A Second Heart Girl

Senior Year Eve, August 12, 2026

noreply@blogger.com (2ndheartmom) — Thu, 13 Aug 2026 05:01:32 +0000

Well, we officially made it to Senior Year of High School. I know that many, many transplant families are not so lucky. So, while a lot of parents are sad about their child growing old and hitting these milestones, I view every one of them as a bit of a gift and I am so happy that we've made it here with a relatively healthy, incredibly happy and all around great kid!

I haven't written here since before Covid and that was a bit of a rough ride for us. But, we all made it through that time. She was out of school a bit longer than everyone else, but successfully returned and actually didn't end up getting Covid until a year and a half after returning to school. Online school was rough. The adjustment back after almost a full year out (she returned in February 2021) was a little rough as well. But she was so happy to be back it made up for any added anxiety.

Her first couple of years of high school both saw pneumonia in the Spring and substantial amount of time missed at school. This past Spring, she was diagnosed with colitis after two emergency room visits followed by days in the hospital. But, she is doing well on the medicines and was able to pass her two AP exams and finish out school with decent grades despite all the challenges.

Tomorrow, she is driving her new-to-her car to school for the first time! She has painted the windows of her car and her parking spot. She has been doing the Career Technical Education program for Child Development and worked in an after-school program at her elementary school last year. As part of that program, she also has worked in an inclusive preschool and is considering a future in Child Life or Occupational Therapy. But, she also really would love to work in the educational area of Monterey Bay Aquarium. We were lucky enough to do a weekend trip a couple of weeks ago before her most recent heart cath to visit the CSU Monterey Bay campus, the aquarium, and we stayed in San Juan Bautista. It was a great trip to finish out Summer and look toward a possible future. Right now, she plans to stay home and go to Community College next year and then decide if she wants to transfer after the first year, or stay for a second. I'm fine either way!

So, although we've had some ongoing health issues with the recurring pneumonia, concerns about heart pressures that caused her to have to have three caths in the past year instead of staying with the every two year schedule we were put on, and the colitis. But, they've been far outweighed by the great things. She is still involved in Girl Scouts. She babysits a little girl with a seizure disorder that is non-verbal and she loves it. She has great friends with many different interests. She dabbled in doing debate a little last year and is hoping to compete in speech in Community College. She doesn't do 5Ks anymore. After doing cross country in Middle School for one year she decided she was not a runner.

Overall, this update is a joyous one! I am so thankful for her donor family, all the doctors and nurses and echo techs and electrocardiologists and so many more. And if you're reading this after the long hiatus, thanks for checking in! If you're new, please go back and read about Bean's early story!

St. Dorothy's Rest, where Bean has gone to Transplant Camp the past three years!

Fun at Transplant Camp!

We visited Pebble Beach golf course while driving 17-mile Drive this past cath visit!

On the beach, where she belongs!

And, Six Years Later - Marking the Good Times

noreply@blogger.com (2ndheartmom) — Wed, 22 May 2019 05:07:00 +0000

Hello! Long time no write on this blog. I have always included a link to this blog on my email signature to keep people reading Bean's story and hopefully inspiring some awareness about organ donation, but I stopped writing here when things calmed down a bit in Bean's life (and consequently my own). Obviously, this was a bit of a coping mechanism with me early on and I felt like I didn't have much to say if I wasn't writing about medical procedures or milestones or such. But, I've recently realized in being in some online groups for pediatric heart transplants that it is equally (maybe more so) important to mark those "normal" times. Times when we go years without hospital stays (knock on wood). Times when she runs 5Ks with Girls on the Run for multiple years. Times when although she is taking medication twice a day still, it is easily transportable and doesn't change much over time. These are the good times. And they should be marked and remembered. And they should be here for those who are just starting this long and scary process that often left me in a state of doubt.

I don't have any doubts anymore. We absolutely did the right thing. Despite the fact that she has a leaky valve due to a catheter running into her tricuspid valve during one of the biopsies. Despite the fact she has a pacemaker because her heart started some irregular beats a few years ago (perhaps because of that leaky valve). Despite the days, weeks, really months we've spent in a hospital room, she is healthy and happy and absolutely amazing. Like I said, she does 5Ks with Girls on the Run. She does gymnastics and loves it. She is an active Girl Scout and is in 4H. She has tons of friends and no real restrictions. She doesn't even get sick when we get sick nowadays! She is the healthiest immune-compromised person I know (I don't know a ton of them, but she is healthier than a lot of the non-immune-compromised people I know).

I, on the other hand, am a bit of a basketcase. I have realized only recently that I have been in a sort of PTSD fog for the last 10 years. I was in survival mode and although I've made it through and even thrived for some of it, I can't remember much of it and often lack a total awareness of what I'm feeling and experiencing in life. It is a strange feeling, moving through life without really experiencing it fully. I just feel a little lost. Sometimes it isn't as strong as other times, but it is always there. That feeling of not really knowing what is happening or what will happen next. And we've been on a relatively straight road for the past few years, but it is still there. Every time she looks a little pale. Every time we go to the heart clinic for an appointment. Every time something happens that brings a bit of the unknown with it, I am in that slightly panicked but can't bear to feel the panic state. Which makes no sense, but its the only way I can describe it.

So, for those parents out there who are looking at the beginning of this road and wondering where it leads, it leads to amazing things. It is not an easy road. There are constant worries and concerns (recently it has been measles scares since she can't be vaccinated for that), but there are also constant joys and celebrations.

So, I'm back. I'm back to record the good, the mundane (which is good for us in transplant land), and the struggles (because they are still there, just smaller and much more manageable). Hope some of you rejoin me!

"C" is for Catheterization

noreply@blogger.com (2ndheartmom) — Sat, 06 Apr 2013 03:52:00 +0000

I can't believe I've already fallen behind in the A to Z Challenge. I guess that is why it is called a challenge though. So, I will be playing a bit of catch up over the next couple of days.

"C" is for Catheterization - specifically Heart Catheterization. Which is actually what my daughter had on Wednesday, the day this was supposed to be posted. For those unfamiliar, heart transplants are monitored for rejection in a number of different ways, some more invasive than others. Once a year, a heart transplant recipient receives what is called an annual exam, which includes a biopsy testing for cellular rejection, testing of the arteries for any hardening, and testing pressures on both sides of the heart.

With older children and adults, they can use a local anesthetic, but with smaller children who can not really follow instructions or stay still, they use full anesthesia. So, it is a surgery, but the incision is very small - more like a scratch than an incision. I thought I might share our day of the "cath".

This Wednesday, we arrived at the hospital around 7 a.m., went to the Ford Surgery Center to get checked in, all the vitals taken, etc. We were then taken to the pre-op holding area, where Bean was given a pre-op medication to help her relax and forget any trauma that happens in the pre-op time. We then walk down the hall from Lucile Packard to the Stanford Hospital side where the cath labs are located. (In the new hospital that is being built I think LPCH will have their own surgery areas and cath labs, but right now, everything goes down to the Stanford side). I had to dress in some ridiculous looking sterile garb to walk down the hall and into the surgery room with her and then we laid her on the operating table and as they tried to put the anesthesia mask on her she freaked out and started bucking like a wild animal, screaming, and crying. It took three of us to hold her while the anesthesiologist held the mask over her mouth and nose and we waited until it took effect. This is typical and she never talks about it, so I imagine she forgets it afterwards. She talked about me being dressed in the "nursing" clothes after and walking down the hallway, but said nothing of the anesthesia mask. So, that is a a relief to know that she doesn't really remember it at all.

We then go back down the hall to the LPCH waiting room and wait. The typical cath is anywhere from 30 minutes to an hour, but the annuals sometimes take a bit longer. We grabbed some breakfast then sat and watched TV, did some computer work, and chatted with my in-laws who were nice enough to drive up from Bakersfield for the procedure. In about an hour and a half (they don't start immediately because they have to get an IV placed, take some blood for labs, etc. before starting, so this was actually pretty good time) we were told they were done and she was coming back to the PACU (post-op recovery). The doctor came in and told us that everything looked good and she did well and we waited another 15-20 minutes to be called back to the PACU to see her.

Each time in the PACU is different. Sometimes she is still asleep. Often she is crying, but pretty out of it. This time, she was in the middle of the post-op Echocardiogram and she was crying pretty hard and fighting the echo tech with all she had. She was rolling away, trying to grab her arm and move it, kicking her legs. And she was still pretty out of it. The echo doesn't bother her much anymore when she isn't post-op, but the nurse a few times ago told me that some of the kids have a reaction to the anesthesia that makes them really angry and emotional. I think she is one of those kids. Because even when the echo tech finished and left and I was able to hold her and rock her, she was not very comforted. After about a half hour of crying, trying to get her to take a popsicle or water or juice, trying to convince her to keep her leg straight and still so the entry sight would not bleed, and just general misery, we were told we were moving up to the Short Stay. This usually happens only after the annuals because they have to put them under deeper and longer and it takes them longer to be completely recovered from the anesthesia and they want to make sure there is no bleeding at the sights. For other, shorter caths, we're usually able to stay in the PACU and leave after an hour and a half or so recovery. But, for this one, it is a four hour recovery. So, they send us to the Short Stay where there are shared rooms and not a nurse assigned to every bed. She was angry and miserable for about another hour or hour and a half and then she got hungry, so we ordered food for her and she ate and started to feel better. It was a lot of sitting, trying to calm her down, make her comfortable and dealing with our own hunger and exhaustion. We got lunch from a local Jack in the Box, ate in the lobby and by that time, they were releasing her. It was 2:30 p.m. So, we had been there for 7 1/2 hours and we were now going to have to drive back home, which is a 3 1/2 hour drive!

It was an exhausting and long day, but we received nothing but good news and the next day we were given the news that she had a zero in rejection! So, all in all, it is worth it to know that she is doing well and her heart is doing well. But, the catheterizations have become a new level of stress because of the heart valve damage that happened last year. You can read about that and the aftermath of it here. But, all went well, and I'm feeling better about things now. It is good to know that there is no rejection. Even when she seems perfectly healthy, it is sometimes a worry. So, the catheterizations and biopsies are really the only way to get a guarantee that no rejection is happening in there.

B is for Blue and Green Day - April 19

noreply@blogger.com (2ndheartmom) — Wed, 03 Apr 2013 04:19:00 +0000

Today is "B" and I thought I would share some information about the annual "Blue & Green Day," which falls on April 19 this year. On this day, people are encouraged to don their blue and green to bring awareness to organ donation. According to the website, the purpose of the day is to "give HOPE to the more than 117,000 people on the organ transplant waiting list; HONOR organ, eye and tissue donors; REMEMBER those that died waiting for their second chance at life; and CELEBRATE the
patients who received the gift of life through transplantation." So, on April 19, I will be wearing my Donate Life shirt, carrying my Donate Life bag! I will be honoring not only Bean's donor but all those donors and their amazing families. I will be celebrating Bean's transplant and the life she received. And, I will do my best to remember all those who are not able to receive their needed organs while also holding out hope for all those still waiting.

If you have not already registered as an organ donor, please do so here! There is no greater gift than this - I speak from experience. And I hope you will consider donning some blue and green on April 19 and sharing my story if you don't have your own to share!

Blogging A to Z in April - A is for April Being Donate Life Month

noreply@blogger.com (2ndheartmom) — Tue, 02 Apr 2013 04:02:00 +0000

Well, it has been a while since I blogged here at A Second Heart! Bean has been doing well (check her out in that picture in the blog header - taken this past week) and I guess I didn't know how to reenter blogging here while lacking the exigence of her illness. But, I've decided that the Blogging from A to Z and Donate Life Month are the perfect means for making the comeback to posting. And I realize that I don't need to have it be medically related every time I post, although I have chosen Organ Donation and Transplant for the theme of my A to Z month, so it will continue to be somewhat medically related at least for a little while.

According to their website, the Blogging A to Z Challenge is:

Using this premise, you would start beginning April First with a topic themed on something with the letterA, then on April second another topic with the letter B as the theme, and so on until you finish on April thirtieth with the theme based on the letter Z. It doesn't even have to be a word--it can be a proper noun, the letter used as a symbol, or the letter itself. The theme of the day is the letter scheduled for that day.

So, I am starting today with A. I thought of using Allomap or Anti-rejection Medication (that may still come up under "I" for immune-suppression), but then I saw that April is Donate Life Month and so I decided that was the perfect first post for this theme!

Donate Life Month is an effort to increase registered donors so the 115,000 men, women and children awaiting organs will have a better chance of finding a match. There is even a Presidential Proclamation for the month! So, in honor of that and in the hopes to give back a little for the miracle we have received for my daughter, I will be blogging about Organ Donation and Transplant this April!

Looking ahead, I will be telling you about Blue and Green Day (April 19), Cardiac Catheterization (on the day that Bean is receiving her first one since that fateful day last year when they bumped her valve during one), Donors and their families, and that will be just the beginning of this week! I look forward to catching up with those of you who have been wondering how we are doing, spreading the word about organ donation and providing some information about transplant and the aftercare involved with it. I hope you will join me this month!

A little lighter...A little quieter!

noreply@blogger.com (2ndheartmom) — Mon, 20 Aug 2012 07:07:00 +0000

Bean is a little lighter and a LOT quieter sleeper now that her tonsils and adenoids are out. She did pretty good over all. That picture to the left is her pre-surgery after they had given her some Verced. She gets mighty happy when the Verced kicks in!

The surgery went smoothly and we thought we were going to have the predicted 24 hour monitoring and release, but no such luck. Her oxygen saturation was really poor post surgery even with receiving oxygen through a nasal cannula. So, the first night they had to put an oxygen mask on her,which really ticked her off. She woke up screaming and grabbing at the mask every 15-20 minutes throughout the night. And the next day, she looked like this (with her new hammerhead shark puppet from Aunt Dawn):

During the day, she had to keep oxygen going through the cannula at a pretty high rate, but she didn't have to wear the mask, which was good. She gradually started coughing more and clearing out some of what was in her lungs, but it was obvious we weren't getting out of the hospital in 24 hours! She stayed on the cannula until this morning (surgery was Friday morning - so almost a full 48 hours of oxygen support was needed) and although she is still dipping down into the high 80s for oxygen while sleeping, she usually recovers back up into the 90s quickly and the ENT doctor said it was probably still much better than she was before, so he wasn't too worried about it. So, we are still here in the hospital for one more night for observation now that she doesn't have oxygen support - so far she has dipped into the 80s a few times, but has almost immediately recovered into the 90s (sometimes it takes a cough or two) each time. So, we should be out early tomorrow morning (early in hospital time, as it seems like discharge always takes hours to complete) and back home in Chico tomorrow with a much quieter sleeper!

I am also hoping that her growth takes a jump now that she isn't having to work so hard every night in her sleep. We shall see if that part actually comes to fruition.

Because of the heart valve issue (which seems to be working "beautifully" according to the transplant team last Wednesday), she will have her annual biopsy late (usually it takes place right around the heart birthday, but they are moving it out to March or April to give her a break after the heart valve surgery and this surgery) and then we will move to a once a year schedule to try to avoid any more accidental bumps - the less biopsies, the less chances for bumps. I'm happy about that. Even though she has had some issues with low-level rejection, her prograf numbers have been pretty predictive of the issues (good numbers = good biopsy results; bad numbers = worse biopsy results), so I think as long as we are on top of her prograf numbers, we should be okay. It was a little low a few weeks ago, so we had it rechecked last week after an increased dosage and the numbers were back up in goal range and they did a draw yesterday here at the hospital and it was on the high side of goal range. So, that is looking good.

Overall, I'm really going to be focused on getting her on a better sleeping schedule now that her sleep should be better. And in the interest of that, I will be trying to build a better schedule around the sleeping as well. She's very good at remembering things, so I think if we had a basic outline of a day for her, she would remember it well from day-to-day and probably be happy to follow along. Now, if only we can do the same!

Hope everyone reading this is doing well! Thanks for following our story!

Tonsils and Adenoids are Coming Out...

noreply@blogger.com (2ndheartmom) — Thu, 16 Aug 2012 18:00:00 +0000

I am hoping that tomorrow's surgery will be Bean's last surgery for a long, long time and I hope that it makes her feel like she looks in this picture. Tomorrow, we are scheduled to have her tonsils and adenoids removed because of her severe sleep apnea. For those of you who have followed her story, you know that we were at the pre-op appointment for this very surgery when they discovered her tricuspid valve leakage and resulting fluid in her chest cavity, which started us down the road to the open heart surgery that she had in May. She has now recovered from that surgery and yesterday she got a good report at her clinic visit and we are ready to move on the tonsillectomy. I was shocked that they were able to get it scheduled only two days later, but happy to have the chance to get it done before my Fall semester begins and mine and my husband's work and travel kicks in to full gear! It sometimes seems cruel to put her through yet another surgery, but there are so many reasons to get it done that I just have to go ahead and do it.

For those unfamiliar with sleep apnea in children, here are some symptoms (I have identified the symptoms that Bean suffers by bolding them):

Snoring
Long pauses in breathing
Much tossing and turning in bed
Chronic mouth breathing
Night sweats

These symptoms can lead to some pretty big impacts, especially if it is let go for the long term. Some of which we already see in Bean (again, I used bold to indicate the symptoms we have seen):

ADHD
Failure to thrive or lower growth rates
Sleep walking
Bed-wetting
Hormonal and metabolic problems

So, we're hoping that getting the surgery now will stop any further cognitive impacts that may lead to ADHD in the future (and she may be a little hyperactive now, but its difficult to tell with a 3 year old). We're also hoping it may get her growing faster and maybe even eating better. Sleeping better will be a boon for all of us. I am not looking forward to another surgery, but I am looking forward to improving her health!

The surgery is relatively easy and short (compared to open heart surgery, most are). But, because of her health history, we will have to stay overnight in the Pediatric Intensive Care Unit. I am hoping that all goes smoothly and it really is just a 24 hour stay.

The summer has been pretty good since she recovered from the surgery (I would say she started feeling "herself" around the end of June, beginning of July - it was a long recovery - more mental than physical I think). She has gone to Monterey Bay Aquarium twice, went on a week long "camping" vacation in Chester, CA near Lake Almanor (we stayed in a cabin), and spent a lot of time at my parent's house, where she gets treated like a princess. But, she is also looking forward to going back to "playschool" and seeing all her friends there! Sorry I have been so bad about updating the blog. I always say I want to make it a priority, but it always falls down the list. Again, I will try to keep it updated more often!

Here are some pics from our summer adventures!

Playing in Chico's downtown fountains

Swinging at the park by Grandma and Grandpa's

Juniper Lake in Lassen National Park

Mom and Bean's feet

Bean's feet

Being a princess at Grandma and Grandpa's - literally!

Enjoying some fireworks on the 4th of July, with Daddy!

Spending some time with her favorite Uncle - Jeremy!

Enjoying the pool at Uncle Jeremy and Aunt Sydney's new house!

Warming up after the pool!

Under a turkey at Bravo Farms coming back home from Papa and Gigi's

Swimmin' with Aunt Dawn at the hotel at Monterey Bay Aquarium

Looking at a tiny, tiny starfish with Grandma at Monterey Bay Aquarium

Exhausted...

Playing in the sand at the park

Back to the downtown fountains...

Legos and Star Wars at Barnes and Noble...future Nerd Girl in action

Playing near the giant slip n slide at Chico's Family Night Out

On the slide at the park

Summer runnin' at the park

Spooning with Nosey

Tiny pool, big goggles! A little swimming in the front yard.

Swimming with dino!

Tap dancing in a pincess dress.

On the boat in Lake Almanor with Gigi

Serious boating

And another summer comes to an end...

Long Needed Update (may be long)...

noreply@blogger.com (2ndheartmom) — Mon, 18 Jun 2012 01:12:00 +0000

I have started to post many times, but I got overwhelmed with all the information that I felt like I needed to share and stopped. So, I'm going to try to make it through this post, even if it requires me to leave out some details. If you have any questions, please feel free to email me or comment on the blog post and I will try to get back to you.

So, let me try to start where details are necessary and move from there. On March 28, I talked about her having the tonsillectomy scheduled, but as I discussed on March 27, the biopsy had a little snag and she ended up with an injured tricuspid valve. Well, between the time of the biopsy and the time of the tonsillectomy, she had some health issues. I got a case of the flu and I kind of thought she had caught it from me. She didn't really run a fever much, but she was worn out, throwing up, seemed to be dragging. But, she is three and can't explain how she is feeling much and she was still up and around like a toddler for the most part, so we didn't think much of it. BUT...when we went in for the pre-surgery (tonsillectomy) check-up with the cardiology team, they did an echo and found that she had a significant amount of fluid around her lungs. Not in her lungs, but around her lungs - its called a pleural effusion and they admitted her immediately. She had to have a chest tube placed, she was put on lasix (a diuretic) to keep fluid from building up again and we were in the hospital for five days. At that point, they spoke to me about the possibility of having to do surgery to repair the valve, but they weren't sure and when we got released they were going to "shop it around" to see what surgeons had to say about possible success, the likelihood of being able to do biopsies after the repair without ruining the repair, etc. So, we went home without a tonsillectomy and on another medication (she was going home on Lasix). The next week was frustrating for me because they wanted us to "watch for fluid build up" and I was worried we were going to miss it and constantly looking for signs of problems, etc. feeling like I should have noticed before we went for the pre-surgery check the first time. But, the Lasix seemed to work and she seemingly was doing well.

We went on like that for a few weeks, and then we got a call in early May that the surgeons had decided the surgery should be done. I was deflated to say the least. Another open heart surgery...this time on a toddler instead of an infant. Needless to say, I was not looking forward to it. We were lucky enough to have the surgery scheduled for after both Jason (husband) and I were off work for the summer, but we were less than thrilled. So, in late May, we decided to do something fun before the surgery and we went with my sister to Monterey Bay Aquarium for a couple of days prior to the scheduled surgery. It was a great trip, but the impending doom hung in the air...at least for me.

We got back just in time for the pre-op appointment, which was less than pleasant. Bean threw a HUGE fit about the EKG and I think she could probably feel my anxiety, which made it all worse. I felt like I was putting her through torture and had a bit of a breakdown. Luckily, my in-laws came into town for the event and were there for moral support. The doctor who came in to speak with us about the surgery was less than optimistic about the surgery. He said that she may need a valve replacement instead of a valve repair, which would mean getting replacements every 3-5 years. Sigh...We somehow got through the day, found a hotel room in the area so we could be at the hospital bright and early the next day and tried to settle down for the evening.

The next morning was actually much better than the pre-op day. The lead surgeon seemed to be more optimistic than the assistant who spoke to us the day before and was pretty resolved that he would not do a valve replacement unless it was absolutely necessary. So, we handed her off to the surgical nursing team and went to wait...and wait...we got a visit from the nurse liaison about four hours after handing her off that she had successfully been placed on bypass (it takes a while to get in when they have previous surgery scars to deal with and from the looks of it, they had some issues getting enough access for IVs, IJ lines and an arterial lines) and they had started the actual repair. It was another couple of hours before the surgeon came in and said they were closing her up. He said the surgery had taken longer because they had tried a number of repairs that did not work before they finally were able to get the "last chance" one to work. This repair was not optimal, and post-surgery he was afraid it may have tightened up the valve too much, making it "stenotic" and told us they would have to watch pressures for a couple of days to see if it would require them going back in to change it with a Glenn surgery. All I could think was that they may have to do another open heart surgery in a couple of days?!?! How is that even possible?!?! But, I nodded my head as if I understood and listened to the rest of what he had to say. A while later, we were called up to the CVICU to see her It was hard to see her on the vent again, but she was able to weaned off of it in about 24 hours and this is what she looked like after that:

Luckily, the pressures were fine and actually reversed direction within a couple of days, meaning that her valve is continuing to leak. Not as bad as before (before it was measuring Moderate to Severe and was well on the Severe end of things - now it is measuring in the Mild to Moderate and is on the Moderate end of things), but still there. Her recovery in the hospital went relatively smoothly. One of the nurses in the CVICU (where they are one-on-one with nurses most of the time) noticed her coughing after she drank liquids and suggested we get a swallow study done. So, that was performed and we discovered that she, in fact, does have a problem with swallowing liquids. She aspirated extremely badly in the swallow study. We have always noticed her coughing after drinking, but I just thought she was in a rush...but, turns out, she has a swallowing issue. So, we now have to thicken her liquids other than Pediasure (which she still drinks with a bottle nipple so flow is controlled). It has made a huge difference, and I must admit that I felt terrible when I found out that we had basically been waterboarding her with every glass of water or juice we had given her in the last two years. :( But, at least it was caught (thank goodness for an aware nurse willing to ask for the swallow study) and we can fix the problem now.

We were in the hospital for eight days, which was actually not bad at all. Since we've been home, Bean has really yet to become herself. She is moody, often angry (which is not like her at all), not eating well, and often complains of pain and "being sick". She has not been running a fever or vomiting, so I don't think anything is seriously wrong, but I do believe she has a lot of pain from coughing (she came home with some "junk" still in her lungs and she has been coughing ever since trying to get rid of it). But, she is also a bit manipulative. She uses the pain and feeling sick as an excuse to not do things she does not want to do or to try to guilt us into doing what she wants done. Its an easy sell. She's been through a lot. Her bruises and incisions still are healing. And I'm exhausted most of the time, so its easy to give in rather than fight the battles.

But, today, I have initiated a bit of a battle. I told her that from now on if she complains of feeling sick, I will make her lay down. And that we are back on our schedule for bottles, meaning she gets Pediasure at 10 a.m., 2 p.m. and 8 p.m. and must eat and/or drink water or juice in between. This morning I told her if she did not eat because she didn't "feel good" than she could not go out and play in the sprinklers or drink a bottle or have a bottle because if she was too sick to eat, she needed to just lay down and rest. I mostly did this because I figured it would snap her out of her not "feeling good" if she really felt okay and a little bit because I think she really does need to lay down and rest more often as she totally goes until she is completely worn out which adds to the moodiness. And, you know what? It worked. She ate a great lunch of BBQ chicken, broccoli and a bread stick today! First real meal she has had since the surgery.

So, after a long post, the short of it is that we are on the mend. The summer has started off a little rough, but I am looking forward to making up for that with lots of activities and fun stuff as we find our new normal once again!

Thanks to everyone out there who kept us in their thoughts and prayers during this time. I'm so glad its over and I'm glad she is doing better. Fingers crossed the repair holds for a long, long time and we can go many, many more years without another open heart surgery!

H is for Heart Transplant: What a different three years can make...

noreply@blogger.com (2ndheartmom) — Tue, 10 Apr 2012 04:00:00 +0000

This was Bean three years ago this month. Its tough to look at that picture. At that point, Easter 2009, we were still in the hospital in Sacramento and they weren't quite sure what was going on - just that her heart was five times the size it should be and she was not responding well to the IV meds they had her put her on. We spent that Easter in that hospital room. I still have a coffee cup and stuffed bunny they brought around for all the parents and kids in the ICU. That week was probably one of the hardest of my life. Everything was so unclear and it just didn't seem like anyone could tell us exactly what to expect.

This was Bean yesterday - Easter 2012. What a difference three years and a heart transplant makes! Bean got her new heart about three months after the above picture was taken. We are forever thankful for the family that saw past their own grief to donate their babies heart to our baby. We have not heard back from the donor family and we may never hear back from them, but hopefully they took some solace in knowing that they saved a life...perhaps many lives (if the other organs found homes in other babies).

But, I thought some of you might be interested in our learning more about heart transplants. So, that is the subject of the rest of this post.

A heart transplant is an open heart surgery where a diseased heart is removed and a healthy heart from a donor is sewn into place. Heart transplantation is only about 50 years old, with the first one being performed in 1967. The process has come a long way since then, and according to Wikipedia about 3500 heart transplants are performed annually worldwide in 2007. Infant heart transplants are more rare and more recent. According to the Loma Linda University website, where the first infant transplant was performed, the first infant heart transplant of a human heart was in 1985. According to Medscape Reference 350-400 pediatric heart transplants (in children 18 or younger) are performed annually, so only about 10% of the total heart transplants done each year are in children under 18, let alone infants. Because of the relative recency of heart transplantation in infants, the statistics on survival, complications, etc. is limited. But, the survival rates for younger recipients seem to be better than older recipients, which maybe a reflection of their ability to adjust their immune response system better.

Bean received her heart at Lucille Packard Children's Hospital and according to their heart transplant page they lead the nation in survival rates for one- and five-year outcomes and they have the largest group of child recipients who have survived longer than 25 years with a heart transplant! Pretty good statistics.

Bean is currently on a drug regimen that requires us to administer a number of medications every morning and every evening. She started out post-transplant on about 13 medications, but has been weaned off of all but five of them! She will probably be on these five for the rest of her life. She takes two immuno-suppressants, one blood pressure medicine, one anti-statin (lipitor) and fluoride because our water does not have fluoride in it. All of them other than fluoride are liquid and are taken with a syringe - we draw up a measured amount and she takes it in her mouth. The fluoride is a chewable. She will, at some point, be able to switch over to pills, but for now, it is liquid and she has adjusted to taking them just fine. Other than that, we have to get blood draws done to check her immuno-suppressant levels every once in a while. We have to drive about 4 hours to get to Stanford for clinic appointments and biopsies to check for rejection about every three to six weeks. Overall, her life is not that much different than any other three year old. But, she is at risk of getting sick easier and staying sick longer, she obviously has ongoing medical appointments that others would not have to deal with and she suffers from some side effects of her medicine like diarrhea and stomach issues.

Overall, I can not think of a better outcome than we've had, considering how very sick she was as a baby. I am so thankful that heart transplants have become as successful as they have for infant recipients and I'm thankful she was able to get a heart when she most needed one. And we will continue to do our best to be one of the positive statistical results of heart transplantation!

G is for Gorgeous Day! (and Gigantic bubbles)

noreply@blogger.com (2ndheartmom) — Sun, 08 Apr 2012 05:23:00 +0000

Today is an Instagram day. I've just discovered it and I am absolutely loving it. It was a beautiful day in our hometown today. The sun was out, but it wasn't too hot. It wasn't too windy. And we enjoyed some outdoor fun. This morning we went for a walk and found that someone's sprinkler system was malfunctioning and had created the best puddle. So, we came home, donned the rain boots and went back for some splashing. Even Bella, our dog, got in on the fun!

Later in the afternoon/evening, we got out one of Gigi and Papa's Easter gifts - a giant bubble making wand! It worked really, really well and we all had a lot of fun making gigantic bubbles in our front yard. It took Bean a few tries, but she finally got the technique (lay the wand completely flat and then pick it up very slowly) and she got some HUGE bubbles on her own:

This evening, we decorated some eggs. I used the idea from Wildink Press to bake the eggs in the oven rather than boil them and it was so easy! I mixed up some vinegar, water and food coloring and then we decorated them with colored markers and glitter glue pens. They aren't exactly museum-quality pieces, but Bean had a blast!

That's it for this gorgeous day! We enjoyed all parts of it and are looking forward to fun visit to Grandma and Grandpa's house tomorrow and maybe even a visit from the Easter Bunny tonight (although the basket has yet to be built...better be getting on that soon...its getting late!).

Wishing you all a very Happy Easter and a great week ahead!

"Egg"cellent Easter Egg Hunt and Family Fun

noreply@blogger.com (2ndheartmom) — Sat, 07 Apr 2012 06:56:00 +0000

Well, I've missed a few letters/days in the A to Z adventure, so I'm just jumping right in with "E" (yesterday's letter) and "F" (today's letter). Not exactly what the monthly meme was designed to do, but I will have to go with it.

My local Chico Mothers Club had an egg hunt this week and we had great fun. This was the first large character that Bean has been willing to actually touch and sit on their lap! Usually she is really excited to see them until she gets up close and then she gets scared. But, she climbed right up for the picture, although as you can probably see from the picture, she was not exactly confident in her decision. She had fun with the Easter Bunny, but really liked the pre-bunny activities - playing in the park:

and of course, the egg hunt (not a challenging one because there were only 4 and younger there, but they had a blast):

The day was particularly special because Bean's "Gigi" and "Papa" were here for a visit! So, we all got some special Family Fun time Easter-style. The day was gorgeous. The river was running fast after all the rain, but the sky was nearly cloudless for the egg hunt:

She spent time with Papa and Daddy...

And some with Gigi...

And some time by herself just enjoying the great outdoors...

All in all, it was a great day, especially after the last few weeks of illnesses, doctor and hospital visits, bad weather and just plain miserableness! We were also able to enjoy the first of our Thursday Night Markets here in Chico. We will celebrate Easter at her other Grandma and Grandpa's on Sunday with her favorite Aunt and hopefully her cousins.

I'm really happy to have had this time as her Dad is leaving again on Wednesday for work and then when he comes back we will be straight into the tonsillectomy/adenoidectomy, which will obviously have some recovery time (and a night in the hospital again) and some anxiety for all of us. But, if it helps her sleeping become more consistent and restful (and possibly even give her a better appetite) and keeps all the ear infections at bay, it will be more than worth all of the hassle! Fingers crossed.

For now, I leave you with the Bean readying herself for her day out...I think the smile says it all!

Hope you have a very Happy Easter or Passover or just a great weekend!

A is for Allomap Molecular Expression Testing

noreply@blogger.com (2ndheartmom) — Mon, 02 Apr 2012 01:17:00 +0000

I have decided to participate in the Blogging from A to Z Challenge and since I have recently realized how much I DON'T know about heart function, heart diagnostics, etc. I have decided to use a theme of heart disease and make it to treatment. I will try not to boring and dry, and hopefully someone reading will find it somewhat helpful.

With our recent problems in the areas of biopsies and the fact that she has only one access point for biopsies (as opposed to four), I've had a lot of people asking me about alternatives to biopsy. One such alternative is the recent AlloMap Molecular Expression Testing - or the blood test for rejection. Bean is not eligible for this alternative - one has to be at least 15 years of age. So, she has a long ways to go. But, I thought for those curious about this, I would share the facts as I know them.

Approved by the FDA in 2008, the test is designed to provide an alternative to invasive endomyocardial biopsy (what Bean gets) for those patients who are stable and asymptomatic. The test only predicts probability of moderate/severe acute cellular rejection. This is only one type of rejection. The others are antibody-mediated rejection (AMR) and cardiac allograft vasculopathy (CAV). The test can be used in conjunction with other clinical assessments (echocardiograms, EKGs and examinations) to judge whether an invasive biopsy is needed (negative numbers would be followed by a biopsy for more exact information).

The preliminary results of clinical comparisons between the AlloMap and biopsies is pretty impressive. Over a four year period, from 2005 to 2009, the test was used on 602 patients in 13 transplant centers and results showed there was no inferior results when compared to biopsy for clinical outcome. Now, all that technical language simply means that those having regular biopsies were no more likely to suffer acute rejection than those receiving the AlloMap instead. Which is good news, but doesn't mean that this test does away with biopsies (because the way a patient is found to be stable and asymptomatic is through routine biopsies following the transplant - all the test subjects were at least six months post-transplant). But, it will save individuals a lot of invasive procedures if they are doing well clinically and have no signs of rejection or other problems with the heart.

I would assume (although I don't know for sure) that there would still be a need for annual biopsies because it is during these that they test the elasticity of the arteries and other issues that are known to cause issues for recipients. But, only having to have biopsies once a year instead of three times a year would be a very welcome change for us right now. But, again, we aren't even in the running for this choice. And I don't know if Bean's history of rejection (two 3s in the first year and a number of 1As post-transplant) would disqualify her as a candidate or not. But, I guess I don't have to worry about that for at least 12 years. I have spoken to a few people who are using this technique. Some of them love it. Some of them feel a little trepidation at trusting the results as much as they would a biopsy's result.

Anything that provides transplant recipients and their doctors more choices in treatment and evaluation seems like a welcome thing to me. So, I hope that AlloMap continues to be successful and improve and maybe even gets approved for younger recipients so kids under 15 do not have to suffer so many of these invasive procedures!

So, that's today's A topic - AlloMap Molecular Expression Testing. The information presented here came from the product's website and/or the wikipedia page for the product.

Blood Draw, Petco, Barnes and Noble and lots and lots of sleep!

noreply@blogger.com (2ndheartmom) — Thu, 29 Mar 2012 00:03:00 +0000

That about sums up our day. The picture over there is actually from a few weeks ago (we are regular Petco shoppers - Bean loves the place), but today was much the same but with a different outfit. The blood draw this morning was a little more traumatic than usual as I think Bean was still upset about the IV "poke" in her hand that is hurting her, so another "poke" was not on her agenda! But, she made it through. I think I've said it before, but the blood draw person here in Chico is magical! She finds Bean's vein the first time everytime and is so fast! Same today...so, Bean was upset, but not upset enough to skip the trip to Petco and Barnes and Noble we had discussed. It is nice that she is so easy to entertain/please! We got some dog treats for Bella, a cat bed for Nosey and a starfish decoration for the fish tank before we departed. We then did our tour over to Barnes and Noble (in the same shopping complex) and visited the train and read a book on Underwater Animals that we ended up purchasing. Overall, a good morning, sans the blood draw.

She has still been pretty grumpy today and the weather is not helping. Its very windy and cold (better than the pouring rain we had yesterday when we got home) and she really loves to be outside. We played for a while outside while I gave Bella (our dog) a much needed bath after her trip through the mud puddles out in the backyard earlier today, but it got too cold and windy after a while. She napped for an hour or so this morning and has been napping this afternoon for a couple of hours. I think the hospital wears her out (just like the rest of us...hospitals are not good places for restful sleep!) and makes her grumpy. But overall, she seems to be doing okay today. No fevers. Her eczema is looking better. And she even seems to be snoring a little less today than she has been the last couple of days. Now, I hope that the elongated nap today does not lead to a late night tonight, but we shall see.

Thanks to everyone out there for their kind words and thoughts and support! I am excited to get some health things out of the way this month (the biopsy was a biggy, the tonsillectomy even bigger!) and I'm so thankful that we were able to escape from the hospital yesterday. I know there are many families out there who do this repeatedly and have much longer stays, so we really are extremely thankful.

Biopsies 2, Bean 0

noreply@blogger.com (2ndheartmom) — Wed, 28 Mar 2012 05:51:00 +0000

Well, our luck with biopsies lately has not been good. Last biopsy (November of last year) Bean was running a 103 degree fever by the time we arrived at my parent's house about an hour and a half away from Lucille Packard. She ended up having pneumonia and we spent four days in the hospital, including Thanksgiving.

This time, we didn't even make it out of the hospital. Bean was scheduled for biopsy at 11:30 a.m., meaning we arrive at 10 a.m. for pre-op. Typically, I try to make sure she is the first case of the day, as every additional case means the possibility of running behind schedule. But, because we found out she was going to have to have a tonsillectomy/adenoidectomy mid-April, I wanted to get the biopsy out of the way ASAP and they had an opening on March 26 for mid-day, so I took it. But, as I expected, they were running behind, so they didn't actually get her into the biopsy until about 1 p.m. We got report on her about 2:30 p.m. that she was doing fine and would be in recovery getting her echo and we would be called back to see her. It seemed to be an unusually long period of time before they called us back, but when we arrived, she was just finishing the echo and was NOT in a good mood. Because her recent sleep study showed extremely bad apnea ("worst case I've seen" says the ENT...when Bean does something wrong health-wise, she really does it well...), the anesthesia is becoming a bigger concern, so they had to give her some additional breathing support and that required another form of anesthesia that makes them a little more cranky upon waking. She finally wore herself out and calmed down to have some Popsicle and apple juice.

When Nancy (transplant team NP) came to tell us about the echo, she started out with "Well, the good news is..." and I immediately knew something was wrong. Usually they just say "everything looks good." So, she told us all the function looked good, no effusion, but during the biopsy there was some damage done to a "hinge" that controls the tricuspid valve (which they go through with the cath) and now the "hinge" is not closing that valve 100% properly. So, there is now some "leakage" in her valve. At present, it did not show any functional changes in the flow, so it seems to not be anything serious, but it is obviously not something they want to happen. And although the echo looked good, Bean's heart rate was seriously elevated and staying put at about 40 beats per minute above her norm (technical term = tachycardic). So, the concerned looks came out, an EKG was ordered and Nancy told us she would show the head of the transplant team the EKG and talk to him about the situation. At that point, I think both Jason and I were pretty much figuring out we would be staying. The EKG had "significantly changed" from prior EKGs of hers, which is a concern I guess (in all honesty, for a mom of a heart transplant recipient, I really don't know a whole lot about the heart and all its parts and functions - but, I think I'm being convinced that I should learn it). So, she was admitted for an overnight observation. Sigh...

Her heart rate slowed down just about the time she got to the floor (hospital room), but it was still a little bit high. And on doing vitals when she was admitted, her temperature was a little high. So, I was afraid something else was going on other than the high heart rate, but Tylenol did the trick on her temp and she was okay overnight. They reran an EKG when we got to the floor and did another one this morning and all three show the same difference. She now has some kind of wave change (again, this is something that I am not that familiar with, but will have to ask more questions about at the next clinic appointment) and that could mean an injury (the one to the valve maybe?) or "bruising" - but, I don't know for sure. They did not seem that concerned about it, but we do have a follow-up in two weeks with the clinic, so it could be something that will require monitoring for a while. I'm not totally sure. I do know her heart rate went down, her temp has been fine, and they released her today about Noon. We are back home and although she has been in a really bad mood tonight (mostly due to her hand that they put the IV in being bruised and it seems to really be hurting her...oh, and she has developed a wicked case of eczema...yes, another health problem...on the palms of her hands, of all places, and they are itching like crazy), but other than that, she seems to be doing fine.

So, things with this biopsy did not go so well. But, hopefully over the course of the next few weeks, she will be able to breathe better at night (oh, her apnea score was 43, which I guess is something like 20 incidents higher than the highest that most of the people working with her, including the ENT, has seen) with the tonsillectomy/adenoidectomy (she was just coughing due to that problem as I typed this). We can figure out what exactly is going on with this valve/EKG/heart rate issue we had yesterday (I need to write down a list of questions to take to clinic with me this next time). And we can get her prograf levels right. I have to take her in for a blood test tomorrow (great way to wake up the morning after being released from the hospital, eh?) because the biopsy ran so late that the trough level was probably not accurate, but it was pretty low for her. So, hopefully tomorrow will show it where it should be.

All this, and we didn't even get a zero on the biopsy result! :( I had really thought we were going to have a few in row, but we are quickly back to the 1A. Oh well, they keep telling us its really the same as a zero (than why not call it a zero?), so I guess we should be happy.

Other than that, these past two months have been the weeks of ear infection (a side effect of enlarged tonsils and adenoids), 10 days of antibiotics, a few days off and then another ear infection. And she finished her last bout of antibiotics about six days ago, and I'm pretty sure she has another ear infection (her eyes seem to get goopy when she has them). So, we will surely be in the pediatrician's office in the next few days as well. Sigh...I could really use a couple of weeks without doctors, blood draws, biopsies, etc. But, it certainly isn't going to happen for us anytime this month! Right now, we're looking at blood draw tomorrow, follow-up clinic on April 11 and tonsillectomy/adenoidectomy on April 17. And I'm sure there will be some pedes visits mixed in. In addition, I really need to get her into a dentist soon. She will now need to take antibiotics (because of the valve situation) before having any dental work done, so that is an added layer to the mix. I, personally, detest the dentist. So, this has not been something I have been very good about doing. And with her medication and still drinking Pediasure so many times a day, its something I really need to make happen and soon. Her first visit was without trial - no cavities, no issues. But, its been longer than it should be since that one, so I'm afraid of bad news. I could really do without bad news. And she could really do without having dental work...but, I should get her in sooner rather than later as putting it off only makes it worse in the end (something I've learned from personal experience).

So, that, in a nutshell, was my last couple of days! I hope all of you out there had better.

A Long Time Coming Update and a Little RxArt

noreply@blogger.com (2ndheartmom) — Thu, 15 Mar 2012 20:31:00 +0000

I know I haven't posted here in a while. Its been a...well, it seems like its been a couple of years of struggling to get a grip on things, getting a grip and then quickly losing that hold and having to struggle to get a grip all over again! So, sometimes I feel the desire to post something here, but I quickly lose out on the "current event" status of the post and then it feels silly to post it. Overall, since we left the hospital for Bean's pneumonia in November of last year, things have been up and down, but all around okay...and very, very busy.

When she got out of the hospital, Bean did fantastic. It was as if she was breathing through another person's nose and/or mouth! She didn't snore. She didn't gasp for air while sleeping. It was amazingly peaceful sleep. But, as time went by, she was back to her snoring self. Soon, it was as bad as before and she had a runny nose and started to cough. We had to cancel a sleep study because of the illness. She was diagnosed with Strep Throat, although she wasn't tested for it because it just seemed extraneous - the pediatrician put her on antibiotics. She was on those for 10 days, got better, then about four days later, she started to complain about her ear and she was back to a runny nose. So, we went in and she had an ear infection and some upper respiratory stuff going on. So, back on antibiotics we went (a different one this time). She was on that one for 10 days and seemed to be doing better again, although still a little stuffed up. We were off antibiotics for a few days, the stuffiness continued and a slight cough and then she woke up from a nap with goop in her eye. The next morning her eye was pretty much crusted shut. Back to the pediatrician we went. This time, she had one ear "full of puss" and signs of a possible sinus infection. The eye thing was probably from her ears and sinuses being so full they didn't have anywhere else to drain but out her eye. Ick...so, on to the third antibiotic. That was last week and things just didn't seem to be improving greatly over the weekend. She would feel good and then crash. She would cry at night (I assume from her ear) at random times, over and over. So, we went back to the pediatrician this week and found that she had infections in both ears - the right one looked like "it had not been treated at all". So, we changed back to the original antibiotic she was on for the ear infection and started her on allergy medicine to see if maybe this is all related to allergies. Sigh...

Tonight, we have our sleep study. Even though she isn't 100% healthy at this point, I don't want to put it off any longer and I feel like her sleeping/snoring/apnea stuff is pretty representative right now of what it has been other than that couple of weeks after she got out of the hospital in November. So, we'll be going to Mountain View tonight for that. Wish me luck!

The impetus for writing this update came in the form of a post about RxArt - a non-profit that "promotes healing through exposure to fine art" and has done some amazing projects at different hospitals around the nation. As someone who has and will continue to spend a lot of time in a hospital setting (even if just for visits), I so appreciate the art that is made available in these settings. Lucille Packard has some great pieces in their collection and I'm always excited to see anything new that comes along. Recently, they changed out the art in the pre-op waiting room and made it all sea creature paintings. This was an obvious boost to Bean's spirits when we went! Anyways - I encourage you to check out the link and explore all the different projects and if so inclined, donate some money to the cause! The picture at the beginning of this post is from their latest CT Scanner project at a Children's Hospital in Illinois. We have not been through a CT Scan experience, but I hear they can be pretty scary. So, these happy monkeys could really make a difference for some kid!

RxArt | Promotes healing through exposure to original fine art

I am hoping that I will be able to be more regular about updates on here...wish me luck at getting...and keeping a grip. For at least a little while! Hope everyone out there in the land of the internets is doing well!

Not So Wordless Wednesday - Day of Doctors

noreply@blogger.com (2ndheartmom) — Thu, 19 Jan 2012 07:08:00 +0000

Today was a long day of doctors and nurses at Lucile Packard Children's Hospital for us. We started the day by getting up at 5:45 a.m., leaving my parent's house at 6:15 a.m., arriving at the heart clinic at 7:40 a.m....and then we waited a few minutes:

Bean was still in her jammies and she actually did much better today than her last few appointments. She hardly cried at all upon arrival to the hospital (a few whines of "no hospital...no hospital" was about it) and she let herself be weighed (26.4 lbs.) and measured (34.5 in.) and pulse oxed and blood pressured with minimal complaint! She was even good for the echo and although she did not want the nurse or doctor to "listen to heart," she offered up her ears happily for a viewing and finally allowed them to look in her mouth (for a very short time) and use the stethoscope to listen to her heart and lungs. I was very happy with how things went for the heart clinic appointment. Everything looked good other than her prograf level being a little low, so we've gone up on the dosage and we'll check it again in a week or so. But, all her numbers looked good.

We had a three and a half hour wait between the heart clinic appointment and the ENT appointment, so we went to breakfast at one of our favorite spots - Hobee's. It was so good. They brought Bean a little fruit "face" to start the meal (I should have taken a picture, but didn't think of it), with banana and grape eyes, a strawberry nose, whipped cream cheeks and a cantelope mouth. Bean ate it happily and had some toast as well. Both Jason and I enjoyed their famous Blueberry Coffee Cake with our breakfasts and left happily full. We walked around the shopping area once and then got back in the car to see if Bean would go to sleep. Unfortunately, she was pretty wide awake and really wanted to go to a park. I remembered a park we had visited a couple of times with Bella when she was in the hospital and we headed over there. We ended up playing there for about 40 minutes and it truly made Bean's day. She learned how to climb...and climb she did:

She had to work hard at it because her legs are really far too short to function well on most playground climbing equipment, but she followed instructions, kept trying when things went wrong and she made it to the top a couple of times! She is not scared of much, but is relatively safe-minded in that she stops when out of her league and will take help when she really needs it. But, when Jason tried to help her before she really needed it, she responded, "No Daddy. I strong enough to do it." It was very cute. When we left there, we still had about an hour to kill, so we went across to the mall, got some Starbucks and walked around there for about 30 minutes. After that we headed over to ENT.

The ENT appointment was pretty easy. They think her tonsils look fine, but with her snoring, mouth breathing and the anesthesiologist saying she had large adenoids, they think it warrants a sleep study. So, we will have to go over for an overnight stay, with Bean hooked up to a bunch of monitors for the night. I'm not sure how that will go, but we shall see. They will monitor all of her activity - breathing, brain activity, and a bunch of other stuff while she sleeps and then decide if there is enough of an issue to warrant taking out her adenoids or if we can wait it out a bit longer. She is breathing so much better at night now than she was 6-8 weeks ago that I feel a little ridiculous now, but she does still snore every once in a while and she is definitely a big mouth breather right now.

Bean slept all the way to my parents' house! She was exhausted. But, I am so happy with her behavior. I am hoping that we have passed the point where she cries and cries when going to the doctor!

Wordless Wednesday - Bean, Bat Ray, Bella and DaDa

noreply@blogger.com (2ndheartmom) — Thu, 12 Jan 2012 06:42:00 +0000

I have neglected all of you lately, I know. But, I have a new blog that is not Bean-related over at Make It a Girl's World if you would like to check it out. I will continue to post Bean-related information here though and today, I am participating in the Wordless Wednesday meme. Enjoy!

Meet Me On Monday

noreply@blogger.com (2ndheartmom) — Tue, 13 Dec 2011 07:48:00 +0000

I spend most of the blog posts on here talking about Bean. But, I decided to join in a little blog hop meme - "Meet Me on Monday," and write about myself instead. I don't know if I will participate every Monday, but I have seen it a few times and thought the questions were kind of fun. So, here goes:

1. Tomorrow I'm going to _____________________.

Give my second final, among other things. I have office hours at 5 p.m., but I need to get some grocery shopping done. I would like to make some cookies. Bean has therapy...one of her last sessions, which I'm very sad about. I also need to do some more cleaning around the house - the place has been a disaster pretty much since we brought our Christmas tree home and displaced a whole bunch of stuff for which I still have not found places. I also have found some really cute Christmas crafts to do with Bean, but that may have to wait for later in the week...

2. Pudding or Jello? Definitely jello. I like pudding okay, but jello is just better!

3. What book are you currently reading? I'm actually reading two. The first was a book club book from about six months ago that I finally started and really like so far. It's called "Angry Housewives Eating Bon-Bons" and the title does not do it justice. It is about a book club in the early 60s and the lives of the women are fascinating and I love the book choices within the book. The other I just started and is called "The Plato Papers" and is very strange but intriguing. Somewhat post-apocalypse, somewhat philosophical, and sometimes kind of funny. Hopefully I will finish them both before the year ends! My book total for 2011 was pretty disappointing. I would really like to read and finish more books!

4. What is the first concert you went to see? My dear sister (Aunt Dawn from a previous post) took me to see Bruce Springsteen on his Born in the USA tour. I must have been a sophomore or junior in high school. Our seats were far, far away, but I still thought it was awesome.

5. What is your current weather? To me, its cold, cold, cold. But someone told me today that they were visiting family in New Mexico last year and it was 26 below zero! What? Its in the 30s at night here and gets into the low 50s at points during most days. But, I lived in California my whole life, so I think its cold! So far, not much rain though - which is a little unusual.

So, there you have it! If you would like to participate in the blog hop, you can go to Never Growing Old's blog and get the link up information!

Thankful Thursday: 3 West, Lucile Packard Children's Hospital

noreply@blogger.com (2ndheartmom) — Wed, 23 Nov 2011 17:49:00 +0000

We're back. We have been lucky enough to stay out of the hospital since January of 2010, which for a young heart transplant recipient, seems to be a minor miracle. But, our hiatus is over and we are back on "3 West" - or as those in the PICU and CVICU know it, the "step down" unit. We are in the room next to the room we were in when Bean came here post-transplant, and I had to catch myself from walking to that door instead of our current room the first night. Because although it seems like a long time since our last visit, it also seems like it was just yesterday. Some of you may already know why we're back here because you are facebook friends of mine, but for those of you who aren't, let me give you a quick fill-in:

Bean had her regularly scheduled biopsy Tuesday morning to check for rejection. Everything seemed to go very well and we were discharged around 12:15 p.m. and headed out to the airport to pick up my husband, who was flying in from a business trip in Chicago. By the time we had done that and been on the road for about 45 minutes, she threw up all over the back seat of the car. We stopped quickly at the next exit (again, my sister Dawn took one for the team - it was her car and she had gotten up at 4:30 a.m. to help me out by driving and going to the biopsy with me...what a thanks that is we gave her...) and cleaned it all up and changed Bean's clothes and were back on the road. We got to my parent's house about 25 minutes later and gave Bean some water and tried to calm her down. I noticed then that she felt quite warm, so we took her temp and it was right around 101.5! The discharge sheet for biopsies say to call them if they develop a fever over 101, so we called. After a few calls between the heart center, the surgeon and the transplant team, we were told to head back in for overnight observation. She threw up twice more before arriving at the hospital. Since then, we have found out she has pneumonia and we will be here until at least tomorrow. So, our Thanksgiving 2011 is being spent in "3 West" of Lucile Packard Children's Hospital (LPCH). We are very thankful for LPCH, but not very thankful to be spending Thanksgiving here! The real kicker is that my JP (my husband) has gotten sick (cold) and can't come to the hospital now because this wing is full of immuno-compromised kids. So, I am at the hospital with Bean solo today. A good friend was so good as to bring by Thanksgiving dinner from Boston Market for me at lunch and the hospital has a special dinner for Thanksgiving tonight as well. So, I'm well taken care of food-wise and it was great to socialize with someone who isn't two years old and whiny and sick!

"3 West" is an interesting place. As I said before, it is the step down floor for the PICU and CVICU, so there are always a number of transplant patients - new recipients, those waiting for transplants and those like Bean who are in here a number of months/years post-transplant due to other complications. There are also those with surgical heart repairs healing, lung and respiratory issues, and other medical issues. There are very small babies all the way up to teens. There are very vocal patients (not unusal to hear the belligerent screams of toddlers or preschoolers dealing with nursing visits, needle sticks, etc.) and very quiet patients. There is constantly traffic through the halls as a lot of patients are told they have to walk around in order to get discharged. Many are dragging IVs or carrying drainage tube containers or feeding tube bags. Some are being towed around in red wagons by parents and still others are being carried by parents. Many are wearing masks due to their immune systems being compromised. I must say that most people look exhausted. It is exhausting on this floor. In the PICU and the CVICU, the nurses are assigned one, maybe two patients. Here, they are typically covering two or three rooms and their job is to make sure that parents and caregivers are ready for what they will experience at home. So, they encourage parents and caregivers to do the work - feedings, diaper changes, giving medicine, etc., but they are having to do a lot of training. And there are sleeping couches in each room because unless you have a very good sleeper and/or feel comfortable with the possibility of them crying or being uncomfortable until the nurse checks on them (versus the nurse being in the room with them as in the CVICU or PICU), you really need to plan on being here overnight. Its not a great place to sleep, but it is better than a chair.

I never sleep really well when I'm here because there are constantly people in and out of the room or Bean wakes up and cries a bit, and I feel like I need to comfort her immediately (how horrible it must be to wake up in this room with an IV in your arm and now oxygen in your nose?). So, I'm up and down all the time. But, the nurses are usually very nice. They try to be as quiet as possible when entering, doing their work ups and exiting. The first night, the nurse brought me cookies. They always ask what they can get for you. So, although they are training you for dealing with the realities of your medical situation once you leave the hospital, they are very supportive and nice about it. And with us, there really isn't any training going on, because we have our routines down for giving meds and I've dealt with just about all the possible things (keeping diapers for weighing, keeping track of liquid and food intake, where the extra blankets and pillows are located, what all the machines are and what the different alarms mean. The only thing I had forgotten is how to disable the alarm on the IV machine, but that has now been refreshed!

Overall, LPCH is pretty good place to be if you have to be in a place like this. I'm thankful this Thanksgiving that we are lucky enough to have a team of doctors and nurses looking after Bean's health and although I would much rather be visiting my in-laws this week and eating too much for my own good and then eating more...I am happy that we have access and ability to have Bean here and to be sure that her health remains as good as it has been. We hope to go another two years (or maybe even more) without an overnight stay in 3 West, but if it turns out that we have to be here again, we will accept that. Taking care of Bean's health is priority number one for me. And this place seems to do it right.

We did get some great news today while sitting in this hospital room - the biopsy result was another zero! That was two in a row now...for the first time since transplant! This could mean that Bean's immune system will be weaker (since it is a sign that the anti-rejection drugs are suppressing her immune system a bit more effectively now). Which means we will have to be a bit more vigilant when dealing with any health issues around our house. But, we'll take that...and take the zeroes!

Hope everyone out there had a good Thanksgiving!

Fantasy Land Friday - From Transplant to Triathlon

noreply@blogger.com (2ndheartmom) — Sat, 19 Nov 2011 06:32:00 +0000

I originally came up with the idea of a Fantasy Land Friday post to identify all those things I wish, hope, yearn, and/or envision for my life. For instance, a clean house or a completed to-do list. Anyways, you get the idea. But, this first Fantasy Land Friday post will focus on something a bit different. I don't spend a ton of time thinking about Bean's long-term future. I don't know if that is normal or a result of fear or denial or just the result of my seeming inability to plan ahead for anything. I also think that its difficult at this point because she's only two and I don't know what her interests or talents are yet. But, I'm sure that part of it is fear of the future and what it will bring. Because of that, I love stories like this one:

Transplant recipient in second Ironman - Sherwood Park News - Alberta, CA

There are a few things I love about his story. First, his transplant was back in 1986, which is pretty early in the transplant history, so long-term survival was usually predicted to be shorter than today. He says that they gave him 10 years, and now, almost 30 years later he is competing in Ironman triathlons! The second thing I love about his story is his willingness to be a "guinea pig" so-to-speak for figuring out the amount of stress a transplanted heart can take. I would love for Bean to do sports - not necessarily Ironmans, but some kind of sport and if she decides she wants to do a sport seriously, I would love for her to have confidence in being able to do that. The last thing that stood out for me was his recognition that many recipients never get the chance to meet their donor family. The media typically covers stories that include both the recipients and the donor families. Everyone asks about the donor...and its strange to know absolutely nothing...and hard to explain, but totally understandable from my perspective. But, perhaps at some point in the future, we will come to know more even if we never meet the donor family. And even if we never know more, I will always hold that family and their angel donor in my heart. And I will try to make sure that Bean does the same. I could not help but think that a boys suicide 30 years ago has given this man a chance to do amazing things and something that seemed hopeless and senseless has become something so full of hope and so meaningful.

So, here is something inspirational that I will definitely have Bean read in the future. Its a great story - hope you enjoy it as much as I did!

Thankful Thursdays - Aunt Dawn

noreply@blogger.com (2ndheartmom) — Fri, 18 Nov 2011 06:33:00 +0000

Taking Starfish and "Bat Ray" out for a stroll.

Above is Bean, last weekend, with the stroller she conned my sister into buying for her while looking for shoes and the rubber starfish and manta ray they got at Michael's. My sister, Dawn, was taking care of her so I could travel south for a speech and debate tournament. She was supposed to be going with me, via car, but we had a rather traumatic end to that idea - which included Bean being locked in a car for about a 1/2 hour, having to be removed by AAA coming to pop the lock. Embarrassing, yes. Not as scary as it might sound because Bean loves to drive the car, so she spent most of the 1/2 hour doing just that, snacking on yogurt snacks she pulled out of a bag I had packed for her, etc. She got a little upset towards the end, but overall she handled it relatively well. I, on the other hand, had a slight breakdown after we got her out and decided I couldn't really deal with the drive to Southern California. So, my sister volunteered to keep her for the weekend.

Dawn has been a lifesaver this year. With my travel schedule often colliding with Jason's travel schedule, and Bean being at an age where hanging out at a speech and debate tournament all weekend is not all that exciting, there has been a number of weekends where we needed someone to watch the Bean. And it makes it nice that Bean loves Aunt Dawn - they go to the park, lots of walks and she usually gets to go see Grandma and Grandpa (my parents) while visiting her, they've gone to the zoo, the insect museum at UC Davis, and lots and lots of parks. I realize that Bean is not an easy child to take care of - she takes multiple medicines multiple times every day (she is much better at this - she often gives them to herself with a little help now), for a while she was snoring like a chainsaw during the night (this has also gotten better - we now think she had a bit of a respiratory infection because once she got on antibiotics, she is sleeping so quietly we often have to check to make sure she is breathing regularly), she is about as belligerent as they come (she is in that stage where she says no to everything - and she has now taken to throwing things when she gets frustrated). But, Dawn has never complained. She always says she is good. She never says anything about her not sleeping well or hogging the bed or kicking her while she is sleeping. She deals with the fact that I am often an organizational mess and forget a coat or the right shoes or pajamas. And she never asks me for anything in return. Its really something that I don't take for granted. It makes my life so much easier than it would be if I had to take her with me to all these places or find child care for a whole weekend.

So, today, in honor of what I will call Thankful Thursday, I would like to thank my sister for all she does and all the love she showers on Bean. As Thanksgiving approaches, I have been thinking about the many, many, many things I have to be thankful for, but this one really jumped out at me as I looked at the picture of Bean above. So confident, so happy...with the stroller, starfish and bat ray that Aunt Dawn got for her while spending a weekend taking care of her to make my life easier. Thanks Dawn...it doesn't go unnoticed!

Life is hard....dinner shouldn't be! (Review)

noreply@blogger.com (2ndheartmom) — Tue, 15 Nov 2011 06:37:00 +0000

I am constantly struggling with time. Time to get my work done. Time to spend with Bean. Time to do things that I like to do. Heck, some weeks, I struggle to find time to take a shower! Because of that, and a little bit of being intimidated by cooking, I am a huge fan of convenience foods. I often teach classes in the evening or even late into the night and having something quick to fix when I get home is a great benefit. So, I was excited when I was asked by SocialMoms to test out a new Smart Ones product from Weight Watchers and blog a review!

I've eaten Smart Ones boxed meals off and on for a while, so I was surprised when I saw the packaging. The new Smart Ones Satisfying Selections come in a steam-in bag. Its a pretty large size (see the 30% larger serving note on the packaging) and although the varieties are currently a little limited (there are five varieties available), all of them sounded delicious to me. I received coupons for two free bags and I chose the Ziti with Meatballs & Cheese and the Chicken Teriyaki Stir Fry. I was excited to try the Ziti as the picture looked cheesy and had numerous meatballs. The ease with which I was able to heat it up in the microwave was GREAT! There was no stopping in the middle, lifting the plastic cover, stirring the product and placing it back in the microwave, only to find that I didn't stir enough so the middle was cold and the outsides were burnt on to the edges. Instead, you just place the bag in the microwave with the steam side up and start it, not having to stop until its finished. No stirring. No dealing with unevenly cooked food. Just place the bag in the oven and let it steam! It was, by far, the easiest cooking of a frozen meal I've done. And I've cooked my share of frozen meals!

Now, I don't know about you, but often the pictures on the packaging for frozen foods are about as close to reality as the shows I watch with Bean on the Sprout network! They look so appealing when you pull it out of the freezer, but once the box is removed, all appeal is lost. That was not the case with the Smart Ones Satisfying Selections. The ziti came out looking like fresh pasta, there were tons of meatballs and the cheese was plentiful as well! And the taste was very good as well. I have to admit that I was starving when I made it, which I suppose could influence my opinion of the meal. But, the meatballs were tastily seasoned, the noodles were soft and fresh and the cheese was plentiful. It wasn't the best ziti I've ever had, but it is definitely the best tasting frozen food pasta entree I've had. And again, I've had my share of frozen meals!

I had the Chicken Teriyaki Stir Fry the next day for lunch. It was also tasty, although not quite as good as the ziti. The flavor was not quite as good, but the chicken was plentiful (increased protein portion is one of the perks of these selections), the noodles seemed fresh and evenly cooked and there were quite a few veggies in the mix. I just found the sauce to be a little lacking in taste.

I have lost about 14 pounds since the beginning of Summer (thanks Hungry Girl) and I was also excited to have new options in the frozen dinner area. It seems lately that the boxed varieties have shrinking entrees and just are often not that satisfying. But, these meals are definitely larger (30% larger) and more filling than the boxed varieties I've had lately. I had a slice of bread with the ziti for a late dinner and it was enough for me to not feel hungry. The teriyaki at lunch was a pretty perfect lunch portion as well. For those of you on Weight Watchers, the teriyaki chicken is a 9 point meal and the ziti is a 10 point meal. Not bad for pasta dishes! Especially the ziti, which I thought was quite cheesy.

I would definitely suggest that anyone looking for a good frozen meal that won't kill you in calories to check out the Smart Ones Satisfying Selections!

This post is part of a SocialMoms product evaluation, for which I’ve been

selected. I’ve been compensated for my time with 6,000 My SocialMoms Rewards

Points. The opinions expressed in this post are mine and don’t necessarily reflect the

opinions of SocialMoms or Heinz.

Happy Halloween Week!

noreply@blogger.com (2ndheartmom) — Thu, 03 Nov 2011 18:40:00 +0000

This is coming a bit late, so I'll call it Halloween Week. I feel like a broken record sometimes, but I've had such a busy couple of months that I am feeling constantly buried. Too much travel for work means no weekends at home to get caught up with things...a wicked, nasty case of strep throat followed up by a chest cold has not helped things...and seemingly a ton of things to get do get done in our personal lives. Its all a bit much sometimes. But, I seem to have been able to fight off the latest cold and Bean has amazingly not caught any of the bugs that have been moving through my classes, team and our home! Thank goodness.

As you can see from the picture, Bean went as a purple butterfly for Halloween this year. She refused to wear her antennae, so she looked more like a ballerina with wings, but it wasn't worth the fight. She loved trick or treating, saying "more candy" after we left each house. It helped that we don't have many trick or treaters in our neighborhood so people were more than happy to give her multiple pieces of candy. She doesn't really eat the candy, so I'm not sure why she was so demanding of more, but she loves to dump out her bag and look at all the different kinds of candy she has. And the pile is slowly disappearing, thanks to those of us around the house who would rather eat than look at it! :)

Bean is very much into Music Together class right now. We dressed up at the last class and the kids were all very cute. Here is Bean during the instrument play part of the class:

We missed out on the downtown Treat Street festivities because she fell asleep on the way there and proceeded to nap for two hours. Oh well...maybe next year. She also refused to have her picture taken with the extremely cute backdrop the Chico Mothers Club had at the Halloween Party. Sad, but true.

I can't believe it is November already. I have the Great Debate all day tomorrow at City Council Chambers, we go to Northridge next weekend for our last tournament of the semester, and then the Rookie Tournament and Nervous Novice Tournament on campus the first weekend of December. I'm exhausted thinking about it, but such is life.

I am looking forward to the week off for Thanksgiving, but Bean will have her biopsy at Stanford on Tuesday of that week, so it won't be a total week of peace. Hopefully things go smoothly for the biopsy and she isn't too upset by the whole experience. We still haven't settled on a plan for Thanksgiving and Christmas and where we'll be and for how long...another challenge to figure out in the coming weeks!

I hope all of you had a fantastic week, whether celebrating Halloween or just getting ready for the coming holidays! Its just starting to get cold (and maybe even some rain) here. I'm ready for the season change - looking forward to dressing warm, watching all the leaves turn, and even some rain! I'm sure I will be complaining about it in a few weeks, but for now, the change sounds good!

We're the lucky ones...

noreply@blogger.com (2ndheartmom) — Wed, 05 Oct 2011 06:52:00 +0000

Driving the 12-passenger...let's go people!

Sometimes it catches me off guard. I catch a glimpse of her smile or hear her laugh and I am amazed at how lucky we are to have her. This becomes especially acute when I read about other heart babies or transplant recipients who are struggling with health issues or financial issues or insurance issues. We are truly the lucky ones...I just like to publicly say that every once in a while to make sure everyone knows that I realize it...even if I don't always sound positive about things. My last post was kind of a downer, so this one is aimed at turning that around a bit!

Last week we had our heart clinic visit and I am happy to report that all was looking good. Bean did not enjoy the appointment by any means - there was much tears and "go home"s, but we made it through. Her echo looked good, she is now officially on the charts for both weight and height (albeit, 3% for height and 8% for weight, but hey, its on the charts!), and her pulse ox was 97%. Her BP was a bit high, but understandable with all the screaming and carrying on she was doing. I thought she may be a bit better because she has been using her doctor's kit at home and taking our blood pressure pretty regularly, but it just wasn't the same. So, I think the BP was not very accurate of what she usually is. We have to schedule the next biopsy - probably for around Thanksgiving - and we had to go up slightly on her prograf because her count was a little lower than they like to see it. We will get another blood test in another week or so to see if that fixed the level or has overshot their goals.

About town in Chico...she is ready and set to go!

Other than that, she has been insanely into sea life ever since our vacations to the aquariums. She used to be in love with starfish and although she still likes them and jellyfish, her new favorite is what she calls the "bat ray!" Its really more like a manta ray, but she calls it all rays "bat rays!" I put the exclamation point there because she really can't say it without exclaiming it. She wants everyone to draw them (I have become pretty decent at it if I say so myself), she wants to see pictures of them, she would like to have books about them. I have found a few books at our library about sea life that have pictures of rays and entire books about starfish and jellyfish, but she would really like an entire book about "bat rays!" We'll keep looking...in the meantime, she watches a documentary on American aquariums that I found on Netflix quite regularly and exclaims "bat ray!" every time one appears on the screen. She's just a little bit obsessed...

We are in the second season of Music Together class and she still loves it. The first class was a bit traumatizing for her because she, like her father, is a creature of habit. She did not react well when the "marching song" was not played and the instrumental we play instruments along with was not the usual "twinkle, twinkle". The songs change for each season and she had become quite infatuated with the routine we had established with the old songs. So, she cried. She screamed "MARCHING SONG!" repeatedly during another song. She cried some more. She whined "twinkle, twinkle?" during the new instrumental and refused to play an instrument. It was quite dramatic. But, the instructor of the class is awesome at handling the less-than-perfect behavior and was very understanding (thanks Tanya!) and she made it through. We had a little talk before the next class about how the songs might be different, but we could still march and gallop and play instruments, just to different songs and she was much better the second and third classes. She asks pretty much everyday if we are going to "masick" class, so she obviously loves it, marching song or no marching song!

The last thing I will say about Bean is that in the two years since she came home to Chico with us (can not believe it has been two years...where does time go?), she has been a true joy for us. She is a source of constant entertainment (even more so now that she can tell stories...which are often hilarious and totally embellished with dramatic plot lines not based in reality), constant love (my favorite is when I pick her up to carry her upstairs to bed and she sleepily pats my back as if to say "good job Mom"), and constant adventure (a trip to the store or even a ride in the car becomes an eye-opening experience when you have a two year old along for the ride). She has started to fall in love with game playing - she "plays" Yahtzee! - which to her means rolling the dice and then turning all the die over to the five and then saying "mommy, mommy - look!" and I say, "Wow -you got all fives! That's a Yahtzee!" and she says, "Yahtzee!" and we start all over again. She also knows what the name of the little gray figure is in Settlers of Catan (the robber, for those who don't know) and she knows that Daddy always plays with orange (when he was gone, someone else played with orange and she pointed to the pieces and said "Daddy's"). Her new favorite shows (other than the aquarium documentary) are Caillou and The Wiggles (which is actually an old favorite that she has brought back for an encore). She still loves Max and Ruby, but seems to have lost some interest in Mickey Mouse Clubhouse (although she still loves her Mickey Mouse books and her Mickey and Minnie stuffed animals). She still says "songs!" every time she gets in the car, even though I think I'm the only one who liberally gives into the request each and every time.

Even though I haven't had any kids before her, I know these are special times that will soon be gone. In their place will be other special times, but none exactly like these. So, I'm trying to savor some of these times, commit to memory some of the funny stuff that happens and live for the moment as much as I can. I don't want to miss out on anything, and although I'm looking forward to the future pre-school years, these toddler times are pretty hard to beat!

Thanks to everyone who has followed Bean's story thus far and continues to read. Thanks to new readers who have hopped on to hear a story or two. It really is something special to have her around and I don't take that miracle for granted...not for one day, not for one hour! Maybe for a minute or two every once in a while...no one's perfect!

Loathing Fear in Chico

noreply@blogger.com (2ndheartmom) — Tue, 20 Sep 2011 05:27:00 +0000

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

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

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

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

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

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

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