of the worry for my Dad - it was such a nice thing to be able to share this time with Grams.

In the afternoon, Gordon, the kids and I left the nursing home to go see my Dad. He had been alone for some time that day. As you can imagine I was not really in my right mind at this point. Gordon dropped Q and I off at the hospital and went to park the car with Lily. Quinn and I rushed up to the neuro ICU. On the way in I was stopped and told I really shouldn't be bringing Q in there - due to the risk of infection that an ICU poses. I couldn't really process this information and said "uh - I have no choice" and went into my Dad's room. Dad was sitting up and looked better than the day before. We had a brief conversation - during which he told me that he was at work. I had to gently point out that he was in the hospital. He eventually looked around and was surprised to discover that I was correct.

Just after this disorienting conversation, my Dad's nurse came in and started berating me for bringing Quinn in with me. She went on and on about the risks I was exposing him to and how awful I was for doing that. My brain could hardly process anything at this point. Finally I told her that I would take Quinn out, but asked her to leave the room first so I could pull myself together and finish talking with Dad. She stood there and kept repeating her speech. I thought my head was going to explode. Finally, after I asked (insisted through clenched teeth?) that she leave yet again - she did. I told my Dad I'd be back and went to the waiting room to hand off Quinn to Gordon.

Later on the same nurse told my Mom that watching me walk in there with Quinn was like seeing me "hang him off a cliff". Let me just say that although I would have appreciated a gentle reminder about the dangers of an ICU, I could really have done without the overblown reaction and the not-so-subtle implication that I was failing as a Mom. I do believe that my biggest parenting challenge so far has been trying to balance my roles as a mother and a daughter during this difficult time. I'm trying desperately to do what's good for my children, but I also need to be with my Dad. I would really have appreciated some help in this area, but could not process being scolded. The situation resolved itself in that I made nice with the nurse (for my Dad's sake and the rest of the family) and eventually got advice from Quinn's pediatrician on what to do going forward. (For the record, the pediatrician thought the nurse had totally over-reacted)

So back to my Dad - after getting the kids safely settled in the waiting room with G I went back in. Dad was in bed now and we were able to have a pretty decent conversation. He was a little disoriented about the hospital still, but remembered that I had seen a Paul McCartney concert a few weeks ago and knew that Eric and Liza had been there earlier. He did not remember seeing us all the day before (not surprising). His Foley catheter was gone this day and he seemed much more comfortable without it.

We left that evening and returned to Somerville. I hadn't packed enough stuff for a long stay and we needed to regroup and figure out what to do with the kids since they couldn't be in the ICU. It was an especially bad place for Lily since she's running around and touching everything - I didn't even want her in the waiting room area really. I left feeling "OK" since Dad was up and talking to us that day. It was strange to return home though - in this new reality. The plan was to hang out at home for a couple of nights and then I would return to my Mom's alone with Quinn on Monday.

Wednesday, August 26, 2009

And then the world stopped

I'm not sure how to start this post or how to write it - but there's been a lot going on here, and I feel compelled to talk about it.   Also, so many people have been asking after us and offering help - I thought it'd be nice to have a place to post updates as we go along.  So here we go...

Friday morning, August 14th (so nearly 2 weeks ago now) - Quinn woke up for his feeding shortly after 4AM.  Gordon went to get him and I lie there willing myself awake so I could give Q his early morning snack.  Soon after the phone rang.  I hate hate hate when the phone rings in the middle of the night.  So often it's a wrong number... but every now and then it's a horrible, horrible message.   Gordon had a hard time finding the phone and the caller hung up - I relaxed for a minute, thinking - phew, wrong number.  Then it rang again - and I knew someone was trying to reach us. 

My first thought was that my Grandma had passed away.  She's been in a nursing home with Alzheimer's for a few years now and had recently started refusing food. We knew she was getting ready to move on.  In fact, Friday morning we were heading down there to see her and introduce her to Quinn.  My stomach tightened at the thought that we were too late.  Gordon answered the phone and I heard him talking to my mother.  I prepared myself to hear the news that Grams had passed on and I hadn't gotten a chance to say goodbye.  

However, when I finally got on the phone and heard what my Mom had to say - I was woefully unprepared.  I vaguely remember her saying "Dad's in the hospital".  DAD?  - I said.  What could be wrong with Dad?   Then she said a sentence that included the words "brain aneurysm"  and my world just stopped spinning.  

I don't remember much about the conversation.  The jist was that my Dad had come home from his trip to Memphis Thursday evening, gone to a shelter board meeting, and then returned home - a normal day.  Around 10PM my Mom heard him in the bathroom and he complained of the "worst headache of his life".  My Mom took one look at him and called an ambulance.  They took him to Charlton in Fall River, but he was soon transferred to Rhode Island Hospital once they confirmed that he had experienced a subarachnoid hemorrhage (SAH).  

I couldn't really digest the news, my brain was both spinning and shutting down at the same time.  We made plans with my Mom regarding getting the four of us to Rhode Island and hung up the phone.  I lay back down and tried to get another hour of sleep.  I tossed and turned, got up googled "brain aneurysm", tried to control the scary thoughts running around in my head, tried to ignore the dismal statistics.

Eventually we got us all packed up, fed and in the car.  We arrived at Rhode Island Hospital sometime before 10AM.  My Mom, her cousin Gail, my brother and his girlfriend Liza were all there already.  We staked out a spot in the waiting room outside the neuro ICU - an area that would become like a second home in the weeks to come.  We brought donuts - no one wanted any.  We didn't know much yet.  Dad's brain was bleeding.  They suspected an aneurysm.  He was off getting an angiogram.  We should know more soon.     

A doctor came to talk to us - the angiogram was negative.  But due to the bleed pattern and his symptoms they were still thinking aneurysm.  They would repeat the angio in 7 days.  In the meantime we just wait and see what complications develop.  He would be monitored closely in the neuro ICU during that time.  SEVEN DAYS.  It started to sink in a bit more - we were going to be here a long time.  We had no idea where this new path was going to take us.

There were some encouraging things.  Dad had survived the bleed - not everyone is so lucky.  He was coherent and responsive when he came to the hospital. He knew the people around him and what was going on.  Again, not everyone with this disease is so lucky.  But the doctor was very straight-forward.  He was a really really sick guy.  We still didn't know the path this would take - there were many possibilities from here.  

Eventually I got in to see Dad, once he got back from his angio.  He was mostly out of it and it pain, discomfort.  He was complaining about a headache and also complaining about his Foley catheter.  He didn't seem to know who I was really.   We were told that his confusion and discomfort was likely due to a condition called hydrocephalus, literally "water on the brain".  The jist is that something (like blood from an SAH) prevents the cerebral spinal fluid (CSF) from circulating around the brain.  The fluid backs up and collects in the ventricles, which in turn swell and exert pressure on the brain.  Hydrocephalus is a common complication in patient's with SAH.  To treat it, an EVD (external ventricular drain) was put in Dad's head - allowing the draining of this excess fluid. 

Lily spent the whole day in the waiting room and was a total super-star.  Quinn was mostly strapped to me in the mei tai the whole day.  I can't remember how that first day ended, but we all eventually left the hospital, left my Dad in the care of the neuro ICU team and went back to sleep at my Mom's - all of us wondering what tomorrow would bring.  

Thursday, August 13, 2009

Eat A Peach

Life with a two and a half year old- it's never boring and often trying. I have to say that I've felt kind of bad for Lily lately. Quinn's arrival and the challenge of meeting all his needs and Lily's at the same time has left me with less patience for her - and it makes me sad. But really, when you have a crying baby who just wants some food on one hand and a 2-year old throwing a fit because your hair is in a pony tail on the other... well it's MUCH easier to be annoyed at the 2 year-old.

I'm sure that even without Q sapping my resources I'd find Lily challenging at times. It's a bummer because it's not always her fault. She's so full of life right now, so curious, so engaged, so busy growing and learning and relishing every day. She's in that magic time when there's still very little guile or willing deception in her character, yet she's articulate and so very plugged into the world. You end up with this perfect little girl who just sort of wears her heart on her sleeve - who dives into every day and every experience with gusto. Sometimes though with so much gusto that it leaves you breathless and doing your best to just hang on.

Today was of course, no exception. I've had this master post in my head for months now - about life with two kids under the age of three - but haven't found the time to write it (ay, there's the rub). So I've kept myself from just mentioning the daily going ons - saving it all for "that post". Well I'm crying Uncle. Maybe I'll still write something like that one day... but I might never get to it (like our Hawaii trip in 2007 that is undocumented here!) Anyway, today I was alone with Lily and Quinn all day - and we had a pretty good day. But by the end of it I was more than ready for Gordon to come and relieve me.

Some days it's just the relentless questions: why this? where's that? what happened here? who's on the phone? and on and on. Naptime seemed like it was going to go off without a hitch - and then the minute I sat down to feed Q she got up, announced that she had to pee and was finished sleeping, and then sat in the bathroom doorway slowly shedding her clothes. When I was able to I put Quinn down and went to help her. However, between saying good night and feeding Q I had the audacity to put my hair up in a pony tail. When she saw me she threw a complete nutty - running around screaming "take your hair down!". We eventually resolved the issues and naptime did in fact happen, but... wow kid.

She was so excited when Gordon came home - so excited that she nearly drove him bonkers as he got dinner ready. She wanted to help him, but couldn't stop herself from getting into everything as he tried to cook. She wanted cheese, now - she wanted to go outside to see Murphy - she wanted Daddy to play with her instead of cooking - she wanted water in the cup with the green lid, not the purple one. Finally we sat down to dinner. She's eating, she's up off the bench, she wants to go visit Mommy, she's back eating again, she's down to visit Quinton, and on and on. Gordon and I try to have a conversation - about the new Beatles Rock Band - and we keep hearing "excuse me, excuse me - I have to say something about Grammy" or "excuse me, excuse me - what are you guys talking about?" It's both annoying and endearing at the same time, because we know she just wants to be a part of our conversation, to be included.

Three quarters of the way through my dinner Quinn decided he had waited long enough for his. So I escaped to the bedroom with him - both sad to have to stop eating with my family, and a little relieved to be with only the child with needs that are pretty easily met. While I was feeding him Lily came into the bedroom, holding a saturn peach (our favorite kind) carefully in a glass bowl.

Lily: "Mommy, do you want a peach?"
Me (knowing that this was one of the only two left): "yes Lily thank you!"
Lily: "OK Mommy I'll put it on the bed for you"
Me: "can you take it back to the table and take care of it for me?"
Lily: "OK Mommy, sure!"
Me: "thanks Lily"
Lily: "I don't want the bees to get it Mommy. I will watch it so the bees don't get it"

And then she walks away, proudly holding the peach. The peach that she saved for me and is now going to keep safe for me. And my heart swells - because she always thinks of me in this way. Even on days when I am less than patient, when she can drive me crazy with one more question, one more disobedient act - she is always full of love.

(of course when I finally got to eat the peach, hours later, there were two bites taken from it - just too much temptation!)

Saturday, August 8, 2009

Smiling: some evidence

Being a second child and all there are fewer pictures of Quinn than we had of Lily. Now that's not to say there aren't any pictures - Gordon's still all over that camera - but he took ALOT of pictures of Lily. So I'm making up for it with a ton of extra blog posts dedicated to the little guy. Anyway, it took some time to catch a real Q-smile on camera - but here you go:

What? do you want something?

oh a smile? well maybe....

Dude - that's HILARIOUS, do that again!

OK show's over - move along

I'm quite enamored with his smile lately. He's also got this smug little half-smile that cracks us up. He totally looks like he's super pleased with himself. Now I just need to get an actual audible laugh out of him....

Quinn: 3 Months

Well here we are already - 3 months old! It's the end of Harvey Karp's "4th trimester". And let me tell you - I DO hope that this means Quinn will start being more and more okay with a little less holding - cuz my arms are tired. At least he's been a very effective post-partum weight loss program. Turns out walking around with a 10+ lb weight strapped to your chest is not bad exercise.

Ah poor Quinn - such typical treatment for a second child. He's 3 months old and all I can come up with is "come on kid, stop being so needy!" It's funny - I feel like he's both growing up faster and slower than Lily. Faster in that I hardly remember the last three months, but slower in that he still seems like a total newborn to me - and he's THREE MONTHS OLD! Gordon and I were going through pictures of Lily last night and she seemed older-looking at the same age. I can't believe he's going to be moving out of the first set of clothes already.

He may be a little more work than Lily was - or than I remember her being - but he's also a really sweet little guy. I love love his smile - and he smiles at us all the time. He seems to really love Lily - he always has a big smile just for her. He does like to be held and played with when awake, but he's also been doing a great job sleeping lately. Just last night he went to bed at 8PM and didn't wake until 6AM! Getting naps to happen during the day had been pretty dicey, but just the past week that started improving too. He actually took 3 separate naps today - all in his co-sleeper and not in my arms or the mei tai! Fingers crossed that it's the start of routine and not just a fluke.

Now we JUST need to get this car thing worked out. He still hates it - a lot. And it makes going anywhere really really rough. Even the shortest trip upsets him. He cries, real tears, almost instantly. It's heartbreaking and nerve-wracking at the same time. I'm just really glad I haven't driven us into anything yet as a result.

Let's see.. what else... oh he does this really cute thing just before he burst into tears - he puffs out his lower lip in a very cute pout. He can consistently roll from tummy to back and has taken some swipes at toys when lying under the activity gym. He likes to sit in my lap and watch the world and really digs checking himself out in the mirror. He also enjoys passing gas - and does so frequently - with gusto - and lots of smiles.

OK here are some favorite photos from month three!

Checking out the world over Mom's shoulder

mmmmm food coma

Taking a snooze with Mommy

How cute am I with this tongue thing?

Working on my head control - awww yeah

I'm flying!

Sharing a laugh with Tammy