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!   

I Have Bad News and Good News....

Which do you want first?  Don't you hate when people say that?  I do...but, in this case it is true.  I'll do the good news first...and tell you that the bad news isn't really THAT bad.  It is more what I would call disappointing news than BAD news...Bean's annual workup showed that her new heart is working well and that the arteries seem to be holding up quite well.  All of which is great news...and to accompany that great news, here is a picture of Mackenzie after her pre-op Verced...feelin' pretty giddy...

Now to the bad news...(to visually represent this, I give you Bean after the cardiac cath, when she woke up with a Kedamine hangover that made her very, very grumpy and difficult to console):

So, the disappointing news was that she is once again at 1A status.  This is not devastating news as it is the lowest category of rejection, but in the end, it is still rejection and that is not good news.  She has only had one zero, which means she has pretty much been in some level of rejection almost the entire 13 months she has had her new heart.  So, we are back on the treadmill of changing the anti-rejection medication dosage, blood tests (next week), clinic appointment (one month from now) and biopsy (two months from now).  We were really hoping to get on the more regular post-transplant schedule of spacing out clinic appointments and biopsies by six months or more, but such is life and we will take it as it comes as long as the Bean is healthy and well. 
In addition to the 1A news, they also found her magnesium level to be very low (a chronic problem with her - and she already is on a pretty big dose of magnesium three times a day, which causes diarrhea, hurting her chances of gaining weight and also possibly ridding her body of the anti-rejection medication before its fully absorbed).  So, they decided to give her an IV treatment of magnesium while she was there.  This meant a four hour short-stay unit visit with an IV attached.  Bean was already ticked off because we were trying to restrain her to keep her arterial line site from bleeding (the line was out post-surgery, but we're supposed to keep her leg straight and vertical to prevent it from "leaking") - she hates being restrained and really wanted to be held.  After a while I picked her up and held her a few times because her crazy kicking and rolling moves HAD to be more threatening to the site than my holding her vertical for a few minutes...but it was a long and arduous couple of hours of trying to maintain her position.  Then she had this additional line going in which she kept wanting to remove (for those of you who were Carepage followers, you might remember her early experiences with removing tubes - ventilators, IVs, central lines - she's done it all).  So, the short stay nurse put socks on her hands and taped them down and she thought that was pretty special and proceeded to parade about the short stay unit clapping her socked hands and waving with me or her aunt behind her carrying the IV pump (those are my feet in the background):

So, we are back home again, with a lot of upcoming appointments - pediatrician, endocrinologist, PT and developmental therapy this week, blood draw next week, GI appointment the week after, now a clinic appointment two weeks later, and a biopsy the middle of October.  We are also working on scheduling an appointment with the regional center's nutritionist and occupational therapist to get her eating evaluated.  Its like a full-time job just figuring out my schedule!  :) 
I would like to end on a good note...according to the pre-op scale, Bean gained 9 oz since last month.  I'm not sure that its accurate - I'm interested to see her weight tomorrow at the pediatrician, since it will be the same scale as last time.  Hopefully its even MORE weight gain...but, I'll take the 9 oz.  And finally, a fun picture from Bean's first swimming experience this past weekend in the hotel pool...hope you all are well!

Summer is Officially Over! Annual Heart Cath Tomorrow

And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule!  But, its now officially over - I start back to work on Wednesday with meetings and office hours on Thursday and then classes begin on Monday.  So, I plan to be posting on a more regular basis now that I will have to have a schedule of some sort and I will fit blogging into that schedule.  I will do another post (or posts) with some recaps from our summer and all of our adventures - of which there were many!  Bean has totally changed since the last post in June!  She now has a lot more teeth (although still not many in the very front - she has two on the right top and one just barely breaking through in the middle bottom, but the rest in the front are still hiding out)...she is walking everywhere...and although she is not really talking yet, she makes animal noises like a champ!  She has been a walking, babbling baby for the past two or three weeks and it makes her a barrel of fun to be around! 

Tomorrow is Bean's annual heart cath.  Although she has had many heart caths, this one is a little more extensive since it is her "annual".  Her regularly scheduled caths include the biopsy for rejection, but her first one included a coronary angiogram - this one will repeat that test to make sure that she is not suffering from rejection issues that may be more long-term than the biopsy is designed to test for.  She is on medication to lower these risks, so our hopes is that they detect none, but she will have this done every year for the rest of her life to catch any problems early on.  We are hoping that she will repeat the same zero for rejection that we had last biopsy and all will look good - that will mean less clinic visits and more time between the heart caths, which would be great for both her and us!  The drive to Stanford is long and with the hospital visit tucked in there, those days are extremely tiring - so the fewer we can have, the better! 

In addition to that, we have our first endocrinologist appointment this week - where we might find a source for her lack of growth.  No guarantees on that front, but it is possibly a hormonal issue which they may be able to solve.  I am getting used to her petite stature, but it would be nice to get a little fat on her before winter and cold/flu season rolls around as that fat is her reserve if she gets sick.  We dodged the bullet this past winter, but she was not nearly as active as she is now, so keeping her isolated will be much tougher this year.  So, figuring out how to have her gain some weight would be great.  She is 18 months old and is wearing mostly 3-6 month clothes (some pants have to be 0-3 months - others even newborn, although they look like flood pants, they fit her best in the waist).  We are getting lots of wear out of her clothes, but we'd prefer a healthier weight!  She is still seeing her developmental therapist through the Far Northern Regional Center, and will soon be consulting with the nutritionist and the occupational therapist about her eating - just to cover all our bases.  We got good news from the eye doctor (she has a "lazy eye", especially when she gets tired) - no surgery!  She may need to wear glasses because she is far-sighted (how they can tell that in a baby I will never understand), but he is definitely not advising surgery for her.  Such a relief...

I think that about covers this week in the life of the Bean.  Again,  I plan to do some "What I did this summer" posts as school gets started (just to be able to revisit summer will be good for those first few weeks of total chaos at school) and I plan to do some additional posts on health, medical and educational resources for parents.  I'm sure I will come across some other things to post about as well!  So, stay tuned!  We should get some basic results from her cath tomorrow afternoon after the surgery, so I will try to get something posted then, but it may have to wait until Wednesday when I get back home...it all depends on internet accessibility!  Either way, I will update in the next couple of days!

I hope you all had a great summer and are looking forward to a good fall as well. 

Teeth, Feet and Food

Note: I spent a while writing a post and then lost it during the posting process...a little frustrating! Hopefully I remembered to include everything in the replacement post below!

Sounds like a pretty horrible combination doesn't it? Well, its all HAPPENING at the same time, but are not necessarily related! Bean has had one tooth in the side front of her mouth for a while - we have taken to calling her snaggletooth because of it. But, she is now getting a few molars in the back and it has definitely been a bit of a pain for her over the last week. Luckily she has not run any fevers and has only has had a slight runny nose for a couple of days. So, overall it has not been too bad. But, she has definitely been more moody and has not been sleeping all that well. All of her teeth are one side of her mouth right now and they aren't really lined up at all, so chewing is an issue for her. The order in which her teeth are coming in is also strange - usually kids get their front teeth first. But, post-transplant Bean was on Cyclosporine for anti-rejection medication. The medication has a number of side effects, which includes thickening of the gums. So, this could be the reason we aren't seeing any other teeth yet - a mom on one of the transplant email lists I'm on said it took her son nine months after getting off of Cyclosporine for his gums to recede enough to see his teeth (they were there, just under the thickened gum). So, hopefully, we will see more teeth soon. She came off of Cyclosporine in late October/early November. It would be nice for her to be able to chew her food!

And hopefully she will start getting more excited about the prospect of chewing food! The GI docs put her on an antihistamine to stimulate appetite, but it doesn't seem to be helping with her food intake. For a while, she was a pretty good eater - she liked cereal (both baby and Cheerios), sweet potatoes, carrots, yogurt. And she ate pretty good two or three times a day. But, she has now started to refuse to eat from a spoon. Finger food only. Which would not be bad if she had teeth to chew the finger food, but as it is, she eats very small pieces, very slowly and often tosses many pieces over the side of her chair to our dog. So, her intake is not very much for each meal. Because I don't know if this is just a phase she is going through or some oral aversion she has developed, I have requested an occupational therapy evaluation from the regional center. Her cognitive therapist says she definitely has a slight tactile sensitivity. She gets anxious when she is on grass because it pokes her, she refused to touch a spiky gel-type ball toy the therapist brought a couple of weeks ago and she HATED pudding painting because of the pudding on her hands. I figure its worth getting her evaluated to make sure there isn't some aversion we should be dealing with early on. Luckily she still loves her bottle and drinks formula well, so she gets plenty of calories and nutrition that way. And she is still small enough that her drinking a bottle doesn't look ridiculous. But, at some point, I would like for her to be eating more food and drinking less formula! Really, we are lucky considering she was on IV feeds for most of her first six months of life. A lot of heart kids have to keep feeding tubes in because they don't adjust well to eating after so many months without it. But, I would feel even luckier if she were eating food better!

Finally, her feet. Don't worry - they have nothing to do with her food! She just took her first few steps the other day and I thought I would include a short video! Enjoy!

California Heart Connection Picnic Coverage

Although I was not able to go this year, I am really hoping to attend one of these picnics in the future (when Bean is a little older and can actually enjoy the activities and social connections).  The California Heart Connection, a group started by two heart moms in Southern California, hosts an annual picnic for the families of children with Congenital Heart Defects.  This year's picnic was the 10th one hosted by the group, with 80 families in attendance.  The picnic offers families a way to connect with others who are going through similar experiences, but in a non-clinical setting.  Its a great opportunity for both parents and children and a nice article was written about it in the Orange County Register, "Hope and help for ailing hearts."

In addition to hosting the picnic, the California Heart Connection has some great resources available on their website, ranging from help with insurance, support groups, printable forms, reports on research, etc.  It is not only applicable to those in California, but much of it could be helpful to anyone dealing with a CHD!

Positive Developments for HLHS Babies

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complicated and serious congenital heart defects out there.  Treatment includes a series of surgeries, the first coming almost immediately after birth, called the Norwood procedure.  If this procedure fails, a transplant is necessary.  A new study shows hope for reducing the number of deaths and transplants needed in children born with HLHS.

The study, conducted at the Children's Hospital of Philadelphia, compared results between the traditional surgery - "a modified Blalock-Taussig (MBT) shunt, which carries blood from an artery branching off the aorta to the pulmonary artery" - and a new procedure - "he Sano procedure or the right ventricle-pulmonary artery (RVPA) shunt, links the right ventricle to the pulmonary artery".  The results were promising, with a 74% of infants with the RVPA shunt surviving and not needing transplant compared to only 64% of those receiving the traditional surgery.  These results are promising, although work needs to continue as the RVPA showed a higher rate of complications requiring "unintended interventions, such as needing stents or balloons to keep the shunt open."  But a 10% higher rate of survival without transplant is pretty promising.

For more information, you can read "In Infant Heart Surgery, Newer Technique Yields Better Survival in First Year of Life," at Forbes.com.

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!