2 year anniversary: Open-Heart Surgery

August 25, 2010: We needed to arrive at the hospital around 6 AM, with our son staying at a friends, we checked in while the whole hospital seemed asleep.

getting prepped

It took a couple of very causal hours up in the Pediatric Intensive Care Unit to prep her gently for surgery. She was just 5 months old, and we hadn’t been back to that hospital for 3 months. Living there for the first 2 months of her life was the most trying time in my life. To be back came with very mixed emotions. Life saving surgery. Baby on life support. Open-heart surgery. Huge risks. Huge rewards. I managed to hold it together that morning. Handing her over was very difficult, and the next 3 hours very long.

The ride over the next few days was very bumpy, last year’s anniversary post is here. Our stay was 10 days and I felt like I came home with a new baby! You cannot take away the very real risks involved with any surgery, for anyone. Especially not this type of surgery. We are extremely fortunate to live very close to a children’s hospital who had a very amazing heart surgeon. I feel extremely blessed every time I remember the experience. And every time I look at her chest scar I feel gratitude and joy. That scar is one of the best things that ever happened to her. I love her scars, every one of them.

All settled in after surgery 8/25/10

Being two years away from that day is also a blessing! We have a little heart-healthy girl, on no medications, and can be active and enjoy life to her fullest extent. We are also 2 years closer to the next time we must take her into open-heart surgery. Still a ways off, but in about 6-8 years it’ll be time to do it again. This time with more trepidation since the procedure to repair her coronary artery defect is controversial, comes with the same risks as all other open-heart surgeries, and she’ll remember. But we are granted with the luxury of time right now! So I get to tuck that away for another day.

Looking back and remembering, I think sometimes how impossible it nearly was for me to endure these events as a mother. As a family we went through some serious hell. River was so ill and fragile, and endured so many health complications and procedures, my heart stops when I think of it all.

Truly impossible: life without River.

Beginning to recover!
The Amazing River Belle

My Heart Work

As I mentioned a while back I was working on a theme for my art this spring quarter at school. The Evergreen State College is a great place to attend school, they have a wonderful program called Individual Learning Contracts. Which gives you the freedom to occasionally pursue your passions, and earn credit for them. I chose to recently pursue a painting contract that revolved completely around River’s heart defects. I wanted to explore my relationship to them, and also to do some medical illustration. I was fortunate enough to have assistance from River’s Cardiologist Dr. Derek Obayashi, who sadly is leaving our clinic to go to Boston. Big Frowny Face. He was a huge help in having a specialist to show my work to so I could be corrected and learn greater accuracy. He was also very willing to further teach me about congenital heart defects! Dr. Obayashi has known River since she was one day old.

The following is the artwork I accomplished in the last 10 weeks:

Four Chamber View, Healthy Heart
Anterior View, Healthy Heart
River’s Heart
A Heart Mother
3 lbs 12 oz.
River’s CHDs

Many little updates

Sunny Spring Day!

So we have a few things to get caught up on with River! Over the last few weeks River has been to Seattle Children’s Growth and Feeding Dynamics clinic; her 9 month check up with Cardiology; GI clinic check up; Feeding therapy with Jennifer; and is OFFICIALLY a walker! And in the next couple of weeks will go so a speech and hearing evaluation.

Being a perfect angel during the echocardiogram

Cardiology: We finally got to see Dr. Obayashi after a 9 month hiatus! River had to go through the regular testing, ekg’s, blood pressure, and an echocardiogram. She was an amazing perfect patient for the technicians and the doctor. Everything checked out great! I don’t think River has to go back for another 9-12 months. It was also a good opportunity to chat with Dr. O about my current art projects regarding hearts and CHD. He is assisting me as much as he can by helping me pinpoint River’s CHD’s so that I can try to visualize them and eventually have several illustrations of her heart. Dr. O loves little River and has been amazed by her health and progress!

Getting her EKG

Seattle Children’s: Last week we visited Seattle Children’s Hospital for our long awaited Growth and Feeding Dynamics Clinic evaluation appointment! We decided to get this referal because they offer an Intensive Feeding Clinic that is a two week long program. I wanted to learn more about it and consider whether or not this would be a good place for River. They did a lot of the usual intake questions, they had to learn River’s history. We met with their feeding team, and talked about River’s journey with feeding tubes and oral aversion. I explained to them about the at-home wean that we attempted and they were extremely impressed by the progress she’s made with eating. Their program consists of two weeks, Monday through Friday, weekends off, where you go in the morning and do three back-to-back feeding therapy sessions until the afternoon. To do this program we would have to live up at the Ronald McDonald House, because the commute is just too brutal, and I told them I would be uninterested in it if I wasn’t staying in-town. They do believe River would be a great candidate for their program. By their estimates River is an acceptable BMI and growing at an adequate rate (very assuring :)). The other thing we talked about being a big plus for River’s oral eating is the need for peer interaction! They use to do the baby picnics and peer modeling at this clinic but that has declined, and it can be very tricky to find age appropriate peers while your child is in the program. I said that is a huge factor for me as we readily see River’s oral eating improve if she’s eating with her brother or other peers.

Now it’s on me!! I have to decide if I think their intensive program is the best thing for River! We are tentatively scheduled for the program during the first two weeks of September. I would have to move up to Seattle during that time. I’m going to weigh all the pros and cons and hopefully discuss this with families that have been through this same program.

Loves her elephants

Dr. Pickens: River had her weight and nutrition check up last week, following her regular feeding therapy. She did really well in FT and we are mainly working on her ability to chew food properly, and to encourage more drinking fluids! Fluids with calories is a huge part of a toddler’s consumption of daily calories and requirements for growth! Dr. P is happy that the Periactin at least proved to be somewhat an appetite stimulant and we discussed keeping her on it for longer intervals. As long as her appetite appears to have some improvement from the use then we are going to try and keep her on it for up to 7 weeks at a time before breaking. She is currently on it, and still seems to have a slight upswing in her drinking and eating while on it. Her weight is still hovering around 24lbs, but they are satisfied she is gaining weight again and don’t see a current need to increase her diet. We discussed the visit to Seattle. Dr. P has had one other patient attend this clinic, and they did see it help, as the child was at a 0 in the oral department, and the clinic helped him greatly increase his oral eating, but the commute was their biggest complaint, and the need for peer modeling.

Here’s a video of her walking (to Dr. P’s office):

Things are moving along on my CHD project and I’ll have a separate post soon regarding some of the heart art pieces!

One Busy Summer!

Me and some boy with a grimmace, and River in the cutest swimming suit!

It’s been a while hasn’t it? Our summer has been very full, and thankfully I’ve enjoyed it! We returned from our month-long visit in Utah at the end of June. We jumped right back into appointments and therapies, outings and swimming lessons! Utah was a great experience for my children. We all had fun and got to visit in-depth with our many family and friends.  We will return next year for another long Utah vacay. One way to describe our summer is that I am just now uploading my photos from my camera, 330 photos are transferring to my harddrive as I type. Yes I’ve neglected a ton of work lately!

Let’s get to business: River is doing great all around! We had our 6-month cardiology clinic with Dr. Obayashi a week ago. He was very excited to see us after such a long stretch, and River’s results are completely fabulous. Her heart is operating on par with a normal heart. There is no holes or leaks(murmurs) anywhere. Her repaired areas are all looking great! Couldn’t be happier with that visit! We won’t return for another 9 months to check up again.

As far as River’s oral feeding go, they are moving in the right direction! She is still not eating what I would consider countable. I don’t count any of those calories because they are not enough to even bother keeping track of. A cheerio here, a veggie stik there, a few bites of soup over there. But she is very willing to try new things and always wants some of what we are putting in our mouths. She shouts and reaches and even shows her tongue if she wants some! She, of course, still has the occasional vomit due to gagging on food. But these are getting better and less often. She drinks water now all the time. I always make sure she has a cup nearby, she even has been using straws lately! I am just about to start measuring the amount because I think it’s on the cusp of being significant fluid intake. Not quite yet, but soon! Here blenderized foods are also going really well. We’ve recently been able to increase her intake, her tummy seems to have grown! We can now do 4 oz. at a time, and we feed her four meals a day. We’ve also introduced dairy yogurt and whole cow milk. I had previously had her on soy/hemp/rice milks, we always thought she was a little dairy intolerant, but that seems to have changed or gotten better.  I still give her alternative milks, but having some whole milk does increase the calories!

Physically River has gained tons of strength since June. She is called “scooter” by some. She scoots her butt around anywhere now. She loves to play on the floor, and often gets up in a all-fours stance, sometimes balancing on her head. She can crawl. I say that tentatively because she chooses not to crawl. If we hold her legs in a crawl position and encourage her, she will crawl around, but still hasn’t realized this is a valid form of transportation! She is also beginning to enjoy walking with us holding her hands. It’s still very unbalanced but it’s a start! She is also on the cusp of pulling herself up on everything. She has been caught several times recently standing against something all by herself! I am starting to be concerned about her neck though, her torticollus neck has made an appearance again lately. I’m not sure if this is because she is developing her other physical skills and her neck is taking a back step? We will see our PT next week again, so hopefully she’ll have a good solution.

In other news, we are attending a CHD awareness walk tomorrow! I just heard about this last week, but since we had nothing else going on how could I say no?!?! Here is the link on that: http://imhwalkforchd.kintera.org/faf/home/default.asp?ievent=470071

We have a few upcoming appointments for River, next week she will have her genetic consultation. We are not sure what will come of this, but the reason we are going is to find nothing. I want to know for certain that nothing has been missed. In 2 weeks we have a consultation with a neurosurgeon (finally). He will just be reviewing that MRI River had back in April. Hopefully he will have more of an answer for us on this possible tethered cord syndrome.

Now it’s time for photos!

Uncle Dan, River, and Aunt Becky
Grandpa and the kiddos at the Museum of Ancient Life
Nana Diane, Ewan and River at Hogel Zoo
Ewan and Lily at Lagoon
 

CHD Awareness Week 2011

This week (February 7 – 14) is Congential Heart Defect/Childhood Heart Disease Awareness Week. It is an excellent time to spread awareness of this devastating condition.

My painful and involuntary introduction to being a heart parent happened shortly after River was born. Since River was born a “2 vessel baby” (she had Single Umbilical Artery in utero) she got a mandatory echocardiogram. SUA babies have a 40% chance of heart defects. Fortunately this was necessary. And this had nothing to do with her significant prematurity. They caught her defects right away. Many other babies are not so lucky.

Her first surgery was a left thoracotomy(surgery going into the left side of her chest) and it was an “extended end to end repair of the coractation of the aorta”. This surgery took place on 3/31/10. River was 1.7 kg, and only 2 weeks old. In other words: TOTAL NIGHTMARISH EMOTIONAL TRAUMA. I just went over all of my day to day “diary” entries on Carepages, the way I used to keep our family and friends up-to-date on River’s progress. I was so factual, and put a positive spin on everything I wrote. I tried desperately not to scare everyone, or let them know what a total and complete wreck I was. I didn’t want them to feel my pain, I didn’t want them to cry everyday like I was.

Here were the first few days:

3/31/10: River is now currently recovering in the Ped ICU. She had a successful surgery, and the surgeon Dr. Ronald Woods was very pleased and said everything went as well as it could go. The surgery was to repair the Coarctation of her aorta. It was done through the left side of the chest (thoracotomy) and it is considered “closed heart surgery”. She will be recovering for the next 24-48 hours in the PICU, then will be relocated to the Mary Bridge ward for a few more days. Following a hopefully speedy and uneventful recovery, she will then be moved back into the NICU to continue her preemie treatment until her eventual home coming.

4/1/10: Today’s progress has been good. River’s chest tubes came out very early today. Her breathing tube will be removed soon. They are concerned about fluid in her lungs, but it has been getting better throughout the day. They expect her to be out of the PICU by tomorrow and by to the NICU and back on track to feeding and growing.

4/2/10: River’s breathing tube was removed yesterday afternoon. She is back on CPAP to assist her with her breathing, her symptoms related to her breathing are just still due to her preemie-ness and not her heart. Currently her heart is sounding good. She will begin feeding today again, breastmilk delivered through a feeding tube. She is expected to be released from PICU tomorrow and go back downstairs to the NICU. Her heart surgery recovery(incision site, etc) has gone well.

This was all very true, but so lacking in the truth of the matter. If you read between the lines you might read that I saw my baby stop breathing and turn gray and watch the PICU team jump into action. You might read that I was losing my mind with anxiety and fear. You might truly understand what it could be like to be the parent of a baby with CHD.

Below are some pictures I’ve never shown. They break my heart, but now it’s in the past I can share them.

Below is a CHD fact sheet. Research is terribly underfunded! Please raise awareness!

CHD FACT SHEET

Incidence, Morbidity & Mortality

  • Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in theUnited States.
  • Each year approximately 40,000 babies are born in the United Stateswith a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

CHF

  • The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
  • The Children’s Heart Foundation has directed $3 million to 34 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
  • CHF has published and distributed 15,000 copies of It’s My Heart, a patient and parent resource book.
  • CHF has established five Chapters and has volunteers in many USstates.

Lifelong Disease

  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

  • More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
    In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

*taken from http://www.childrensheartfoundation.org/about-chf/fact-sheets

And in Heart news…

On 1/11/11 River had her follow-up with Dr. Derek Obayashi, her pediatric cardiologist. It consisted of an EKG, vitals, and an echocardiogram. In one word the outcome of the appointment can be summarized as

E-X-C-E-L-L-E-N-T!!!

River’s heart is in great condition following her two surgeries. Dr. O says that the aortic arch (surgery #1) is looking great! Of course that is thanks to Dr. Woods! Sometimes in premature infants, even though the coarc is repaired, scar tissue can again cause some narrowing, which may need a second repair. Fortunately he is seeing none of this in River. Her VSD repair is also looking great! There had been a small residual VSD following surgery #2, but it has since closed up! There had also been a small tear or leak in another area following that surgery, and that also has since closed up! Both leaks had been noticeable in her ECHO following surgery #2 back in September. The other good news Dr. O told me was the thickening in her right ventricle which was a side effect of her heart working so hard to compensate for the VSD has started to decrease!! Again, like I said, this was a “great news” visit!!

Here River is with Dr. Obayashi! Aren’t they cute?!

Here is a short video of her during her ECHO, it’s a little dark, but she did really good most of the time and held the tech’s hand.

I would also like to go into detail about River’s heart for those that are interested. I, myself, am also trying to come to a better understanding and knowledge of how River’s heart has formed, and in general the cardiopulmonary system. I always try to seek out life long education, and am of course now inspired to educate myself on something so affecting our lives.

This is a diagram that Dr. Obayashi drew for us after River’s first heart surgery, the coarctation of the aorta repair. (This was back when she was also filed under “Tribble”!) He also listed at the top her diagnosis, it’s a long list. I’ve highlighted a few things on this picture to illustrate where he drew in some of the defects:

The “stitches” on the Aorta are where the first surgery took place, a small narrowed section was cut out and then the Aorta was reconstructed. Below the Aorta is where the PDA was closed off. The thing that looks like a mouth is her Bicuspid Aortic Valve. Normally we have a Tricuspid Aortic Valve. The other sections I’ve highlighted are the upper two ASD’s, and the large VSD(near the bottom). The little “eyes” above the bicuspid valve “mouth” are where the coronary arteries branch off from, one of those is the anomalous origin of the right coronary defect. She will later in childhood undergo another open heart surgery to repair this feature. Her right coronary artery is branching off the aorta incorrectly, instead of a nice straight branch, it is at an angle and located askew of it’s normal position. This defect has been linked to sudden death in adults. The coronary arteries are feeding the heart it’s blood supply and carrying the necessary oxygen to keep your heart pumping, this defect can possibly “pinch” off this blood supply, and that is why it can be fatal, and fast.

I will also include a diagram of a normal heart.