Milestones Met as Time Flies

September 2009

It sometimes seems like a lifetime ago that we were finally coming home from the Ronald McDonald house in Stanford to a new (to us) home in Chico and life was becoming a new normal.  It wasn't too long before the developmental therapists from our Far Northern Regional Center began to visit once a week.  For Bean, it was play time - she got to play with different toys, sing songs and have someone devote 100% attention to her for an hour.  She loved it.  Our first therapist was pregnant and went on maternity leave...and we were sad.  But, her replacement ended up being great as well and new toys were introduced and the attention was still there, so Bean still loved it.  Watching the therapists was also a benefit to me.  I learned the developmental milestones they were looking for, I learned the toys and activities that would help Bean reach those milestones and I soon acquired toys that worked on the same skills. I wouldn't say that I "worked" with Bean on the skills, but I definitely "played" with Bean in the hopes of her reaching her goals.  And every report, she got closer and closer to her adjusted age (because of her being a preemie, she was adjusted to her gestational age).  

Well, as Bean's third birthday draws nearer (how did that happen?), a bittersweet realization was reached last week as her latest evaluation was being performed.  Bean has officially "caught up" - she is considered normal in almost all areas of development (she is a bit behind in fine motor skills and self-help skills, but these vary greatly by age, so it isn't considered to be a problem as long as they are close to their age)!  At three, the Regional Center transitions clients into the local school district.  But, we will not be transitioning because Bean is now not in need of additional services.  I say bittersweet because the attention and the training was great to have.  I think it really helped me help Bean and to cope with some of her challenges in a constructive way.  I was not afraid to challenge her because I saw her being challenged by someone else and saw her enjoying the challenge.  That confidence is harder to find on your own, I think.  But, I am so very thankful that she has been able to catch up - physically (she is walking normally for her age and she is even on the growth charts for weight now - 3rd to 5th percentile), linguistically (she's actually ahead in this area - not totally shocking since her parents are debate coaches and she spent a considerable amount of time, once out of the hospital, at speech and debate tournaments and even a two week debate camp last summer), and developmentally.  I hear/read so many stories from other families whose children are struggling because of their time in the hospital, their time on the ventilator and their time with a lack of full oxygenation from their heart problems.  We have truly been blessed with Bean rebounding from all those things in a relatively quickly and almost surprising way.  And for that, I am eternally grateful.  

I can not believe that we came home from the Ronald McDonald house almost two years ago!  Those first few months were a blur, but I still remember the incredible feeling of being able to dress Bean up in her flower costume and answer the door for Trick or Treaters in our own home:

In some ways, this seems like a lifetime ago - she has changed so much and done so much.  But, in other ways, it seems like not that long ago.  Last year, she traded in the flower costume for a cow costume and looked like this:

Which is not that dramatic of a change from the previous year...but, here she is a few weeks ago while on vacation:

The star of the show in Gigi's sunglasses...and the change from the previous year is pretty dramatic!  In two years she has gone from a teeny-tiny, tube-fed, broviak line wearing little girl to a now-just-tiny, food eating (and still three bottles a day drinking), line-free little lady!

And we are thankful everyday for her shiny, happy face (even when it isn't so shiny or happy).  She is loving life for the most part as a two year old and has not shown too many signs of the terrible twos yet (we're hoping THIS is not a developmental delay!).  She loves to talk, is really into starfish and jellyfish, can say "leopard shark" clear as day, and has fallen for Kipper the Dog (who can resist that adorable British accent?). She loves to play games, has a memory like no other (much better than mine now, which seems to be going downhill fast), is fascinated by bugs, loves loves loves her Music Together classes ("Songs!" is her first demand upon arriving in her car seat), is outgoing to a fault sometimes (I think she has scared other little kids more than once by barreling up to them and saying "hello" or "hold hand" if they are older kids), would stay in a bathtub overnight if it was allowed (but would demand "more water" intermittently during the night), and has just discovered a love for KidsPark.

Overall, I would say we're living a pretty normal life considering our daughter has a heart from another baby beating inside her right now...she takes medications (only five now) three times a day, she has to have an echocardiogram done about every two months now (something I have never had done in my lifetime - and probably something most of you have not ever had done) and a heart catheterization done about every four months now (something which terrified me the first time she had it done, but has now become quite routine) and we have to be careful of germs, especially during flu season (and flu season cometh...very soon).  Other than that, we're pretty run of the mill.  And that normalcy is pretty much a miracle!  Our miracle...

Second Annual Heart Workup Tomorrow

Tomorrow morning we'll be at Lucille Packard Children's Hospital for Bean's second annual transplant workup.  This is where they do all the same things they do at all her other biopsies, plus they check heart pressures and for narrowing and/or hardening of the arteries.  The cath takes a bit longer than normal, so the recovery is also a bit longer than normal, which can make for a long day.  But, it does not require an overnight stay, which I am thankful for.  I am interested to see if Bean will be any more accepting of the appointment this time.  Last time, she was a real bear to deal with during the hour and a half of pre-op we have to do.  I am hoping she is a little less of an angry Bean tomorrow, but I am not holding my breath on that one!

I did an event in Oroville for the California Transplant Donor Network this week.  It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered.  I worked with a couple whose son was a donor 11 years ago.  Their story was so touching and they are truly amazing people.  Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento.  They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no.  He thought it was wrong.  His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it.  A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart.  And they are obviously huge advocates for organ donation now.  Their son was the first Latino in 10 years to donate his organs in that organ procurement area.  Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory.  His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States.  Here is a picture of us in front of the one he had displayed at the health fair:

They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things.  If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them.  They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.

So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.

Heart Birthday Number Two

Tomorrow marks Bean's second "heart birthday".  She was born on 2/19/09, but she received the gift of life on 7/7/09.  Last year we had a little celebration with balloons and cake, but this year, I am on the road visiting family, so we will probably only mark the day in a small way.  But, I wanted to be sure that I posted here and told everyone reading this to please say a prayer and give thanks to the family that so generously made the decision to save lives that day in July 2009.  I know that they will mark this day (or one in close proximity to it) in a much different way and I want to always remember that.  I am so thankful for each day I have with the Bean.  These last two years have been such a gift to us.  And I believe that Bean has been a gift to others as well, and I hope she will continue to have the bright and shiny personality she has currently.

Life for and with the Bean will never be totally easy.  There will always be the meds and the doctor appointments and the anxiety of facing the unknown.  But, life with the Bean will always be totally satisfying.  Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart.  There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations.  And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life.  I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.

Yesterday was our country's birthday and Bean and I celebrated with my husband's family.  He is away in Michigan working this month, so he was not there and we missed him.  But, it was good to be with family and friends and celebrate the holiday.  Bean may have overdone it a bit:

This was at 2 p.m. in the afternoon!  She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching.  But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa!  She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention!  So, overall, it was a great day for her!

Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!).  In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall.  My original plan was to hike in 2 miles (easy, flat hike) following the  directions I found online.  But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill.  In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls.  It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience.  Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures!  I will definitely have to put more waterfalls in future travel plans!

Tomorrow we leave my in-laws and head north, but not quite home.  I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area.  Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always).  But, I will be very happy to get home next week again and spend some time in my own bed!

I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in.  I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2.  I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend!  But, we shall see!  Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:

Excited to be leaving for the pool!

Looking like a little surfer girl!  Chico may be inland, but this is definitely coastal wear!

Drying out and warming up after her first swim in a "big" pool!

She obviously isn't the only family member who loves the water!

Relaxing a bit with Daddy before he leaves for work for five weeks!

Working on our summer gardening venture...

In the pool with Theresa...she has progressed to NOT wanting help when in her floaties!

Playing with her Busy Bugs set and lovin' it!

We have been busy bugs ourselves these past few weeks and summer is flying by (where did June go?!?).  We hope to get in a few more great experiences, reap the bounty from our gardening attempt, and even catch a wink or two of sleep along the way!

Life With Bean...Long Needed Update

Hello out there!  Its been too long since my last post and we've done so much, I couldn't possibly cover it all.  So, I am just going to cover our most recent doctor's appointment in this post and then will try to do some backtracking for you this week.

Yesterday we had a heart clinic appointment at Lucille Packard (LPCH).  The appointment went pretty well considering Bean has now begun to realize that hospitals are not amusement parks and she is probably going to get poked and prodded.  We had to start off with a blood draw, which we usually try to have done here in Chico because the woman who does it here has the magic touch with Bean's somewhat belligerent vein...she can always get blood on the first poke without having to dig around.  At LPCH, amazingly, considering how large the Children's Hospital is there, we have to go to the adult side of the hospital and they always have problems.  The last time we went there, the woman dug around in one arm for about three minutes, never getting any vein and then proceeded to the second arm, dug around there for about the same amount of time before hitting any vein.  It was horrible.  This time was considerably better.  Thanks to the woman at Chico, I no know that one arm is much easier to find vein than the other, so I offered that one up and she did have to dig around a bit, but probably only for 60 seconds or so before hitting vein.  Whew...Bean was still screaming bloody murder the entire time, but it was much shorter than the last time.

The biggest problem with starting the day with a blood draw is that Bean becomes convinced that everyone she comes into contact with during the day is going to stick a needle in her.  So, she screamed while we weighed her.  I had to wrestle her down to get measured.  Thankfully, the echo rooms have TVs in them and we hit during Mickey Mouse Clubhouse, so she would get distracted by that, then every once in a while she would realize where she was and start writhing and screaming... The echos probably take 30-45 minutes, but it seems like hours that you are stuck in there.  I have to hold her down because she tries to roll over to avoid the little tool they use or she takes her hand and pushes them away as hard as she can.  And she is getting stronger.  But, we survived.  I always feel bad because I know people can here her screaming up and down the hallway and out into the waiting room - and the echos are not at all invasive.  But, she HATES being held down or restrained in any way, so she hates the echos.

Finally, we got everything taken care of and I was excited to see Dr. McDreamy was back and would be her main doctor this visit.  Sure its ridiculous to call him that, but he is very cute and heck, I have to find something good about these visits!  We also got to say goodbye to one of my favorite fellows while Bean was in the hospital.  She was the one who wrote these orders in Bean's chart:

"decrease vent rate to 26bpm and give Mackenzie a kiss to make her feel better."

She was so awesome!  She is returning to North Carolina where she went to school and they are lucky to have her.  I'm sorry we won't see her anymore, but I will truly always remember her and be thankful for her being our fellow.  

So, back to Dr. McDreamy...he examined Bean, looked at all her records, asked all the regular questions and then Dr. Chin, the head post-transplant cardiologist who oversees everyone who works with Bean came in and they had a little chat about her rejection status.  When it was done, Dr. Chin left and my hubby asked about the repeated 1A status.  He was super honest and said that they really don't know...because pediatric transplants are so new and the medicine regimens have been changing as medicines get better, etc. they really can't say what a repeated 1A rejection means.  He did explain, for the first time that I can remember, what a 1A status means though.  It means that white blood cells are found in higher numbers than "normal", meaning that her body thinks the heart is an infection or foreign object.  But, it means that the tissue sample shows no signs of harm from those white blood cells.  So, her immune system is working, but not so well as to cause any actual damage to the heart at this point.  He said that some places would treat 1A as normal, while others would act aggressively to get to zero.  LPCH is somewhere in the middle.  And he said his thoughts are that increased medication risks damage to the kidney later on and that a large number of pediatric heart transplant recipients end up needing a kidney transplant in their late teens/early twenties due to medication.  So, he thinks if it isn't showing damage, increasing the meds is just asking for something else to go wrong later...and he said that he probably isn't much more able to guess correctly than we are about what this means long term.  I told him that I hoped he was at least a LITTLE more able to guess correctly than we were...all that med school and all...My very favorite quote of the appointment though came at the end of that discussion, when he said, "basically, we're looking at the best possible transplant patient that I've ever seen."  Which is a pretty awesome endorsement of Bean's current health at least.  :)

So, we are in the same old place we've been.  Biopsy is scheduled for six weeks from now.  This one will be her annual, which means they do all her pressures, test her arterial flexibility, plus all the normal stuff they do at biopsies.  So, it will be a longer day than normal because she has to under for longer and then recovery is slightly longer.  Hopefully all goes well though and we get that just-out-of-reach zero we've been looking for!

In addition to the appointment, we also visited my parents, who live about two thirds of the way to the hospital from our house.  They so enjoy the Bean!  Overall, it was a great visit with them and a positive appointment at the heart clinic!  

As I said, I will be trying to play a bit of catch up on here over the next week or so as we've done some really fun things and Bean is quite the character.  I wouldn't want any of her fans to miss out on her escapades!  

Thanks for reading!  To finish off, our friend Karina just got back from a trip to China and she brought back an awesome hat for the Bean.  Here are some pics of her in the hat and towards the end a cute little dress my sister made for her!

Hat from China, Bean from Chico

Papa, Bean and Grandma on the couch.

Trying to get her to show the matching bloomers...

Daddy and Bean - she's saying "cheeese"

Grandma and Bean on a walk

And...we're done...

Who's Who in the Hospital

I came across the article below in my Kid's Health newsletter (which is a great resource if you have a child with any kind of recurring health issues) and thought I would share. I remember when I arrived at Lucille Packard for the first time for Bean and the overwhelm, but also relief, when I ran into (literally could not pass in the hallway of the hospital wing) Bean's "medical team" in the PICU. I started learning the different levels of training of the people working with Bean. Some of my favorite people were the Residents assigned to her. I still see some of them who have gone on to do fellowships at LPCH. And may of the fellows are still there, although now that we are not actually in the hospital for rounds, we see them much less often. In fact, at our last heart clinic visit we got to see my very own Dr. McDreamy (its ok - my husband knows about him) who gave me the report on Bean's first biopsy at LPCH. I believe he had just started his fellowship in cardiology then and he dropped by to see Bean last week and was amazed to see how big she was and how great she looked (the hospital is the only place people are constantly commenting on how "big" she is). It really does seem like a "team" in the true sense of the word when they are all working together.

Anyways, if you have been or will be visiting any teaching hospitals or have a child with an ongoing health condition, the following article will give you a list of professionals with whom you may have dealings. Knowing the possible resources is half the battle if you are placed in a large hospital setting. I must say that LPCH was very, very good about educating us on the resources available to us, but I have heard of others who were not so lucky. So, being able to ask about getting a visit from a Child Life Specialist or an evaluation by a Palliative Care Specialist is something you may not think of without some knowledge on why you may want to speak with one of those individuals. It also helps to know who is making the decisions, who has oversight for care, and who is talking to who and how often to make sure that you understand all of the different voices that are being heard on your child's behalf. And finally, being confident enough to listen closely, ask questions and have (educated) opinions is something that made me feel better throughout the hospitalization with Bean. I am glad that I was trained in communication and felt confident in my ability to listen to things, process them and ask effective questions. I realize that many parents don't feel that way. I also realize that some parents may feel defensive about things because of a lack of confidence in their own understanding. So, a little knowledge can go a long way to alleviate some of that defensiveness and give a parent back some of the control they feel they lose when you enter the hospital setting.

I am so glad that we have not had to have another hospital stay in quite a while and I hope that we will never have to have one for more than a couple of days in the future (that is a hope against hope I think, but who knows?). But, I am also glad that I can now enter the setting when we need to with a knowledge and confidence that will allow me to be an effective advocate, a comforting caregiver and most important, a good mom to Bean. I hope that if you find yourself (or if you know someone who finds themselves) in this situation, that the following information will be beneficial.

Who's Who in the Hospital

More Medical News - All Good So Far...

Hello out there!  Its been a while.  This past month, as is usual for me, has been a whirlwind of activity (travel for speech and debate every weekend, a new semester starting, illness for a week at the start of it, etc.) and I am glad to have February behind me.  March is looking only a bit better, but every day puts me closer to surviving the craziness.  In addition to all the work craziness, Mackenzie had two appointments last week at Stanford.  We were finally able to see an endocrinologist there and they seemed very happy with her growth progression.  Although her height and weight is still not "on the charts" (which means it is below the 3rd percentile for her age group), she is staying on a normal curve - it just falls below the 3rd percentile curve.  They said that considering her health history, this is actually very good.  They were a bit concerned with her head size being in the 75th percentile.  The girl's got a melon on her - that is for sure.  But, it does run in the Peterson family to have big heads and its always been big.  They are also concerned a bit with her breast tissue growth.   She has had some lumpy growth in her breast since she was in the hospital, but as this WebMD article says, this is often normal in babies.  So, they have not been too concerned, but the size was at least a little concerning to them, so they said they would do a blood test for hormone levels.  If they come back normal they will leave it up to the transplant team to decide whether to check out her head or not (they did an ultrasound via her fontanel after the transplant and all looked good other than some vascular enlargement that they were not terribly worried about). 

Since her fontanel is close to being closed now they would have to do an MRI to check it now and that requires her to be knocked out.  So, we'll be watching and waiting to see if we have to do that.  The hormone test consisted of her getting a shot (which she was not very happy about) and then waiting 40 minutes and having blood drawn.  The shot is designed to send a "pulse" of hormones out, and they read the maximum level of those 40 minutes later to see if she is producing too much hormone.  It takes two weeks to get the results, so we are now waiting.  They seemed to think that with no other signs of issues with hormones, that she probably is fine, but they wanted to be sure.  So, overall it was a very positive visit.

We also had our heart clinic visit and that was very positive as well.  Her echo continues to look great, she weighed 21 lbs. 7 oz. and she is now 29 inches tall!  She told Nancy, our transplant nurse, to "get out" when she came in the examination room, but soon warmed up to her and her Mickey Mouse watch that plays "Its a Small World".  She is growing to hate the doctor's appointments though.  I fear what the next year or so holds for us - while she is too little to really rationalize the visits but big enough to really protest everything.  Nancy is so great though - she got her to let her take her blood pressure by letting her push the button to start the machine and count with the numbers as they were going down.  It was fantastic to watch because Bean is very stubborn, but was willing to cooperate because she was involved in the process.  Nancy is just great.  So, I'm glad she didn't get out when Bean told her to!  :)

We are now on schedule for another biopsy in six weeks and are hoping for another zero, which would allow us four months before her second annual exam (what?  I can't believe its that close to two years already) and then hopefully if all looked good we could go to a six month biopsy schedule!  What a relief that would be.

Other than that, Bean has been doing great.  She is saying a ton of words (repeating after everyone and everything).  She loves baths and brushing her teeth.  She has grown out of her six month clothing and is now moving through the nine month clothes into twelve month clothes!  So, she's only a year behind on the clothing size time line!  :)  She recently went to the snow near our house and visited the fish farm.  Pics below! 

Welcome to Heart Month!

February is many things to many people.  The second month of the year, Valentine's Day month, Black History month.  But, since the discovery of Bean's heart defect, it has become American Heart Month for me.  It seems like all things point in the direction of paying special attention to the heart this month - Valentine's Day revolves around hearts, Bean was born in February (the 19th to be exact - and almost two months early, so this was not the original planned date), Bean had a heart problem that required her to get a new heart...so, I will be spending some time talking about heart issues this month on my blog!  Not all of it will be health related, but a lot of it will be.  So, hopefully you will find it in your heart (pun intended) to read along and maybe you'll even learn a little something here and there. 

Next week is Congenital Heart Defect awareness week, so I will save much of my pediatric heart information for then.  This week, I was thinking I would just focus on heart awareness.  So, today, to get the ball rolling, some background information on American Heart Month.

Congress decided in 1963 to require the President to deem February American Heart Month each year.  The American Heart Association led the efforts to get it started.  The focus for the American Heart Association is to build awareness and to raise funds for research and and education.  According to the CDC, heart disease is the number one killer in the US and on average, every 25 seconds an American will have a coronary event.  And that isn't a night out or a birthday party, but a stroke, heart attack or other interruption of normal cardiac activity, often severely debilitating the person suffering it or resulting in death. 

The bottom line is a need to take care of your heart.  The fact that Bean has someone else's heart beating inside her little body still amazes me to this day.  In honor of her donor and her donor family, I want to make sure she takes good care of that heart.  I realize that I need to model behavior for her if I want her to do the things she needs to do.  It isn't complicated stuff really, but I definitely have neglected many of the things I should be doing.  So, in honor of American Heart Month, I am renewing my commitment to living a healthier life.  I made an appointment for a physical on Monday, where I will get all the battery of tests performed.  I am also trying to lose some weight. 

So, I challenge any of you reading this to think about what you will do get more heart healthy this month.  In the interest of aiding you in that effort, I will focus my next post on providing a number of different ways you can easily achieve the goal of improving your heart health!  So, tune in if you're interested in making changes but are not sure about just what you should do!

Here's to your, my and everyone's heart health!  Let's reserve donor hearts for those with defects by keeping healthy hearts healthy when possible!