Loathing Fear in Chico

Here is a great picture of Bean at the park this morning splashing in the water that was pooling up in the bottom of the giant sandbox.  It has a faucet up on top of a little hill that sends water cascading down the rock structure and into the sand below.  She absolutely loved it.  And although it was a bit warm today for the month of September (9 degrees over the norm I heard), it was a great park visit.  I thought we were in for a great day.  Boy, was I wrong!

I had to return the rental van from this weekend's debate trip, which meant moving Bean's car seat from our car into the 12 passenger, driving to Enterprise and sitting around for about a 1/2 hour waiting for a ride home.  Bean was actually really good during the wait, but it was still a wait I could have done without.  Especially when my phone died as soon as I sat down, so I couldn't access email or get anything done while I was there.  We finally got a ride home and I really thought that Bean would take a nap, but it just wasn't in the cards.  It seems more and more that she goes without a nap unless she is driven somewhere for a long enough time that she falls asleep.  Which happened a couple of hours later when I was taking her to Kids Park to drop her off.

Last time she was at Kids Park, I left her there for a longer time than usual (about 4 hours total) because I had two work meetings in one morning.  She attended their pre-school from 9 - 10:30 am and that went well, but afterwards, during open play, I guess she was running and bumped heads with another kid and just lost it.  I got a call as I was going into my second meeting saying she was crying and could not be consoled and asking what they could do.  Since I was on my way into a meeting, I was caught off guard and could think of nothing.  Great mom, huh?  Can't think of one thing that consoles my child.  Well, I actually thought of the bottle, because that definitely consoles her.  But, because we have gone to only three bottles a day, I had not taken one with her because her afternoon bottle is not due until 2 p.m. and I would be picking her up at 1 p.m.  I also had forgot to pack a pacifier or any other comforting item.  So, she cried and screamed and threw things I guess.  She finally calmed down after about 10 minutes and she was fine when I went to get her.  BUT...she has a memory like a steel trap and once something settles in there its hard to get rid of it.  So, she has been whining a bit every time I bring up Kids Park.  I really should have known better, but I thought she would get there and realize how fun it is.  I also knew she was super tired today, but I had no other child care options and needed to go to work.  So, I dropped her off about 3:20 pm and headed into work for my 4 p.m. class.  At about 3:45 pm my office phone rang and I immediately recognized the number as Kids Park.  My heart sank...

Sure enough, she had got upset about being left there (even though when I left, she was happy to see me go and gave me a kiss and said good bye...20 minutes earlier...).  This time though, she cried so hard that she made herself sick.  This has been a Bean trait since early on in returning home from the hospital.  It kept me from making her sleep in her crib - the cry it out method made her puke.  And really, she would cry hard enough to throw up even if I was sitting there and just wouldn't pick her up.  She has thrown up in her big girl bed a couple of times from crying so hard.  If I sit and blow in her face repeatedly when she gets that upset, I can usually stop the regurgitation from happening.  But, you can't really make that part of your day care instructions - right?  So, I left work - at first panicking because I thought she was really sick.  I mean stomach flu would be disastrous right now, and she has been sleeping really poorly the last couple of nights.  So, I thought the worse - because FEAR is a constant in my life.  Although we have been incredibly lucky in her not getting sick at all since the transplant (knock on wood), she is on immuno-suppressants and she has not had her flu shot yet this year.  So, I panicked.  It could have also been the fact that I went to bed at around midnight last night and woke up around 5:00 a.m. this morning, with a wake up scream/cry or two from Bean in the midst of that five hours.  I swear that R.E.M. is only a band name from my youth and not some type of restful sleep that I reach every night.  I feel as though sleep deprivation may be reaching extremes...and the exhaustion makes me act like a hormonal crazy person.  So, I cried, cancelled class and went to Kids Park to get her.  She was still crying when I arrived.  Her face was puffy and red and she was clearly miserable.  But, she had no fever, she was breathing fine and she immediately perked up when she saw me.  She complained of her ear hurting when we were walking to the car, said that she didn't want me at work, and promptly said she wanted french fries.  At this point, I am definitely not happy.  I feel guilty - why didn't I just hire her babysitter to come over - who she loves?  To save $2.50 an hour?  To "socialize" her, when I am convinced that much of that socialization is just teaching her bad habits like screaming, saying no defiantly or "mine" constantly?  Really, I kind of thought it was a fun place and she seems bored at home so much of the time.  But, I think Kids Park is off the list of places to leave her for a little while.  I just think she's going to be slow to reach a certain level of independence.

And, I guess that's okay.  She was, after all, laying in a hospital bed hooked up to machines and unable to be held or cuddled or loved on for almost the first five months of her life.  But, every time I hear myself saying that or read it as I write it, I think I sound like one of those crazy people who justifies their ridiculous actions by saying that it is because of something that is really not related to the other thing.  I mean, what if the crying until she throws up is just a thing she does because she knows it allows her to get her way?  It seems really extreme...and when she is in the midst of one of these episodes, she really does look uncontrolled.  She looks like she can't stop crying and is really in the middle of something painful.  So, I can't imagine that she does it on purpose.  But, heck, I could just be taken for a ride.  Who knows?  All I know is that I still have the FEAR in the pit of my stomach anytime she even seems like she may be getting sick.  And I LOATHE that FEAR!  But, its not going to go away.  It will never really go away.  Its kind of like a toothache that is always there, but you get so used to it that it doesn't bother you until something cold hits it and then its this shooting pain that is unbearable for a temporary period.  Today was something cold hitting that dull fear and it became unbearable for a temporary period.  But, now its over and we're back to the normal dull fear - we'll go to the eye doctor tomorrow and visit the pediatrician just to make sure nothing serious is going on and next week we'll go to Stanford for clinic and I will hope and trust that everything will come back fine and we will continue on. But, that fear is still there.

Another family that is on a pediatric heart transplant email list with me got a shot of that sharp pain today and it won't be as temporary for them.  Their son, who is now 13, received a heart transplant as an infant and now needs not only a new heart but a new liver as well.  My heart goes out to them...I can relate to their pain.  And I dread the day that I will have to deal with something similar.  And maybe we never will - maybe our luck will hold out and Bean will keep this heart for 20+ years.  But, I guess the point is, we won't know...

Anyways - she is doing well now and I think she is really healthy.  I think just like she is growing physically a bit more slowly than others, she is also growing emotionally a bit more slowly than others and she has hit her point of separation anxiety.  She has also started to show some signs of the "terrible twos" as she gets closer to her third birthday.  So, we may just be running a bit behind schedule with some of these typical "milestones" the parenting books and magazines talk about.  We shall see.  But, for now, we'll just keep on dancing...

Mommy Madness Blog Hop - Mommy Time

I am participating in the Mommy Madness Friday Blog Hop this week!  I figured doing a few blog hops may get me posting a bit more frequently and diversify the posts a bit.  So, this week's theme for the Blog Hop is "Mommy Time" or what I do to escape the madness.  I don't do anything really specific (and let's face facts, I often do not escape the madness - I embrace it), but I do like watching TV.  My favorite shows are what my friend calls "Murder, Death, Kill" shows - Law and Order, CSI, NCSI.  But, I also like The Good Wife, Glee, Parenthood, Modern Family and The Middle.  I have become addicted to my DVR since I can't predict when I'll be able to watch TV.  I also like to read mysteries (some more murder, death, kill).  In addition, I am a member of Chico Mothers Club and I like the monthly Bunco games and the monthly socials.  So nice to get away, but still be able to talk about your kid(s) with people who know the realities! 

I do think that Mommy Time is important, but I also find that Bean is a stress reliever for me in some ways.  Its hard to be stressed out and upset when she does her goofy "beeeeees" instead of please or her elephant noise accompanied by her arm lifting like a trunk.  She's just too cute!  So, although she sometimes drives me mad, she also can be a great mood-lifter!

Doctors & Hospitals - Resource for Parents

Doctors & Hospitals

The link above will lead you to a great resource! For those who are unfortunate enough to be looking forward to hospital stays and/or multiple doctor visits, there is some great advice. There is also good advice for those who have a young child taking medicines (how to get them to take it, etc.) and the administrative things you need to consider for health care of a child. I HIGHLY recommend this as a bookmark for anyone as you never know when you will need the information and it will make you feel better to have it when you need it! I subscribe to the Kids Health newsletter and although a lot of the information is for children much older than Bean, I have found a number of things in it to be very useful.

Back to Blogging Day One: Back to the Beginning

In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog.  I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week).  The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances.  So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!

The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:

A Year of Thanksgiving...and Soul Searching

Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!  I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks.  So, this starts my year of Thanksgiving...
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart.  She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest).  We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago.  Needless to say, our lives have been turned upside down.  We have to give Bean medications three times a day.  We have to flush a broviac line (something like a semi-permanent IV) each day.  She has a lot of doctors appointments that are about three and a half hours away from our home.  We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry.  My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges.  We will need to figure out additional forms of income.  We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean.  We will need to deal with insurance debacles that are threatening to put accounts into collections.  We will need to become aware of medical issues that come with Bean's medications and treatments.  And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them.  Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet.  But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart.  I hope you will find something that is helpful to you!

Well, there it is.  It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago!  We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully!  We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life.  I still need to get more organized.  We are still constantly looking for additional sources of income and often short on money and time.  We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month.  We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast.  We are hoping for the same this year!  I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it!  So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit!  I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy.  I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey.  And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...

So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do:  "get me back into a posting and commenting routine now that summer is over."  I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began!  Its a challenge...but, I feel motivated!   

Zero = Perfect Score on this Test!

We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!  This is the first time since her transplant that she has shown zero rejection and the docs were starting to consider changing medications (again) if it didn't happen this time.  So, we are all relieved and happy that she is (1) fully accepting her new heart and (2) able to start weaning off the prednisone (which may be contributing to her lack of growth to this point).  Prior to this, she has had mostly 1 or 1A results, with a couple of 3s thrown in for good measure (and three day hospital stays).  So, hopefully we have the medication levels figured out and she will continue to get these zero readings for a while.  We now get six weeks off from clinic appointments and a whole three months before the next biopsy!  A nice break in our travel schedule, especially with DH being in Michigan for work for six weeks!

Despite this good news, we also have to add another appointment to our long list of medical appointments we have for her.  The GI docs referred us to an endocrinologist to see if there may be some hormonal cause of her lack of growth.  She is on the low side of caloric intake, but not low enough that they thought it should cause her to be as small as she is - and she is small in both height and weight - she is proportional.  So, we have a pediatrician appointment on Tuesday and will ask him to refer us to someone at UC Davis so we don't have to drive to Stanford for those appointments.  Hopefully we can find someone there and will not have to add another trip to Stanford to the mix. 

Other than that, she is loving her weekly therapy through the Far Northern Regional Center with Angie.  She gets to play with all the toys that Angie brings in her big bag of toys and she is learning to put things back "in" to containers (versus just taking them out), to put pegs "in" holes (versus just taking them out), stack items, etc.  And she gets to play with bubbles, wood puzzles, and other cool toys.  Angie is fantastic and I can't say enough good things about the Regional Center here in the North State.  Bean is also getting physical therapy twice a month, but she seems to be quickly surpassing the goals they had set for her a few months ago.  She is climbing stairs (a little too well - had to put up a baby gate), cruising along furniture, crawling like a speeding bullet and has even let go to stand unsupported a couple of times.  Very exciting changes!  She is not talking at all yet - but, lots of babbling and a few things that sound like words - "up", "dada", "mama", etc.  But, she doesn't have a lot of purpose tot he words, so I'm not sure if she is really talking or just babbling more.

We are looking forward to summer in Chico.  There are a lot of fun things to do here during the summer and I plan on taking advantage of as many as possible.  There are movies in the park once a month, a family fun fair in one of our local parks each month (moves around from neighborhood park to neighborhood park), and of course the Thursday Night Market and Farmer's Market on Saturday mornings...and I am now part of the Chico Mothers' Club and we have a weekly playgroup, monthly bunco, and a lot of fun "field trips" for kids.  So, I'm planning on keeping busy this summer and taking advantage of my first summer with Bean out of a hospital and in our fun town!

First thing on the list of fun is a visit from our good friends from Arizona!  They come in on Monday and will be here for the week.  This means I need to finish reorganizing the guest room (which is a chaotic mess right now) and getting the house tidied up a bit, finish the laundry, and get stocked up with snacks, etc.  I'm looking forward to their visit and enjoying a little "stay-cation" while they are here.  There will be a trip to Lake Almanor to golf (well, I won't be golfing, but will be enjoying the scenery) at Bailey Creek Golf Course, an Oakland A's Game, Thursday Market, maybe a Chico Outlaws game, and of course some BBQing!

Unexpected Motherhood

As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection.  I don't think motherhood is ever what we EXPECT it to be.  After all, first-time mothers have NO IDEA what to expect.  We all watch other people parent.  We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything.  In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen.  But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared.  And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up.  Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton.  She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for.  Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do.  It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky.  But, I also realize there are things that are "typical" for me that other moms will never have to deal with.  Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well).  Getting blood drawn on a regular basis.  Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists.  Its all part of our lives now.  And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey.  It captures so much in just a few simple statements.  My favorites include:

I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.

I never knew how terrifying a simple stomach bug could be.

I never thought I'd know what an IEP is.

Those never knows become empowering "now I know"s soon enough.  And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others.  Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us.  I am truly thankful and appreciative this Mother's Day! 

Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love.  And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you.  This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart.  May you feel that love today and all your days.

Don't Worry, Be Happy...Not Really Possible Anymore

I never really liked that song that much anyways. I have always prided myself on not being a big worrier.  I was able to let things go pretty easily and I didn't waste a lot of energy worrying about things outside my control.  But, I will always have an undercurrent of worry about my life now.  An immunosuppressed child is nothing but worry.  I worry about people touching her (we have little signs on her stroller and car seat that I ordered at My Tiny Hands, but obviously people don't always see it, or we are carrying her, etc.  It is especially bad at this time of year, with the flu and colds and such floating around everywhere.  I also worry about her being in enclosed places - we were warned on release from the hospital not to go to malls, grocery stores, etc. with her.  Some of that is held over for flu season as well.  But, now my husband and I worry about everywhere we go - are there too many people?  Is the airflow poor?  The funny thing is, I know there are transplant kids who have to fly places at this point post-transplant and that seems like the worse possible thing to avoid germs, so I'm sure us taking her into a small restaurant is not such a big deal.
But, the worry is there.  I am friends with some other transplant moms online and two of them have ended up back in the hospital this week due to fevers/cold symptoms/low white cell counts.  Luckily, one of them is already out again after a blast of some IV antibiotics.  I'm hoping the other gets out just as quickly.  But, I sit at home, thinking - we could be back in the hospital tomorrow...am I ready?  Do I have things at home settled enough that I could leave at the drop of a hat and not come back for a few days.  That is what I always much be ready for now.  Last time, my husband took her for her regular clinic appointment and ended up staying for two days.  So, I think its best for me to always be prepared.
I think I do pretty good with it.  She always has a basic diaper bag packed.  She has plenty of clean clothes and blankets ready to go.  We don't have any plants to water and the dog always goes to my sister's or my mom's house when we go.  Right now, the house is pretty picked up (there is nothing worse than spending three days in the hospital and then coming home to a dirty house).  Her medicines are all kept in a little plastic tub that can be grabbed on the go quickly.  So, yeah, I'm ready to go. I hope I don't have to go...not for an emergency anyways.  We do have a biopsy scheduled for January 5 that will require us to leave on the 4th and stay at my sister's or mom's house for a night (to make the morning a little less early than 3 a.m.) and then I have to work in the Bay Area for the next four days after that, so it will be an extended period of time away from home...which requires even more preparation - a pack-n-play, toys, more clothes and blankets, syringes, bottles, formula, food, spoons, etc.  Its like traveling with a circus really - and we only have one child!  I can't imagine if I had two or three!  I don't think I would ever leave the house overnight voluntarily!
Well, Bean is now awake from her nap and crying, so I  have to go.  But...are you ready to leave at the drop of a hat if an emergency happens?  Even if you don't have an immuno-compromised child, its always good to be prepared.  The Boys Scouts knew what they were talking about on that one!