Showing posts with label Tetralogy of Fallot. Show all posts
Showing posts with label Tetralogy of Fallot. Show all posts

Friday, November 11, 2011

Cardiology Check-up



Jersey #2 had her annual Cardiology check-up.  I love that word:  annual.  Once a year.  In the Cardiology world, a once-a-year heart check-up is the ideal.  That means that her heart is in such good shape that the doctors do not expect anything to change much anytime soon.  Surgery is not around the corner.  A series of tests are not necessary right now.  Keep living your life and enjoy, for another year.  Whew!  Annual check-ups are awesome!


Jersey #2 did great.  She commented over the summer that she actually missed her heart doctors.  She has seen them so frequently in recent years, that it was an adjustment to suddenly go a full year without an appointment.  She missed the attention, for sure.  Jersey #2 was fully cooperative for her evaluation.

After her vitals were checked, and her growth was measured, Jersey #2 had an EKG (electrocardiogram), to check her heart's electrical activity...



Her Pediatric Cardiologist came in and chatted with us about lifestyle improvements since surgery, and any concerns.  She then examined Jersey #2's heart sounds, pulses, and abdomen.  

Next was the echocardiogram, an ultrasound of her heart.  The tech is a pro.  He has a movie playing to keep the kids entertained while he runs his magic wand and captures all the images and blood flow.  The Cardiologist can view the images from the room next door, in real time.  If anything is of concern, she will step into the echo room and ask for additional images from specific angles.

We return to the exam room, while the Cardiologist completes her review of the echocardiogram.  Then, she joins us and gives her report about the current status of Jersey #2's heart.

The report was excellent.  Any leaks, sounds, or enlargements are the same as they were a year ago.  That lends to the belief that there is no concern at this time.  Jersey #2 is free of medications and activity restrictions.  She was encouraged to keep playing, growing, and enjoying the life of an 8-year old.  She does not need to have another Cardiology check-up for 1 full year!  

Wednesday, February 23, 2011

Go Red For Women


Jersey #2 participated in a fund-raising event for the American Heart Association this month. She does some publicity work for them on occasion. We say that she is the cutest face of heart disease.

This time, she took us to the Go Red For Women luncheon. Go Red For Women is a national campaign to raise awareness about heart disease in women, the warning signs, and how to seek prevention and treatment. The girls of our family were invited to attend the fund-raising luncheon for this event. (The boys decided that it would be more fun if they stayed home in their PJs and played video games instead).

We dressed up in fancy red dresses. I was proud of myself for buying dresses at Christmas time, when red was rampant in the stores. I bought the dresses on sale too! We felt like princesses.

Part of the luncheon presentation was a "Survivor's Fashion Show." Each heart disease survivor walked the runway, modeling red outfits from a local department store, while the MC read a short speech about their heart condition and experience. Each survivor was escorted by a loved one. We chose Jersey #1 to accompany Jersey #2, thinking that the girls would love to be runway models for this event.

Jersey #4 and I sat in the audience, enjoying the fancy luncheon.

The event was spectacular. It was fun. There was a huge turn-out. It was the largest crowd yet. 550 people attended.

And, we learned that Jersey #1 does not enjoy being in front of the crowd. She would rather that Jersey #2 keep the spotlight. She liked the outfit. She liked the food. She did not like being on stage in front of all those people. She developed a stomach ache and stressed about it for hours. She did a great job holding herself together for the fashion show. But, she is certain that next time she would rather be in the audience.

Jersey #4, on the other hand, decided that she liked the spotlight. One of the survivors motioned her on stage at the end, and she did an encore lap up the runway, with Jersey #2. They were adorable.

They actually ended up walking that runway ramp over a dozen times after the event ended, because they enjoyed it so much. I finally had to coax the older girls into changing their clothes and returning the fashion show outfits.

Then, we took a sassy model pose on the catwalk before returning home

Thursday, September 2, 2010

Healthy Heart Update


Jersey #2 had an appointment with her pediatric cardiologist last week. It has been just over 3 months since her open-heart surgery to replace her pulmonary valve. We were anxious to learn more about the level of success of the surgery, her current heart health, and the prognosis for her future.

The results are super duper!

I smile every time I think about it. I think her cardiologist dispensed the highest level of healthy heart news I have ever heard about Jersey #2 in a single clinic visit! I just can't contain my excitement.

I praise God every day, for such incredible healing.

In a nutshell, Jersey #2 is about as healthy as can be for a person with her heart condition. That new valve is in its place and working great. It is doing its job so well that her entire health status has improved.

We see that she has grown and gained weight, which is a great blessing. Now, it has been clinically proven that she is indeed bigger than she was before. That means her heart has successfully endured a growth spurt. This is such a common thing in kids, that most parents don't celebrate it. But, in a heart patient whose growth has been altered by the weakness in her heart, this is BIG! Huge! Enormous! If I type a few more exclamation points, will it convey the level of excitement and relief I feel as a mother?!?!

This valve is serving her heart so well, that she is no longer in the high risk category for lung illnesses, such as the flu. This means her heart is performing well enough to keep her lungs healthy too. This is a first for her. A milestone. This is incredible!

Another thing that is absolutely incredible is that her cardiologist does not need to see her for another evaluation for ONE WHOLE YEAR! Hallelujah! Annual check-ups with the cardiologist are the best outcome for a heart patient. Jersey #2 will require annual check-ups for the rest of her life. But, when her heart is weaker, those check-ups have to occur more frequently. We knew things were going downhill when she started having to be checked every 6 months. When it dropped to every 3 months, we were quite nervous for her health. We were not expecting her to return to annual check-ups so quickly following surgery. Her recovery has been amazing!

Jersey #2 will continue taking an aspirin a day, to prevent blood clots around that new valve, for the next 3 months. The time line for the body's endothelial cells to cover that new valve so that it no longer appears foreign is 3-6 months. Since Jersey #2 is tolerating the aspirin well, and is not resisting taking it, her cardiologist would like to err on the side of caution and have her take it the full 6 months of that recommendation. (I give it to her every day at lunch time, and she has not had any trouble with it upseting her stomach). After that (around Thanksgiving), she will be medication-free....which is also an incredible thing for a heart patient.

In terms of lifestyle, Jersey #2 is free to live the life of a normal 7-year old child. She has no activity restrictions whatsoever. She can push herself to her own personal limit, and her heart should cooperate well. She is essentially in the clear to enjoy life--with annual cardiology check-ups--until that valve starts to wear out. Valves can last 15 years, but tend to average around 7 years in children. We have no idea what to expect with Jersey #2 and her valve, so we will just enjoy life to the fullest until her valve starts to wear out.

The right ventricle of her heart is still quite large, but looks subjectively better than it did immediately after surgery. Time will tell if it reduces in size, or if she grows into it, or how her body will compensate for that. Right now, it does not appear to be a problem for her in any way, so that is good. We may learn more about that in a year.

Jersey #2 will need antibiotics prior to dental work and minor surgeries, as an attempt to protect her heart from endocarditis (infection of the lining of the heart). But, a chest guard is not necessary for her to play sports. Her sternum is considered as strong as it will ever be. Her pink scar will fade in color over time.

Our Tenderheart Jersey #2 is healthy once again!

Thursday, February 11, 2010

Tetralogy of Fallot Basics


Jersey #2 was born with the heart defect Tetralogy of Fallot. The details of this defect are pictured in the above image that I borrowed from the American Heart Association's website. There are 4 parts (tetra)...in no particular order...
  1. Ventricular Septal Defect: this is a hole between the two lower chambers (ventricles) of the heart.
  2. Pulmonary Stenosis: a narrowing of the path where blood flows from the heart to the lungs.
  3. Overriding Aorta: The major artery that carries oxygen-rich blood from the heart to the body is out of its place, sitting on top of the hole between the ventricles instead. This allows blood from both chambers (oxygenated and non-oxygenated) to mix together and flow to the body.
  4. Hypertrophy of the Right Ventricle: the right lower chamber of the heart becomes more muscular, due to the extra work it does to try to push blood through the narrowing at the pulmonary valve.
This combination of problems means that not enough blood is able to get to the lungs to pick up oxygen, and blood with low oxygen levels is sent out to the body. This results in a bluish (cyanotic) appearance, because the body's oxygen saturation levels are lower than normal.

Tetralogy of Fallot must be repaired with open-heart surgery. If left untreated, this condition is fatal. The technology and abilities of the cardiology field have boomed tremendously within the past 4 decades. As a result, babies born with this defect are now able to have all 4 components repaired in 1 single surgery.

Jersey #2 underwent open-heart surgery when she was only 2.5 months old. Surgery lasted 6 hours. She was on the ventilator (breathing tube) for the first 24 hours following surgery. She spent 4 days in Intensive Care, followed by 4 days in the pediatric cardiology ward of the hospital. Her recovery was on the quick end of the spectrum.

The surgeon identified the source of her pulmonary stenosis to be a very underdeveloped pulmonary valve. He had to cut through the valve in order to open up that narrowing to allow blood to flow to the lungs. He left her with a transanular patch to work in place of a pulmonary valve. He was hoping it would take her to adulthood. It lasted 6 years.

Now, she needs a new pulmonary valve to be placed in her heart. This is the open-heart surgery we are facing in a few months.


Thursday, August 27, 2009

Cardiology Check-up

Jersey #2 is a heart patient. We say she is the cutest face of heart disease! She was born with the heart defect, Tetralogy of Fallot. There were 4 things wrong with her heart...1) a hole between the ventricles (lower chambers)...2) a narrowing at the pulmonary valve, where blood goes to the lungs for oxygen (pulmonary stenosis)....3) her aorta (major artery carrying blood away from the heart) was out of place, hanging out at that hole between the lower chambers instead--which meant it was carrying blood that had oxygen, mixed with blood that did not have full oxygen...and 4), the right ventricle (lower chamber) was enlarged, because the muscle was having to work so hard to push blood towards the lungs, due to the narrowing.

She underwent a successful open-heart surgery when she was 2.5 months old. The amazing surgeon was able to fix all 4 problems with 1 single surgery. Unfortunately, her pulmonary valve was underdeveloped, so he had to cut it to open that narrowing. She has lived with a mesh patch in place of a valve so far. She has to be evaluated by her cardiologist regularly, to keep an eye on her heart, and to make sure that patch is still working. Due to the nature of this particular heart defect, she will require cardiology check-ups her entire life. She will also require a valve placement....and future valve re-placements throughout her lifetime.

Yesterday, we visited the cardiologist for an annual check-up. Annual is the best kind of heart check-ups, because that is an indicator that a patient is at their best heart health! I took a few picture along the way...

After taking all of her vital signs, the Cardiology Tech sets up for the EKG. Jersey #2 asked her how many sticky tabs she was going to use. The answer is 10.



EKG...10 wires attached via sticky tab to specific areas of the chest, provide electrical readings to the attached computer. It takes longer to set up the sticky tabs than it takes to run the EKG reading.



Jersey #2 got to remove the sticky tabs all by herself. She was mighty proud...



Next was an exam with the cardiologist, followed by an echocardiogram (an ultrasound of her heart). I didn't get pictures this time. After the echo Jersey #2 gets to pick a toy out of the prize box. This is very important to her. She did not let her cardiologist forget that part of the process! We then met up in the exam room again to discuss the findings of the day.

Unfortunately, the cardiologist announced IT'S TIME! Time to get that valve placed. Everyone had hoped Jersey #2 could grow to adulthood before getting that first artificial valve. Unfortunately, her heart is not going to cooperate with that plan, so they need to act sooner. The next step is a series of tests to make absolutely sure her cardiology team is acting at the "right" time to place the valve.

First up, the Holter monitor. This is a portable EKG that stays attached for 24 hours, giving a complete report of the electrical patterns of her heart throughout a whole day and night. We do not want her right ventrical to start failing, and throw off the rhythms of her heart. Jersey #2 wears this monitor and goes about her life as normal.



She is such a good sport about all of the medical interventions she must endure. And, clearly, she is the cutest face of heart disease!

Friday, June 26, 2009

The Calm Before the Storm

Growing & birthing Jersey #2 was my absolute easiest pregnancy & delivery! Dr. S jokes that it was because she was "brewing something BIG!"

When hoping for a pregnancy, I am so impatient during that "2-week wait" between the window of opportunity for conception, and the time when a home pregnancy test will register. I did not have to do any hoping and waiting with Jersey #2, because she was a surprise! When Jersey #1 was just over 6 months old, I started having the desire to plan another baby. My husband thought I was crazy! It is quite common for bereaved parents to have only 1 living child after a loss, deciding to not take anymore chances after that. My husband was of that mindset. I wanted more. I was called to motherhood, and I loved it! We discussed the topic off and on, until he realized I was quite serious about wanting another child. So, when Jersey #1 was about 10 months old, we sat down and had an "intellectual" discussion about the "best" spacing of siblings. (I've posted about that topic earlier). We decided 2.5 years was our ideal, so that was the timing we were waiting for. So, when my cycle was much later than usual, we quickly learned that all of our intellect and reasoning was futile, because I was already pregnant!

I had quite a bit of morning sickness in the first trimester (which I've learned is typical of my pregnancies with my daughters). I also liked to sleep a lot. Thankfully, my husband was a pro at taking care of Jersey #1, so they gave me lots of opportunity to sleep.

I had an early "dating" ultrasound with Jersey #2 around 12 weeks, and an anatomical ultrasound at 21 weeks. The ultrasounds showed a healthy baby each time, and at 21 weeks we learned that she was a GIRL! Considering my husband is the oldest of 3 boys, and his father is the oldest of 6 boys, I was highly amused that we were growing our 3rd daughter! We joked that we were balancing out the generations.

I continued to work full time, even after having Jersey #1. I took 3 months leave when she was born, and then we enrolled her in a daycare center near my work 4 days a week. My husband worked from home on Fridays and cared for her while she was young (and slept a lot). When she became more mobile, we both switch to the 9-80 work schedule that gave us every other Friday off, and we took turns being home with her on Fridays. This was the schedule we were working while I was pregnant. I loved my Fridays home with Jersey #1. I also found myself more comfortable at work on the Fridays my husband was at home with her, versus the work days she was in daycare. I started to doubt that arrangement. As we talked about my desires, and about the family budget, we came to the conclusion that it would be better if I cut down to a part-time work schedule. My boss gave her approval. I began my new schedule of working only 2 days per week, at the start of the month Jersey #2 was due.

When was she due? A window of opportunity opened up when the "dating" ultrasound gave a due date for Jersey #2 that was 1 week earlier than my cycles predicted. The ultrasound also gave a margin of error of + or - 1 week! Normally, we would just go with the date from my cycles, since I am usually so accurate with my record keeping! But, this time around, Dr. S repeatedly mismatched the dates across all my prenatal paperwork. This gave him a nice justification to provide another "mercy induction" if I started to fall apart at the end. He could schedule an induction any time that week I was due (and still follow hospital policy of not inducing before 40 weeks), since the ultrasound paperwork would have shown me to be 40 weeks and overdue already. He left the option open. I was certain I felt strong enough to make it to the end.

Sure enough, I started to freak out as that last week approached. Mackenzie died in the womb 3 days before her due date. I was induced and delivered Jersey #1, 3 days before her due date. I was scared I was not going to be able to function when I reached 3 days before Jersey #2's due date, as I was starting to immensely fear losing her. So, we opted for another "mercy induction." Dr. S. scheduled the induction date, and told me to eat a good lunch and report to Labor & Delivery at noon. His resident would get things started, and he would join us after his clinic was closed that evening. My sister took a day off college and drove up to stay with Jersey#1.

This time around, I was actually 80% effaced at the start of induction! Wahoo! My body was actually doing something to prepare for childbirth (for a change). I was not dilated at all. The first dose of Mesoprostol was inserted, and contractions began about 30 minutes later. My husband & I sat and played Scattegories and waited for some action. The nurses would join in and help us brainstorm words when they came into my room to assess me.

The 2nd dose of Mesoprostol is usually given 4 hours after the first dose. Dr. S. had arrived by then. I was starting to feel the contractions, and I was not real thrilled about enduring another labor. I decided I would prefer an epidural this time around. I was already 4cm dilated, so an epidural was ordered, and I was switched to Pitocin instead of a 2nd dose of Meso. The epidural went in smoothly. I was told the epidural would not take away the pressure, just the pain. I was also told I might have some uneven numbness. I don't know what that anesthesiologist was talking about, because that was the best epidural I have ever had! I was perfectly numb in all my childbirth areas, but I could still move my legs. I had no pain, no pressure, no problem! I knew that it would be better if I was in a position to let gravity help the baby descend, so I asked the nurse to help me prop up one end of the bed so I could rest comfortably in a nearly upright sitting position. Dr. S. was going to remain at the hospital that night. My husband had a pull-out chair in the room with me. The plan was to sleep through labor, due to the awesome power of the epidural! My husband and I slept peacefully, listening to the sounds of Jersey #2's heartbeat on the monitor.

When we woke up 8 hours later, I was starting to feel some pressure and contractions. Dr. S arrived at the point I was starting to have to breathe through the contractions. I couldn't remember if I was suppose to breathe fast or slow. (That's what I get for claiming that childbirth prep classes were "useless" because of my "abnormal" experiences.) Sometimes I was just holding my breath, because I couldn't decide. Dr. S. casually reminded me to breathe slow....and that worked great! He checked me and I was 10cm dilated, but a piece of my cervix was still forming a ledge. No worries, I could push through that. But, Dr. S. was concerned that the baby's head was still so high. Once again, the amniotic sac had not broken on its own. He did not want to break it, like he had done for Jersey #1, because he feared if the baby's head was not right there, then the umbilical cord could swoosh on out with the gush of fluid, which would ultimately result in an emergency c-section. Dr. S. contemplated his options and asked our opinion. We assured him that we would deal with whatever came our way, and we trusted his judgment. He suggested he could use a needle to poke a tiny hole in the sac, to let the fluid come out slowly, and maybe that would help the head lower before the cord. It worked! The amniotic fluid leaked slowly, and Dr. S guided her head with his hand, and made sure the cord was not there.

Jersey #2 must have been up in my ribs, because I had to push and push to get that girl out. My husband, Dr. S. and the nurses were cheering me and encouraging me greatly. At one point they cheered so much I asked if she was crowning? No. They told me that I had pushed her down from the North Pole, and now she was finally at the Equator. Ugh. I still had to push her across half the globe! I was determined. I pushed and pushed some more. The nurse exclaimed, "Look at all that hair!" when she was finally crowning. I was excited to see it too, so I pushed her right out. Jersey #2 was born with a full head of black hair. She was beautiful.

When things go well, the husband is offered the opportunity to cut the umbilical cord. My husband was not interested in that tradition. He does not have the stomach for biological stuff. Dr. S. knew this, which is why he gives The Referee the "job" of watching the contraction monitor. This time, when Jersey #2 was placed on my abdomen, Dr. S held up the umbilical cord and a pair of scissors and asked my husband if he wanted to cut the cord. Do you remember those cartoons where the character ran through a wall and left a cut-out of their shape in the wall? My husband nearly left his shape in the wall. He saw the cord, the scissors, and the smile on the doctor's face, and he jumped back so fast, and so far, exclaiming "Dr S NO!" that he nearly crashed through the wall. That was funny!

Upon examination, Dr. S discovered that Jersey #2 had a very loud heart murmur. She was breastfeeding well, sleeping well, and crying without turning blue, so the pediatric cardiologist refused to examine her in the newborn nursery. He suggested that most murmurs that are detected at birth resolve on their own by 5 days old. He suggested that Dr. S listen to it again in 5 days and refer us for a cardiology evaluation if it was still there. Dr. S knew that murmur did not sound normal. He was correct. It was still there at 5 days old. At 2 months old, the cardiology evaluation revealed that Jersey #2 had the congenic heart defect Tetralogy of Fallot, which could only be treated by open-heart surgery!