November 17, 2009

Preemies Deserve a Voice…

Posted in Cardiomyopathy, Health, Hospital Life, Itty Bitty Baby News, Preemie Development, Research and Development at 7:11 pm by bk2nocal

Today is Prematurity Awareness Day and I am participating in the Bloggers Unite “Fight for Preemies” campaign. I figure I will share my story and encourage those of you reading to explore the March of Dimes website for more information on how you can get involved and help the cause.  It may surprise you to find out that the US “scores a “D” and fails a half million babies each year” according to the March of Dimes.

My pregnancy was nothing special.  I was pretty normal in every way except for a creeping blood pressure that seemed to get higher and higher as the pregnancy went on.  My doctor was concerned, but not overly fearful until I went in for my 32 week appointment.  My blood pressure was elevated even more than before and the baby’s heart beat was showing some irregularities.  At first, he was going to send me home and have me report to the hospital the next morning for further fetal monitoring, but just as I was getting ready to leave, he decided that I should go to the hospital immediately to “play it safe”.  So, my husband drove me over and I was hooked up to a fetal monitor.  The heart beat continued to show irregularities and after a couple of hours, my doctor came by and told me that he was going to have me airlifted to Sacramento where they had a NICU available “just in case”.  Both my husband and I were struck with fear.  This was our first, and probably only, pregnancy (I am “advanced age” at 41) and we could not imagine losing our baby – and my husband was worried for my health.

That night, I was flown via helicopter to Sacramento, where I was once again hooked up to a fetal monitor.  My sister met us there and the doctors said that I may have to remain in the hospital for up to two or three weeks while waiting to give birth.  The hope was to “keep the baby inside as long as possible”.  The next day there were doctors in and out and in and out and finally in the afternoon, they said that the heart beat and my blood pressure were not recovering, so they were going to go ahead and take the baby C-section that night.  It was February 19, almost a full two months prior to the due date.  We were visited by a nurse who gave us the low-down on what to expect from a baby only 32 weeks along – and none of it was terribly comforting.  We were past the most crucial point in the pregnancy, but there were still possibilities for difficulty breathing, problems with eyesight and/or hearing, etc.  We were prepared for the worse when I rolled into the operating room that night.

Mackenzie beat the odds – she came out breathing on her own and was able to maintain that state.  She was on oxygen for a little while, but in every other way, she did just fine.  She was only 3 lbs. 2 oz., which by preemie standards is pretty big!  🙂  She had to have an IV and receive her food through a tube.   But, she checked out as having all her internal organs developed normally and she progressed along quickly.  My husband and I stayed with my sister and spent hours and hours at the hospital, scrubbing in to the NICU, helping with diaper changes, temperature taking, bathing and feeding.  We practiced breast-feeding and bottle-nippling all under the bright lights of the NICU, with Mackenzie in an incubator for most of the three weeks she was in the hospital.  At three weeks, and weighing just under five pounds, Mackenzie was released.  We were so excited to bring her home, even though we were woefully unprepared.   We had no bassinet (thankfully, our friend bought us one as a gift and had it ready to go), we didn’t have preemie clothes (again, my sister and friends bought us enough to get us going – my first baby shower actually came while she was still in the hospital!), but we were excited to be bringing her home.  We had medications to give her, strict rules on washing up before touching her (preemies have underdeveloped immune systems) and routines for taking her temperature each day to check for infection.

We did well for three weeks – we had weekly pediatrician appointments and we didn’t leave the house much for fear of exposure to infections, but she seemed to be doing well.  Then, in the third week, she started to have some problems breathing.  At her regular check-up we pointed it out and the pediatrician told us to just keep an eye on her.  When it seemed to get worse overnight, we made an appointment for the next day.  She was tested for RSV – a viral infection that she received a shot for before leaving the NICU – and the result was negative, but the pediatrician sent us to the emergency room immediately “just in case”.  She was tested again there and the result came back positive this time.  She was admitted and put on breathing treatments and I moved in to the hospital room with her.  We spent a week there – uncomfortable, exhausted and just plain depressed – she didn’t seem to be getting any better.  Finally, on day five, they decided she may need to be intubated and she was put on a helicopter to Sacramento (same nurse flew her down that flew me down for the pregnancy) and my husband and I got on the road to drive the two hours.

We received a phone call about an hour into the trip from the admitting doctor in Sacramento and he verified he was going to have intubate her and asked “has anyone talked to you about her heart?”  My own heart dropped.  He went on to say it was five times the normal size and it was sitting on top of her left lung making her breathing very labored.  We were left to wonder what all this meant on the rest of the drive down.

We soon discovered that she had this thing called Cardiomyopathy and that she was, as the doctor in Sacramento put it, a “very sick little girl with a very sick big heart”.  They went back and examined her X-ray that was taken in the NICU and because X-rays are easily distorted in little ones if they take a big breath, it was difficult for them to tell if her heart was enlarged at birth or not.  It had obviously gotten bigger since then either way.  But, now she would have to be on a ventilator for weeks.  Long story short, she was treated with oral medication, but failed to recover and ended up having a heart transplant on July 7, 2009.

I would like to know that every baby born, especially preemies, are tested for congenital heart defects!  These little ones are struggling enough when they come into the world, they don’t need a missed heart defect to make things more difficult.  This NY Times article talks about the “pulse oximetry” or “pulse ox” as they call it in the hospital and the findings of a study that shows it can be especially effective in catching and solving a heart issue in a newborn baby.  Although this is not just a preemie issue, I feel that it is something that can help a lot of preemies who are fighting a fight they can’t win without timely intervention.

So, let’s give all babies a voice and get these tests done – request it for your baby or tell a friend to request it for their baby.  And if it shows any abnormalities – get a closer look!


November 13, 2009

New Assist Device Brings Joy to One, Hope to Others!

Posted in Berlin Heart, Research and Development at 9:33 pm by bk2nocal

A while back, I wrote this post about a new assist device that was being researched, the Synergy Micro-blood pump.  Today, on the CCF email listserv someone posted this news story about a teen who has been given a new sense of freedom while he awaits a transplant.  This device, the HeartMate xVE, is the first one offering patients the chance to GO HOME while awaiting a transplant!  This is truly a miracle for those who could only look forward to sitting in a hospital bed with a large, cumbersome device to drag around with them if they were to go anywhere in the hospital.  And the fact that these devices could last up to a decade is amazing!  In 2003, 450 people died (out of 2000 on the waiting list) died while awaiting a heart.  These devices can provide an extension that offers both quantity of time and quality of life.  That is an amazing gift!


Where did the month go?

Posted in Habits, Health, Itty Bitty Baby News, Organizing at 6:54 pm by bk2nocal

I can’t believe it has been almost a whole month since I last posted here.  I apologize for my absence, but its been a little hectic around here.  With all the unpacking (which isn’t nearly done yet), trying to stay caught up at work (which I’ve pretty much been failing at), trying to establish a new routine now that we are home (I have one written up, but can’t seem to stick with it), and just plain being tired all the time, I can’t seem to catch my breath.  I wonder sometimes if it is really that I have that much to do or if it sometimes is just that I don’t want to do what I have to do (I know the latter is true at least part of the time).  I know that those of you reading who have had or do have sick kids can relate to the fact that life becomes a sort of treadmill.  The medications, the doctor’s appointments, the constant worrying about their health (is that just a sneeze or is it the start of a cold?  is that just a regular cry or is there something more to it?)…it all becomes a little overwhelming sometimes when you realize that you can NEVER get off of this treadmill.  Its constant and it will continue for the rest of their lives.  And we’re relatively lucky.  We don’t have a feeding tube with scheduled feeds, we don’t have infusions to do, we don’t have special food…but we have is enough to sometimes put me on edge.

I think part of it was that it was easy at the RMH.  Everyone there was going through the same sorts of issues.  There was nothing strange about our schedule or our inability to go shopping with her or take her around other seemingly healthy babies.  But, then you get home and when you’re out and about you see everyone else with their kids in tow at the mall or Target and you realize that you have to plan ahead for these trips to do them without her because you’ve received your letter of warning about flu season and going to crowded locations.  At least M isn’t in school.  The letter also advised all transplant patients to home school until flu season is over and home school siblings until flu season is over.  At least we don’t have to worry about how to make that work.  But, its been a tough month of adjusting.  I had a little breakdown the other night because she sneezed more than usual that evening and then awoke in a screaming fit of what seemed like epic proportions…I immediately flashed back to our last midnight trip to Stanford from my sister’s house, with her breathing labored and her temperature spiking and I broke down.  She wasn’t even running a temperature it turned out and I think she just woke up ravenously hungry (I think she is going through a growth spurt) and wanted to eat.  But, I was tired and I panicked and I just couldn’t catch my breath or stop my sobbing.  Even once she had calmed down, I still couldn’t shake that feeling of panic.  I knew it was totally irrational, but I still couldn’t stop it.

I am doing my best to set up some routines so things get done around the house and at work and for M.  Its easy to let things go and then feel like things are piling up.  And sometimes it isn’t even that there is that much to do, but that I start the day already so exhausted that I can’t get motivated to do what needs to be done.  And sometimes, I feel like I accomplished quite a bit, but for every one thing I accomplish, another five get put on my list of to-dos.  And then things come up that are not part of the already stressful plan – the dog gets bit at the dog park and needs stitches and medicines (on top of M’s medicine regimen), the car’s water pump starts to go out and needs to get fixed (on top of our already stretched too thin budgeting after lost wages), the unpacking quickly creates chaos with lost paperwork and a disorganized mind, M starts to outgrow her 0-3 month clothes, requiring I find the tub of 3-6 month clothes in the chaos that is our garage presently and wash and put all of them away (the growth is great…the finding and washing and putting away is the difficulty), M starts to eat solids requiring a new regimen of figuring out what foods and how much and when we should feed her and a realization that eating will only get more complex as she grows and we are not at all prepared for it, being people who eat out often, don’t grocery shop enough and skip meals more than I would like to admit.  Many of these things are not any different than any other parent goes through.  After all, M is still a baby, she’s just a baby with a few more requirements in her day.

So, as we draw closer to Thanksgiving and a week off from work for me (well, not exactly, since I have to travel to North Carolina for work the Thursday prior to Thanksgiving and I don’t get back until the Tuesday before Thanksgiving, but close enough I guess), I am realizing that I need to get my world at home and at work back under control.  I need to figure out a routine that works for me and my husband and M.  I need to be vigilant about taking care of myself as well as M, as I can’t risk getting sick (reminds me, I need to start taking vitamins and Airborne for this trip to try to avoid any germs that might be traveling along with me in the plane, hotel, etc.).  M has got her flu shots – both regular and H1N1, and my husband has got the regular flu shot, but I’ve got neither yet.  I need to do that before I travel as well…and better sooner since its not even effective until 10 days after you get it (guess I kind of missed the boat on that one).  I need to find all the bills I need to pay and figure out our finances after our recent car troubles and extra spending for moving.

On top of all this, I now need to start figuring out the holidays.  Where will we go (where can we go?)?  For how long?  How are we going to pay for gifts?  Who will be coming to see us?  When will they be coming?  The holidays are always a bit of a stress, but this year is going to be just a little bit worse in all aspects.

So, I have decided that I need to start making lists – daily lists – of things that have to be done – right down to giving M her medicines the three times a day she gets them, giving her the solids she gets the two or three times a day she gets them, feeding the dog, etc, etc. because I feel like if I don’t have it written down, it just may not get done.  I tried to start this earlier this week, and I would get a few things marked off for the morning, afternoon and evening, but most of the stuff has built up over the course of the week while I was unpacking stuff in the garage, organizing the baby’s room with the new (used) furniture we got this week, catching up on laundry, etc.  But, I will start again next week and see if I can get just a bit more done each day…

This weekend the hubby and I are walking a half marathon to raise money for the Ronald McDonald House.  We have not done the training we should have in preparation, but we’re going to go and do the best we can.  The worst that can happen is we don’t finish in time and we get kicked off the road prior to the finish line…but we still raised the money and we’ll still be going to Monterey for the weekend…so, its all good.  My sister is going down with us to watch M while we walk.  And then my hubby is staying at my parent’s house on Sunday and Monday with M because she has a biopsy on Tuesday morning and that will save us about 300 miles or so of driving!

Life is whirlwind and I feel like I’m getting a little blown over right now.  Hopefully, the winds will die down to a nice breeze in the coming months.  I know the winds will never fully dissipate, but who doesn’t like a nice breeze?

October 18, 2009

Moving…and an update on Ittybittybaby

Posted in Cardiomyopathy, Habits, Health, Itty Bitty Baby News at 11:19 am by bk2nocal

I hate it….but, I’m excited to be back “home”.  We are in the midst of unpacking and setting things up and M has officially moved from Pack n Play to her first crib!  Its been very exciting and she seems to like it.  I’m sure it has to be more comfortable to be on a solid surface.  She has her ladybug bedding and her ladybug lamp and a LOT of tubs and boxes in her room right now.  But, at least she has a solid place to sleep!

We had some disappointing news at her clinic appointment last week.  She just isn’t gaining much weight.  I guess I appropriately named this blog – she truly is ittybitty.  She is almost eight months old now – and even adjusted, she is almost six months old and last week she only weighed 10 lbs. 11 oz.  She is still swimming in the 0-3 month clothes.  They are a bit concerned and they upped her calorie mix again – to 30 cals per oz, but then she just wouldn’t eat.  I think it was too thick or too strong-tasting, but she just wasn’t eating much of it at all.  So, we went back to the 28 cals per oz and she seems to be eating much better now.  She has been terribly fussy and wouldn’t nap the past week or so, but she’s been carted from my sister’s to appointments to my parents and then moved up here and had my husband’s parents here the last couple of days and I think she’s just been really overstimulated.  She ate great this morning and has now been napping (at her normal time – hallelujah) for an hour this morning.  Let’s hope it continues!

I thought I would post a positive article to end this today and I hope to be posting more regularly now that we are settled!

October 10, 2009

Voice from the Past…

Posted in Health, Hospital Life, Itty Bitty Baby News, Transplantation at 10:03 pm by bk2nocal

I realized that I have been derelict in posting here…so, I wanted to catch up a bit.  But, my mom went into the hospital today for high potassium levels and erratic pulse and EKG, so I’m going to post my last carepages update here at this blog…this is from September 29.  M has since not only got out of the hospital, but we were officially “discharged” from LCPH and the RMH this past week.  We are still moving stuff out of the RMH, but will hopefully complete that process tomorrow and be living with my sister in Davis until we find a place to live.  The title of this Carepages post was “The Year of Living Fearfully”:

That is what I feel like we’re doing right now – having the year of living fearfully. Everything tends to be scary when you’re unsure if your daughter is in rejection or not in rejection, getting some illness due to immunosuppression or not getting some illness due to immunosuppression, at the right level of medications or not at the right level of medications. There are so many “what if’s” running around your head all the time that when something goes wrong, it can feel like the whole world is coming down on you. That is what happened early on Sunday morning…just so you don’t have to live fearfully until I finish telling the story – all is fine now with Mackenzie…

On Saturday, Jason brought Mackenzie to my sister’s in Davis to visit since I had been sick in Chico the entire week before that. I drove down and we were going to stay the weekend there and then go our separate ways for another week of work. But, Mackenzie had other ideas. She was a little fussy all Saturday night, restless instead of restful sleep, a little warm (but it was hot in Davis that day/night), etc. At 4 a.m. she woke up for a third time, I fed her a little and she remained fussy, and then she threw up all over (a relatively rare occurrence now that she has a new heart). We took her temp and it was 101.7, so we called Stanford and they said to drive her in to the Emergency Room there and they would check her out. So, we left my sister’s and drove the hour and a half or so to Stanford. Mackenzie slept most of the way, but the one time she woke up, she dry heaved/spit up a little and seemed to be in labored breathing afterwards. It was pretty scary, but luckily, we were within 20 minutes of Stanford when that happened. I think both Jason and I were in full panic mode by this time, and our hearts dropped when the labored breathing started.

We got her to the Emergency room and the cardiologists on call (Drs. Lewis and Hollander – both of whom we know quite well after being in the hospital for so long) came in almost immediately, said she looked pretty good and they would start running tests on her. The fact they said she looked pretty good just goes to show how much we have come to expect Mackenzie to be healthy already! To us, she looked horrible! I guess this is a good thing though! We don’t think back to what she looked like before the operation…they both said “Wow, she has gotten so big – she looks like a baby now! Good color!” They began drawing blood, etc. and put her on the machines to track her vitals.

We were in the Emergency room that day for about seven hours waiting for a room on the third floor to open up. They swabbed her for flu/respiratory virus, tested her line for infection, etc., etc. They finally gave her Tylenol (I think this was just a mistake on their part – they may have thought we had given her Tylenol before we left home) when her temp hit 103 and within 30 minutes, she seemed to be feeling better, her temp was going down, etc. So, lesson learned…we need to have some Tylenol at home to give her when she runs a fever.

They did an EKG and when we finally got a room on the third floor, Dr. Hollander did an echo and all looked good with her heart. They think it was just a “normal baby-thing – they get temperatures or stomach bugs every once in a while,” but with a heart baby, everything normal becomes a huge scare! Hence, our year of living fearfully. I am hoping that after a year, this fear will somewhat subside. I think its made worse right now by the fact that we don’t know where Mackenzie is rejection-wise right now. It will either be made better or worse by the results we get this week. It is good that her heart seems to be functioning fine, but its still a constant worry that she could be in rejection and not show any real symptoms.

Mackenzie should be getting out of the hospital today as long her cultures from her line come back as clean. It seems that this was just a normal, baby thing and we should not be overly concerned. She will still get her biopsy on Thursday and we will know where she is rejection-wise on Friday and we will either be settling in for a longer stay at the Ronald McDonald House and figuring out how to deal with the rejection OR (and this is the one we’re hoping for), packing to move out of the RMH and quickly finding a place in Chico to move into! Either way, it will be nice to know.

September 10, 2009

Desperation or Choice?

Posted in Cardiomyopathy, Health, Research and Development at 8:43 pm by bk2nocal

When your child gets sick, you will do just about anything to help them get better.  Sometimes this means watching them suffer through painful treatments and difficult procedures.  But, you do it in the hopes that after its all over, they will be better and no longer have to suffer whatever condition brought them to the hospital in the first place.  Sometimes, the treatments have side effects that cause equally bad health problems.  For example, I have met two children in the last three months who have contracted cardiomyopathy due to treatments for leukemia.  The medicine did away with their cancer, but in the process, it caused their hearts to enlarge and stop working well.  One of them contracted it when she was 2 and did fine on medication until earlier this year, when, at the age of 15, she had to have a heart transplant.  One of them is only two right now and just found out about the cardiomyopathy.  She is in remission and the cardiomyopathy seems to be controlled with the medication she is on for the time being.  But, it is yet another blow to a family that already had too much pain and illness in their young lives.

So, what do you do?  If you know that the medication can cause side effects (many of the medications M is on have some possibly serious side effects, including, ironically enough, injury to the heart itself), do you choose to not give it to them.  Of course not.  First of all, in most of these cases, they would not survive without the medication in the first place.  Second of all, with the medical advances being made, we can all hope that by the time serious problems arise, they will have solutions for those problems that are less invasive and less injurious then at present.  And hope is hope…even if sometimes that hope is tinged with fear, we choose hope.

So, it did not shock me to read in a Times article that families in Britain have begun to seek unregulated and untested stem cell treatments in China.  It is easy to get caught up in the hope, and lose sight of the possible damage.  And, at times, you wonder how much treatment restrictions are based on marketing decisions versus safety (see my prior post where I discussed the profitability gap) and how much is based on actual safety.  I know that Europe is a little less arduous in its regulatory control and cost of bringing items to market (hence the Berlin Heart being available for children there but not yet cleared in the US), but I’m sure there are still some issues with cost-benefit analysis driving medical advances.  Its just hard to know what to do, who to believe and how to proceed.

I think having a doctor you trust in these situations is of the utmost importance.  I know when I was going through the worst days with M in the hospital, I always felt like her transplant team had HER best interest in mind when making decisions.  I never felt like they gave me false hope, but I also felt like they provided me with fair assessments and all possible alternatives.  Because they are asking you to make life and death decisions based on their information, it is key to have people you totally trust giving you that information.  I think it would be worth changing doctors and even hospitals if you didn’t feel that level of trust.  Too many people stick with medical professionals because they feel “stuck,” not because they trust them.  This must be a horrible place to be.

We were lucky to end up where we did.  I had only a couple of incidents when I felt like treatment could have been better for M, and they were really driven by individuals and were remedied soon after.  I am so thankful we had and have the team of doctors and nurses working with us that we do.  I can honestly say that I can’t imagine having had a better experience in this process – its a horrible experience to have, but it is made so much better when you are surrounded by people who you can see really care and are willing to be there for you and your child.  It may be difficult, but if you are someone who has a sick child, don’t just settle for a doctor or staff you are not comfortable with – look for one that you feel is working and caring for your child and your family.  Its hard enough without additional stress.

September 8, 2009

Don’t Smoke Around Sick Kids!

Posted in Uncategorized at 7:09 pm by bk2nocal

I think this should go without saying, but obviously, I’m wrong.  I realize that addiction is difficult to deal with and nicotine is particularly tough, but think about how hard sick kids already have to work just to make it through the day…do they really deserve something else to deal with?  I have a friend who smokes and she is very good about smoking VERY little when she is around my daughter and usually only doing it right before she is going to shower so she won’t bring in smoke on her hair, her clothes, etc.  We all probably already know about second-hand smoke and its effects on children.  Infants often have lung development issues when exposed to second-hand smoke – asthma, wheezing, breathlessness.  As a parent of a child who already has some respiratory and heart issues, I can’t condone anyone ever exposing her to second-hand smoke – if someone lights up with her around, I will have to leave the area.  It may seem rude, but it has to be done.  We have a precious gift of a heart to take care of and I plan to do just that.

But a bigger issue for me, one that doesn’t seem to discussed as much, is third-hand smoke.  The Journal of the American Academy of Pediatrics had an article on this in late 2008 and American Scientist had a great article on it in January of this year.  This just means that going into places that have cigarette smoke in them (from people there before you, even if they are no longer there or no longer smoking) is bad for your child.  I am lucky to live in California where people can not smoke anywhere inside.  I am also lucky in that none of my immediate family or my husband’s immediate family smokes.  So, I don’t have to worry much about M being exposed to the toxins of cigarettes…but, I do feel like people need to be constantly reminded of the negatives of smoking on others and encouraged to quit.

I don’t want to sound preachy in this post, but my husband and I have both noticed some of the parents who smoke taking their children out to the smoking area with them.   So, obviously, it is something that could use a little chiding…leave your kids indoors when you go out to smoke.  Make sure that you change clothes and wash your hair if you’re going to be carrying a baby or small child around with you after smoking.  And if you are a caretaker for a sick child, whether that illness directly effects the lungs and heart or not, think about how strong they have to be just to make it through their illness and be strong enough to quit smoking for them!  I really feel strongly that life is hard enough for these kids, there is NO reason to ever do anything to make it more difficult for them health-wise.

Some additional articles on third-hand smoke:

NY Times – A New Cigarette Hazard

VOA News – Lingering ‘Third-Hand’ Cigarette Smoke Endangers Children

And some resources to help you quit smoking if that is what you need: – Free Resources to Help You Quit

American Lung Association – Quit Smoking – Quit Smoking

September 7, 2009

A Little Reminder…

Posted in Habits, Health at 1:17 pm by bk2nocal

I was reading one of the travel blogs I am subscribed to this morning (a way of escaping without being able to really travel right now) and it referred to an article, “Reminding Myself of What I Love”.  I thought it would be a valuable reminder to put on this blog as well.  It is very easy when you have a chronically ill child to forget the things you love.  I know that my days have been taken over by the administering of meds four to six times a day, taking blood pressure twice a day, taking temperature twice a day, keeping track of intake and output.  It can quickly become a grind.  And when it is an infant that is sick, all of this just gets piled on top of breastfeeding or formula mixing, diaper changes, baths, and tummy time.  Pretty soon, one might begin to feel more like a nursemaid then a person.  So, I think its valuable to take a step back and, as the article says, remind yourself of what you love.  Take some time to think about who you were before your child came along, before your child ended up in the hospital, before your child needed so much care at home…and figure out which of those things you can fit back in your life.

For my list, a few of the things I can pretty easily reincorporate them into my life, while some others are definitely going to be things I won’t be able to do on a regular basis for a while.  I encourage you to consider your own list and commit to working those you can into your schedule, even if its hard.  Remember, you have to take care of yourself in order to be a caretaker!


I really like to scrapbook when I do it.  But, I have this block against starting it.  It always feels like a big job to get going on a page or a project.  But, when I actually follow through with doing it, it feels great.  And looking back at the pages I create always makes me very happy.  This is something I CAN incorporate into the schedule.  It just requires me to be a little more flexible with my preparation and organization.  I need to just start a page without having everything figured out beforehand.  I think once I get going, I will definitely be hooked again.  And I have all these pictures of M’s hospital experience that need to be scrapbooked!

Music and Dance

I have been incorporating this a bit more with my four hour commute time.  I listen to the radio and my CDs.  But, I don’t have the same connection to music as I used to.  This is something from before I had M.  I used to go dancing all the time and loved music and learning new dance steps, etc.  I haven’t done this in a long, long time, but listening to the radio and CDs more often has reminded me of the happy feeling this used to give me.  I’m not sure how to incorporate dance, but music I can do.  I am going to make friends with Itunes and start burning CDs for my commutes.


I have always been a reader.  I love reading – books, magazines, blogs, etc.  This is something I haven’t really given up, but I could definitely devote more time to it.  I think it will set a good example for M if I am a reader.  I need to turn off the TV more often and read instead!


Yup, I like to play poker and go to casinos.  This is something that I will obviously not be able to do much in the near future.  Poker online is just not the same thing as in person, especially playing with friends.  We used to have a weekly game, but we moved and don’t have the same opportunities now.  Maybe we will be able to find someone when we move back to wherever our home will now be.


This one is hard.  I really miss being in shape and playing team sports or doing individual sports.  I swam, played water polo, dove, did gymnastics, played in a softball league, bowled in a league…I’ve done it all.  And I greatly miss doing those things, but its hard to get motivated because I’m so out of shape, it doesn’t seem as much fun anymore.  I know that is really defeatist thinking because you can’t get in shape until you start doing something to get in shape…so its a vicious circle.  But, I really do miss doing sports and fun types of exercise (tubing on the river, playing ultimate frisbee, etc.).  I need to MAKE myself start doing stuff to get back in shape and just get past the point where it starts to be fun again, and then I know I will be hooked.  This is another thing I really want to model for M – I want to be able to do sports with her and see her mom as fun and active.

Going to Festivals/Fairs/Exhibitions/Amusement Parks

These are just fun, outdoor, and leisurely activities that I love.  I don’t do them much anymore because (1) I’m a bad planner, so I often miss them, (2) I work a lot of weekends that they are open/fall on, and (3) my husband tends to think they are ridiculous.  But, I LOVE them.  The more local/cornier, the better.  They just seem to be places where you can really enjoy yourself without being judged.  I love people watching and these places are great for that.  I also just like to see people having a good time and these are great for that.  I really need to start following my Sunset and AAA magazines more closely and going with other family members or friends if my husband doesn’t want to go!  They are just too fun to miss out on.

So, there is a short list of some of the things I love and a little look into how I plan to incorporate them into my life despite having a six month old with a somewhat chronic condition.  It will be good for both of us if I can start doing things I really love more often!  I encourage you to figure out what it is you love and start doing some of those things more often as well!

September 3, 2009


Posted in Uncategorized at 8:58 pm by bk2nocal

One of the moms on the CCF listserv I’m on sent an article out and I thought I would share it here.  The NY Times recently had an article, “For Parents on NICU, Trauma May Last,” that discusses research that shows that parents who have babies in the NICU often suffer from Post-traumatic Stress Disorder after they bring the baby home.  The mom on the CCF listserv correctly pointed out that many of us who have had babies or even older children in the PICU (or like us, both in the NICU and then in the PICU) are also definitely at risk for this.  I think the important thing to take away from this article is realizing that even when your child gets out of the hospital and is home with you, there may be lasting psychological effects for which you should seek help.   The article is careful to point out something that may surprise some people – the PTSD is not correlated to the amount of time in the NICU or how sick the child was, but simply the parents’ coping style.  I think this is important to realize.

If you are someone dealing with a sick child or who has dealt with a sick child, you should pay attention to yourself and how YOU are feeling as much as you do your child.  It is difficult sometimes, but as the article clearly states, if parents allow themselves to get to the point where they are suffering from insomnia and/or depression, it has a very negative impact on the child.  So, although you may not see taking care of yourself the same way you see taking care of your child, it not only is as important, it IS a way of taking care of your child!

I know that sometimes I would feel guilty about leaving the hospital and returning to the RMH at night instead of sleeping there with M.  But, I am a light sleeper and I would wake up everytime someone came in or left the room, everytime a monitor went off, and everytime M made a noise.  I realized that if I got sick, not only would I not be able to stay overnight, but I would not even be able to visit M, so I made the decision to sacrifice staying there at night to insure that I was able to be there during the day and evening.

I am glad that researchers are starting to look at the way sick children can impact the parents.  Hopefully, insurance will cover treatment and parents will be willing to seek help when there are lasting effects from a child’s illness.  Know your coping style.  Know the signs that you are not coping well.  And be willing to seek help if it becomes apparent that you need it.  If you are a friend or family member of someone who has a sick child, be willing to listen to them, watch for signs they may need help and be supportive of them seeking help if they do need it.

Be well…your children need you!

August 21, 2009

The Bittersweet Reality of Transplants

Posted in Uncategorized at 6:50 pm by bk2nocal

Receiving a transplant is bittersweet in many ways.  First, the fact that one needs a transplant is bad, but the fact that they could actually find an organ compatible is good.  Second, the fact that one now has a functioning organ is good, but the fact that one will have to be on immunosuppressants, with all of their side effects, for the rest of one’s life is bad.  Third, the relief as a parent of a child receiving a transplant is huge, but the constant worry that follows it is also huge.  I am lucky in that I am typically a pretty optimistic person who does not want to worry about things that may not happen until they happen.  But, in this situation, I find myself constantly in a state of underlying worry and stress.  I am happy that M’s rejection level went from a 3 to a 2 in the last two weeks, but I am also worried that the number was not a 1 or 0 as the transplant coordinators seemed to want.  I am also worried that M is now having to have twice as many biopsies as they original had her scheduled to have (she has another in two weeks).  I am also worried everytime I think about all of the side effects of the medicines she is required to take.  I find my stress level going through the roof everytime she has spits up more than a very slight amount (the digestive system is usually one of the first signs of heart failure in infants).  It all weighs heavily on me, even if I don’t regularly “think” about it directly.   I just want her to be well again, and really she is right now.  She is doing great.  But, I don’t want this rejection to get in the way of that.  I can only make sure she gets her medicines that she is supposed to get and hope that they do the job they are designed to do and do not cause her any more health problems. I am so thankful that she has received a new heart that, by all medical tests and appearances, seems to be functioning well.  But, that thankfulness is always tempered by these other worries – hence, the bittersweet reality of transplants.

On a positive note, research is moving forward constantly in the area of transplants.  I am hopeful that some of this research can have a positive impact on M’s life – give her (and me) some relief from her lifelong pursuit of balancing rejection against maintaining her basic health.  On that front, research being done right here at Lucille Packard Children’s Hospital is attempting to identify gene markers for those likely to be able to tolerate transplants without immunosuppressants and those who have a necessity for the immunosuppressants.  For me, the most exciting prospect is this:

“The real value of this technology is the ability to easily and repeatedly monitor patients over long periods of time,” said Sarwal. “We can keep an eye on this genetic signature and watch for changes that might indicate the beginning of rejection before any clinical signs are apparent. This could be a very exciting advance for both patients and physicians as it can lead to the ability to, for the first time, safely customize immunosuppression for an individual patient.”

Right now, the immunosuppressant levels seem like such a guessing game for the doctors that this idea of being able to customize for the individual patient seems huge.  You can read more about this research here.

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