NEXT APPOINTMENT: June 28, 2010 7am, Sedated Echocardiogram
Due to a scheduling error by the hospital, today's appointment was moved to June 28, 2010. This was a little disappointing as it is hard not to be a little anxious to find out what Maren's oxygen saturation levels are, and for her to have the sedated echocardiogram. This procedure will, among other things, give the doctor a picture of the size of her right ventricle (from which to guesstimate); give a measurement of her tricuspid valve; tell us if she is hypertensive (a narrowing) in her pulmonary artery; take a look at her "PDA Stent" to see if it is partially occluded; and look at her pulmonary valve to see if it is obstructed (again); and finally, in general, give some idea on how the blood is flowing through her heart. It has been since December that we had such critical data-- But of course, Maren LOOKS amazing and IS quite amazing!!
June 8, 2010: 1 Year Check-Up
Maren visited her pediatrician for her 1 year check-up on June 8, 2010, and they confirmed what we see: Maren is making her milestones.
30 inches long, 65th percentile in length
40th percentile in weight (not as fat as some have suggested apparently!)
75th percentile in head size (big ol’ brain)
She passed her hearing test.
No signs of heart failure, (note, they don’t test for oxygen levels or take chest xrays, but the doctor does feel her organs and feet primarily.)
while every day is another real time, real test, we go back to see Dr. El Said at Rady's on June 22 for a sedated echocardiogram which will be our first picture of Maren's heart for some time.
30 inches long, 65th percentile in length
40th percentile in weight (not as fat as some have suggested apparently!)
75th percentile in head size (big ol’ brain)
She passed her hearing test.
No signs of heart failure, (note, they don’t test for oxygen levels or take chest xrays, but the doctor does feel her organs and feet primarily.)
while every day is another real time, real test, we go back to see Dr. El Said at Rady's on June 22 for a sedated echocardiogram which will be our first picture of Maren's heart for some time.
June 5, 2010: Miracle Makers Gala
Jessica and I were lucky to attend a black tie benefit for the Rady's Children's Hospital at a table purchased by my law firm. The event was sold out, and was attended by nearly 1,000 people. The goal of the gala was to raise money for the new Acute Care Pavilion, which will be home to the new Peckham Center for Cancer and Blood Disorders, the state-of-the-art Warren Family Surgical Center, and a Neonatal Intensive Care Unit that is truly family-centered. This is the surgical center and NICU which housed us after Maren's birth and was the site of Maren's surgeries, and the will be again in the future. Recall, the catheter lab at Rady's, which is outfitted to enable catheter procedures on babies like Maren draws patients from Hawaii, Riverside and San Diego. And yet, with rapid advances in medicine, it still needs updates, as components of the technology (Xray arms and machines used during surgery, monitors,...) are outdated.
You can learn more about Rady's Foundation: http://www.helpsdkids.org/
You can learn more about Rady's Foundation: http://www.helpsdkids.org/
March 22, 2010 Appointment
Maren saw her cardiologist on March 22. Her SpO2 oxygen reading was 90% and her chest x-rays did not show signs of congestive heart failure. This is fantastic news. Based on her stable condition and stellar physical condition and development, the doctor pushed back the potential MRI scan procedure and has scheduled Maren for another sedated echocardiogram on June 22, 2010. This is great news. Hopefully, it means no surgeries until September.
Every day that Maren can heal on her own, without the risks of surgical intervention, the better. In fact, the very latest studies on babies with conditions similar to Maren's suggest that "catch-up growth" of small right heart structures DOES HAPPEN. Although, this is debated in the medical community.
Incredibly, the entire May 2010 edition of Progress in Pediatric Cardiology, a journal that publishes approximately 4 issues a year, is devoted to PAIVS, and includes research that supports the existence of catch-up growth. In simple terms,this means that if a normal baby has a right ventricle size to left ventricle size ratio of 10:10, while Maren's started out at 5:10, it is possible, in time, for her to close that gap and have a ratio, of say, 8:10. This catch-up growth, is what we are praying for and, we hope, witnessing.
Next Appointment Update
Maren's next appointment was moved from February 22 to March 22, 2010. This appointment will be a check-up type appointment-- they will check oxygen levels via pulse oximetry, take lung x-rays to search for signs of congestive heart failure, and we will talk to the doctor about potentially scheduling an MRI of Maren's heart for a clearer picture of what the latest is. So, we wait...
Maren is 9 months old and is 19 pounds (big girl!). She is close to crawling; up on all fours and scooting around doing the army crawl. She babbles and plays and grabs things. She has been teething for the past couple of weeks and her bottom two teeth have popped through. OUCH!! Her favorite foods are avocado, banana, prunes and zucchini and has started to grab the spoon and try to get it in her mouth to feed herself. Maren's brothers Oliver and Ethan love to "take care of her" by bringing her toys and making her smile and laugh. They call her Mare-Bear.
December 14, 2009
Maren went to Rady's Childrens Hospital today for a sedated echocardiogram so the doctors could get an updated picture of the size and dimensions of her right ventricle. She had not been seen by her doctor since her surgery on October 23, 2009. At that time, it seemed likely that heart surgery would be set for around February 2010 - whether as part of a 2 ventricle repair or a 1.5 ventricle repair. We were bracing for this surgery and expecting the type of surgery to be dictated by the results of today's test.
But, Maren is on her own calendar, and apparently has her own heart plan in mind which she had not yet decided to share with us. The test today showed that she has improved just enough - yet again - to push off the surgery decision as to 2 ventricle/1.5 ventricle. The 1.5 ventricle plan appears more probable than not. Her ventricle is a little bit bigger - "but still not big enough" according to her doctor. Because her oxygen levels are still 95%, and the pressure gradient in her right ventricle and across the pulmonary valve is improved (which was a major goal of the October 23, 2009 procedure), we are still not under the gun to make a surgery decision right now.
So, rather than surgery in February, we are now scheduled for a routine checkup in February. If there are no surprises between here and there (namely, a decrease in Maren's oxygen levels), the plan is to schedule Maren for an MRI in an effort to get a clearer picture of her ventricle. This MRI could be scheduled for approximately late March 2010. We are encouraged by the fact that Maren's progress supports the risks and costs of the MRI - which requires general anesthesia to insure Maren does not move at all - and is the cutting edge of right ventricle mapping. (See
But, Maren is on her own calendar, and apparently has her own heart plan in mind which she had not yet decided to share with us. The test today showed that she has improved just enough - yet again - to push off the surgery decision as to 2 ventricle/1.5 ventricle. The 1.5 ventricle plan appears more probable than not. Her ventricle is a little bit bigger - "but still not big enough" according to her doctor. Because her oxygen levels are still 95%, and the pressure gradient in her right ventricle and across the pulmonary valve is improved (which was a major goal of the October 23, 2009 procedure), we are still not under the gun to make a surgery decision right now.
So, rather than surgery in February, we are now scheduled for a routine checkup in February. If there are no surprises between here and there (namely, a decrease in Maren's oxygen levels), the plan is to schedule Maren for an MRI in an effort to get a clearer picture of her ventricle. This MRI could be scheduled for approximately late March 2010. We are encouraged by the fact that Maren's progress supports the risks and costs of the MRI - which requires general anesthesia to insure Maren does not move at all - and is the cutting edge of right ventricle mapping. (See
http://www.pvrireview.org/article.asp?issn=0974-6013;year=2009;volume=1;issue=3;spage=180;epage=185;aulast=Blyth
(And Scroll down to cardiovascular magnetic resonance imaging)
(And Scroll down to cardiovascular magnetic resonance imaging)
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