Blended Feelings

Yes, I’ve been avoiding you. The blog has always been a place where I can dish about River’s life and spill my guts out all over so I feel better. I, hopefully, have helped a parent or two. But I haven’t wanted to share on the daily humdrum of tube feeding. I can’t deny that I’ve been sad about our slide back to a 50/50 tube feeding lifestyle.  River’s backtrack on by-mouth success over last year had us progressively going back to using the g-tube. We have had such great hope for our daughter’s success at oral eating, but for the time being I believe we have found a balance.

Her percentages fell below her typical curve in January 2014, and we had the GI and the nurses all freaked out about her weight(lack of gain). DH had never seen Dr. P look so distressed by it before. So we added even more calories to her daily tube feedings. Her need for weight at this time outweighs the need to push getting off the tube. She had her four-year checkup recently and she has bumped back up to her curve and the doctor was not concerned about her growth, and believes that River is just a petite little thing and may always be that way. It does give us great pleasure to see the pounds growing on her, she weighed in at 29.4 lbs today, and that is giant news around here, that is a fabulous number!

Now, 3 months later, we continue to tube feed her approx. 12 oz a day of a blenderized diet that we concoct. Since then we’ve also pulled her out of preschool. Preschool did not work out after all, and, since I graduated, there was no need for the day care. She became more and more upset about going to school, and she was not handling well the constant over-smothering by her classmates. Some of this distress may have contributed to her lack of weight gain over the winter.  Chill time has been much needed after a hectic last four years, so we also pulled the plug on speech therapy(especially since her speech has grown by leaps and bounds), and will return to that at another time. We believe that her weight gain has been in response to us going back to a blenderized diet using a Vitamix. We used this method to feed her before the first attempt at weaning her at 21 months old. We strongly believe that better nutrition(real whole food) has a huge impact on her weight and health. We were told to just start giving her more of the Boost drink she was on, which of course is just filled to the brim with refined ingredients and loads of sugar. Her blender food consists of only whole fresh ingredients.

Sample recipe:

  • 2 cups organic whole cow’s milk
  • 1 cup organic brown rice cooked pasta
  • 1/4 cup flax oil
  • 1/2 cup organic spinach
  • 1/4 cup organic carrots
  • 2 tbs. organic peanut butter
  • 1/4 cup organic hemp protein powder
  • 4 oz. organic whole milk yogurt

This recipe produces a calorie count of 1.7 (which is 1.7 calories per every 1 ml) and makes 925ml (just under 4 cups) and lasts us about 3 days. But most of the time we just wing it. Sometimes we add other things like cooked organic eggs, olive oil, current seasonal vegetables, a banana. She also takes gummy multi-vitamins and fish oil. If River notices us making her blend, she may even have a request for us to put in something she likes, usually it’s apples. We have our next appointment with GI in May, and we will talk about all of the concerns revolving around River’s eating and weight, and to change out her AMT mini(not fun). She is currently eating at every meal and still loves food and drink, and hopefully sometimes she consumes enough bonus calories in the day herself!

❤ Today, River had her annual cardiology check up. It’s such a pleasant office, it’s sights and sounds bring me the opposite of comfort. But going in, I was not that worried, although I’ve had some nagging questions, and one which has been heavy on my heart lately. We took Ewan with us, he said he was interested in seeing River’s heart and I just couldn’t deny such a great learning experience(and a reason to have him with us to keep River happy – which he does a great job at). Ewan was able to escape school for a few hours, and observe an echocardiogram(although he’d been years ago, he doesn’t remember).

Photo Apr 23, 11 06 33 AM
Three thumbs up after only a few shed tears at the ekg.

Everything went great! River’s echo and EKG looked fabulous. Her bicuspid aortic valve and aorta are the primary areas of concern these days, as of today the aortic arch(site of COA repair) looks great with no narrowing, and her valve looks the same as before, the same amount of small leakage is there, but not enough to be a concern. River never has any complaints about breathing, her chest or heart. Finally, it was time for my questions for the year…. First I want my yearly dish about her coronary artery defect, I want to know what the doc thinks about her future with that concern. He explained that a CAT scan will be needed on her heart to get a full three dimensional image and map out the coronary artery and it’s origin, and that will be coming up for her around the age of 10. Then we will all know more about how big of a risk it is in her life and if a repair is in order or not. Ok, Ok, that calmed me a little, it’s still definitely a big “if” and she is just too young to know more.

Now…the question I wasn’t sure I wanted to know the answer to, but it finally dawned on me recently about women with CHD’s and pregnancy. Would or could River carry a baby without endangering her life? I have been fretting and gnawing on this question for months now. Sure, it’s entirely likely some doctor told me 4 years ago this answer and in my trauma-induced state I’ve completely forgotten. Each person with CHD is different, and there is no blanket answer, there is only her individually to assess.

Reluctantly cooperating, being a big brave girl
Reluctantly cooperating, being a big brave girl

My heart froze up for a moment and I braced myself, I couldn’t believe I was willing to go through this with the children in the same room. They would certainly see me lose it if the news was….well….not something I could handle lightly. I owe a huge SIGH OF RELIEF to Dr. Park today, he gave me the answer I was hoping for with all my heart.

Yes. At this time, River’s heart conditions are considered ok for pregnancy. Of course, cardiology would be involved in her pregnancy, monitoring her. It is a possibility in her life, if she wants to, have children. Weeping on and off since I got home, and celebratory enough to finally come crawling back to this blog 🙂

Happy Fourth my little pixie, here are some pictures at her birthday party:

Photo Mar 16, 11 33 41 AM
Her beautiful cake by our dear friend
Photo Mar 16, 2 13 06 PM
Her Hello Kitty/St. Patrick’s Day theme birthday
Photo Mar 16, 1 01 09 PM
Party at the Children’s’ Museum

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

Jamie’s Heart Foundation and Mended Little Hearts

Jamie’s Heart Foundation is a wonderful family run non-profit founded out of Puyallup, Washington. They assist the Mended Little Hearts of Puget Sound group that I am a member of. I wanted to make sure you were all aware of Jamie’s and MLH and what a huge benefit they are to families exactly like mine. If you are ever looking to donate to any charity that actually hits home, these are the ones. You’ll notice River is on this page of Mended Little Hearts: Groups.

Jamie’s Heart Foundation provides financial support to CHD families that might be struggling due to the many different reasons why one might because of their child’s heart illness. Jamie was a beautiful two year old girl who’s story is so heart wrenching that I can’t even think about her without losing it. There is a special clinic room just for her at Northwest Children’s Heart Care, and River always gets this room.

Her foundation will be the spotlighted non-profit group at the Tacoma Rainier’s game on July 1st. Here are the details, and here:

Jamie’s Heart Foundation CHD Awareness at the Tacoma Rainiers

The Tacoma Rainiers are welcoming Jamie’s Heart Foundaiton and CHD families to Cheney Stadium on Sunday, July 1st. Jamie’s Heart Foundation is the featured non-profit for the game and will have special moments throughout the game bringing awareness to congenital heart defects and CHD kids.

Game starts at 1:35pm. Please come out to Cheney Stadium to join us. Visit the Tacoma Rainiers website to purchase your tickets.

Free Tickets for CHD families on July 1st

Jamie’s Heart Foundation has free game tickets to give out to CHD families. If you are a CHD family and would like to join us, please email us at info@jamiesheart.org with the number of tickets requested to reserve your tickets. CHD family tickets include reserved section tickets as well as a meal voucher for a hot dog, chips and drink.

We look forward to seeing you at Cheney Stadium!

I recently made up a flyer for our MLH group, it will be passed out at the game:

River is a TWO YEAR OLD!

It’s finally here! The 2 Year Old Post!! Our precious River Belle is officially two as of March 17th, 2012! And she is more than officially a toddler 🙂

Since River turned one a lot has changed, I will try to sum it up: At one she had her MRI on her spine, and by august had her spinal surgery to correct her “tethered cord”; she made a great recovery on her torticollus (titled head), and finally became mobile by way of butt scooting; she traveled to Utah, Wyoming, and Vancouver, BC and had some amazing vacations; she made amazing progress on her oral aversion, started weaning and is now past aversion and vomiting and a true eater; she went from being 100% tube dependent to 50% dependent; she went from being formula fed to a complete blenderized diet to eating; she grew from being 19.4lbs at 1 year old to 24.5 lbs at 2, she grew in height over 4.25″; her mama began full-time school and River started a new routine with a friend as her nanny; she began walking and is now almost a complete walker, with just a little scooting on the side; she continued with feeding therapy with Jennifer, and physical therapy with Jean, and also started occupational therapy which had greatly increased her willingness to experience movement and start walking; during the last year she also had check-ups with geneticists, ophthalmologists, and cardiology; she was diagnosed with early-onset astigmatism but everything else checks out good; she went on two awareness walks, one for congenital heart defects and the other for apraxia; and she went from being super duper ultra cute beautiful baby to amazingly uber cute sweet and beautiful little girl. One heck-of-a-year!

For River’s 2nd birthday we kept it low-key and family-centered, the kids got up in the morning to green shamrock pancakes and a green hello kitty cake! River wasn’t quite flowing with the events though, she is after all a toddler now. When we gave her the cake with the candles to blow out she decided that it was a good idea to touch one! Ouch!

Here's the happy girl with her cake and finger burn

Then was presents, and she also wasn’t too keen on that, unwrapping isn’t exciting yet. But overall she enjoyed all of her presents very much, especially the musical instruments from her grandpa, and the dolls from her other grandpa and nana.

A great tutu from her grandma!

Then we had a great dinner at the Old Spaghetti Factory!

Followed by the Tacoma’s Children Museum the next day! We all had a great weekend celebrating our very special little girl. And I can’t wait to see the amazing things she does in the next year of her journey!

Ewan and River at the Children's Museum

Coming up in the next several months for River is a trip to Seattle Children’s Hospital for a feeding clinic evaluation; a speech and hearing evaluation at Mary Bridge; more PT and FT as needed, we may try some orthotics in her shoes to see if it helps balance her a little more with her walking; continuation on her periactin and work on her eating; and then in June a trip to Utah for a family reunion(her daddy’s side)!

One Year Ago – River’s Heart

River and I at the Mended Little Hearts picnic July 2011

On this day, the 25th of August 2010, River had her 2nd heart procedure, 1st open-heart surgery, to repair her large VSD that was causing her heart failure. This day was, needless to say, a very big deal. The surgery was much needed and River had lived 5 months of her life in heart failure, and everyday leading up to surgery seemed to get harder and harder. She was in full swing oral aversion by then, and that was not too change.

What I remember most of all was the part where I had to turn her over. Actually every time I’ve had to do that is the most difficult for me.

I couldn’t believe I had to trust all of these other people to take care of her, her life literally in their hands. But I did it anyway, I gave her to them, I entrusted them with her life. And gratefully, they gave her back to us. I was at peace with this surgery, unlike the first time around when she was only 2 weeks old and so tiny and fragile. I was excited for her to finally live and breath easily. To see her not struggle just to do the normal things a baby should be doing. Her VSD repair went amazingly well.

Just before handing her over

In the following 48 hours she had to be on CPAP for her breathing, but eventually she was more stable. And as each day went by in the 10 days of her hospital stay she grew stronger and stronger. She healed very well, and her little personality shined through. She was actually happier in the end. She smiled more than ever before. You could tell that she felt better!

It was the result that everyone prayed for. August 25th was a good day! A day that the miracle of modern medicine saved my daughter.

In a few short days we are going to have to do it again. I will give her over to strangers and hope and pray that everything will go as expected. I do my best to stay positive, but it doesn’t matter. I’m a mother, and I worry.

River's recovery room, post-op
River at Mary Bridge, almost time to go home!

Marching forward

A regular week for our family is 3 therapy sessions, always throw in a random appointment too. This week was speech therapy for Ewan, PT and FT for River, and then the dentist for Ewan. I seriously need a personal assistant. Or a nanny, I would take a manny, an au pair, an Alice, a robot Rosie, or a Mary Poppins. Thankfully I have the rare opportunity to stay home with my children. Even if I had been a work-away-from-home mama, one of us would have had to quit our jobs for River. We would have wanted to, whatever it took. I know some business mama’s that would like to stay home, I know some home mama’s that would prefer the office. Most mama’s I know are where they want to be. I am. But it’s the damn hardest job I’ve ever had in my life. It doesn’t even surprise me these days that the laundry, the recycling, the dishes are piled up out of control some days(most days). But I understand my priorities.

Testing out a bottle of milk

If River’s is due for a feeding, a treatment, a diaper change, the recycling can wait. Or, you know, if I have a DVR full of Castle and Fringe, the dishes can wait.

Lately River’s oral skills have leaped forward! Even her SLP is shocked some days at what she’s been doing. This week at feeding therapy, as usual it takes a while to warm River up to getting the food in her mouth, but once it’s there we are seeing huge improvements. She still gets us with a vomit every once in a while, but she’s so stellar that after she’s recovered and cleaned up, back to food play!

Vanilla yogurt at feeding therapy

Yesterday yogurt was the big hit again, and I’m finding that the blander the food is, the better. This morning I have her sitting at the table with a little bottle of milk. Cow’s milk. Even though we don’t feed her milk-based formula, she doesn’t seem to have an allergic reaction to dairy. And out of all “milks” we have, cow’s is the blandest, and when it’s in her mouth she licks it and tastes it without a gag.

It’s a slow march forward for River, but forward she is going! I often am amazed at her easy smile, and her angelic demeanor. Someone in the store the other day asked me if she was born with a smile? I wanted to tell him, no, she was born a fighter, and her smile did not truly appear until after her surgery. How, after all of her trials, has she managed to shine through it all? How are we, as a family, not broken, divorced, or all in therapy? Call it God’s Grace if you will, whatever it is, it’s truly amazing. And I am grateful. And I would be very grateful if someone could send me a robot Rosie to do some dishes.

Awareness is what’s cool these days

Being an advocate for your child is not a luxury. Although not everyone who has a special needs child is out hitting the streets to raise awareness, we all wish we could. But being an advocate for your child is not just about “raising awareness”, it’s a daily battle to keep up on top of your child’s special needs. You have(emphasis HAVE) to keep up on top of your child’s healthcare team and doctors, you have to make sure they are not forgetting about certain details. You have to make sure they are specializing and tailoring their care based on your child’s specific needs. You have to become educated on all your child’s unique medical conditions. You Have To. That to me is being an advocate. Otherwise you might find your child’s conditions worsening, or falling through the cracks of the medical system. I am an advocate for River and Ewan. But I would also like to go outside of just their needs and help speak for the needs of all children of like conditions. I would love to find unique and creative ways of spreading awareness and raising funding for research. But that requires a whole other level of energy and workload. One day I will be able to do more. But in the meantime I will do what I can.

The week of Feb 6 – 12 was determined to be Feeding Tube Awareness week, it overlaps CHD week.

http://www.feedingtubeawareness.com is a new website devoted to our tubie kids, and formed by tubie parents. IT’S AWESOME. I’m so happy this organization has started, I know it will just grow and grow and grow! I wish to participate, but I feel already that I’m being pulled in different directions! Heart or Tube, Heart or Tube??!?

I love them both. But I feel that my pull towards CHD Advocacy will overrule my activities.

But:

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