A Heartfelt Donation: Medical Masks in Anya's Memory

Many of our families appreciate most, our care packages which are specially designed for newly diagnosed HLHS families.  We're always humbled when families contribute to our care packages in honor and memory of their children. 

Today, we wanted to share a mom and daughter whom we hold close to our hearts.  What better way to honor her motherly instinct than helping other moms do the same. 

Karen and Anya Wockenfuss

I'm Karen Wockenfuss, and I consider myself blessed to be a heart mom. I found out at 19 weeks pregnant that my precious baby girl Anya had Hypoplastic Left Heart Syndrome. A parent never forgets those words "your baby has a congenital heart defect." She was born at 3:24 AM on August 27, 2012 weighing 6lbs 2oz. She had her Norwood procedure at two days old, and although the surgery went well she had a few complications afterwards (chylothorax and blood clots requiring lovenox injections). She also needed a feeding tube and had g-tube surgery at 6 weeks old. She finally came home on October 16, 2012, at 7 weeks old. Having her home was the best 15 days of my life, and I loved my new normal. I am a heart mom.

Karen's precious daughter, Anya

Anya suddenly passed away on November 3, 2012, for reasons unknown. I miss her so much. In becoming a heart mom I have met so many amazing, strong people, in those heart warriors still fighting and their parents. I am passionate about staying involved in the CHD community and keeping Anya's memory alive.

I make re-usable, machine washable face masks for adults and kids in cute prints. In Anya's memory, I am donating 50 of my adult face masks to Sisters By Heart to be included in their care packages. These will be especially useful for moms right after their baby has had the Norwood procedure. In addition to the initial 50, for every face mask I sell, I am also donating an additional one to Sisters By Heart.
 

To order your own face mask for $8 (or 2 for $15), please visit 'Crafting & Crochet by Karen' on Facebook: http://www.facebook.com/pages/Crafting-Crochet-By-Karen/172687209455948

To read the rest of Anya's story, please visit: http://emoreeandme.blogspot.com

Thank you, Karen, for thinking of our families in your time of grief.  We know our families will truly appreciate this gift from your heart.  Karen has been busy and has already shipped 100 masks to Sisters by Heart for inclusion in our care packages!

They're such a perfect addition to our packages, as we always love to promote health and happiness during the interstage period!


Karen's generous donation in memory of Anya

Parent's Perspective: What to Pack for the Hospital

One of the most-asked questions by our expecting moms is, "What should I pack for the hospital?!"

In response, we reached out to our experts, the heart parent community, to ask what they found helpful. We've collected their suggestions and created the below checklist in an effort to make packing much less stressful! While the list is geared more towards expecting families, it's really great for anyone facing a hospital stay with their child. The list contains suggested items for baby, parents, siblings and a 2nd page for relocating families. It's in a printable format so you can right-click-save and print a copy when you are ready to start packing!

If there are any items items you found helpful that we have not listed, please let us know and we will keep the list growing!  

Happy Packing!

Getting a 2nd Opinion: An Inpatient Perspective

Earlier this week, we shared the story of a family who sought a second opinion for their son while he was outpatient and non-critical. Today, we bring the story of a family who sought a second opinion under completely different circumstances, for their son, who was inpatient and very critical. Thank you, Teri, for sharing Finley's story!

(Teri and Finley)

Hopefully this subject never pertains to your child, but if it does, I hope this post will help you navigate the process easier.

Requesting a second opinion does not mean that you have lost faith in your home hospital and team. Since larger hospitals have a higher volume of patients, they have seen and dealt with more complications and may have ideas your home hospital is unaware of that could help resolve the issue. Unfortunately, our situation was such that we wanted a transfer, not just a second opinion. It is up to you to decide which avenue you wish to seek. Sometimes the second opinion you receive will propose a plan that your home hospital cannot perform and a transfer would be required to implement the plan.

A little background – My name is Teri Chrislip. My son, Finley, is 23 months old and is 13 months post Glenn. He was discharged five days post surgery on a low fat diet with a blake drain due to chylous effusions. They told us that it could take up to six weeks for it to resolve. His surgeon felt we were capable of managing his care at home during this time. We had no idea it would turn into a six month nightmare. Finley was in and out of the hospital multiple times due to electrolyte issues caused by the drainage. Those stays included two caths, one of which turned into an emergency open heart surgery. We finally came to the realization after rushing him to the emergency room with labored breathing which led to another PICU admission that we needed more input. We made a verbal request of our team that day to send his records off to Boston to get a second opinion. He was averaging 30 ounces of drainage a day. Six days later, Finley coded and we made the decision that a second opinion was not enough. We wanted a transfer.

My inner mama bear went in overdrive. I contacted another heart mom to help us seek our own second opinion from Boston because we were not having luck working with our home team. She put us in direct contact via email with Dr. Jim Lock, the head of cardiology in Boston. Thankfully, upon reviewing his file, Dr. Lock felt he could help Finley and wanted him transferred to Boston so he could perform a life saving cath. Because his plan could not be implemented at our home hospital, Finley’s air medical transfer was approved in three days. Dr. Lock performed his cath four days after our arrival in Boston. Within eight weeks of that cath his drains were removed and we have been home for over seven months straight! We are still weaning diuretics, but Finley is doing amazing. He has gained over six pounds and is making huge strides in his development.

Below are the steps I suggest for any parent seeking a second opinion and/or transfer when your child is in critical condition:

1. Pick the hospital you want to seek a second opinion from and contact them directly yourself. If seeking a transfer, I would narrow it down to one hospital. In my opinion, if you do not narrow it down, you could get two different opinions that could hold up the transfer process. If requesting a second opinion only, you could request opinions from several hospitals. Each hospital is a little different on how they handle second opinions and/or transfers. Advise them that you have a critically-ill inpatient child and your needs are very urgent. They will provide you the requirements on what information they need to prepare a second opinion and where to have it sent. Most hospitals will request your most recent echo and cath (on disc) along with recent surgical and inpatient reports. If you do not already have a cardiologist and surgeon in mind, they will likely assign one for this process if it is required. Our home hospital would not send files without them being directed to a specific doctor(s). If you are unsure on who to contact or how, ask your fellow heart moms. Most top hospitals have a dedicated phone number or email address specifically for second opinions. Scour their website; I know Boston has each physician’s email addresses listed.

2. Once you know what you need and where to have it sent, put your request in writing to your current team. This was one of our biggest mistakes. We lost an entire week by starting with a verbal request that was not followed through on. Be sure to include a deadline of when you expect them to have the files sent. We gave them 24 hours due to the extreme critical situation. Just prepare yourself that it could get confrontational. If only asking for a second opinion, some doctors may take it personally. If asking for a transfer, some doctors and hospitals will be worried about being accused of negligence. They may be scared that the new team could find errors they made, simple things they missed, etc. As soon as we notified them of our intentions to transfer, we had more doctors involved in Finley’s care than we had the whole time! The attending cardio had not been in to see Finley for the entire week prior to our request. Trust me, no hospital wants a lawsuit on their hands!

3. Contact your insurance company immediately to see what their requirements are for a transfer. They are pretty hard to get approved, especially air medical transfers. We had a wonderful nurse case manager that helped us facilitate our request. The biggest issue in getting a transfer approved is that the receiving hospital must be proposing a plan that your home hospital cannot implement, and your home hospital must admit that to your insurance company. If not, most insurance companies will not agree to a transfer, suggesting instead that your home hospital implement the plan laid out in the second opinion. If so, you can appeal that your home hospital is not as capable as the proposing hospital and the outcome would not be as favorable which would cause a longer hospital stay. We voiced our unhappiness with our home hospital and the poor care he had received. Also, he had already had several surgeries and lengthy, expensive stays with no results. So in the end, I am sure they justified that the costs to transfer him to a hospital that could hopefully resolve his issue was far less expensive than to continue the path we were already following at our home hospital. As we all know, the insurance company will weigh the costs versus outcome.  Your other option is to pay for the transfer yourself, but it is very expensive. Our air medical transfer one way was $36,000 with insurance negotiating the rate to $18,000. You could also check into Angel Flights or other organizations that help with medical transfers. Typically one parent can fly with the child. I flew with Finley and our social worker at our home hospital provided us a prepaid round trip commercial flight for my husband.

4. If transferring, contact the social workers at the hospital where you are transferring about parent lodging and other services available. In Boston, only one parent can sleep in the room with the patient. Since we both were there, we had to make lodging arrangements. We were provided with a sleep room while he was in the CICU. Once he was moved to the floor we had to find other arrangements. Each hospital has different parent lodging available, so check with the social worker on your options. Also, your meals will begin to add up. Be sure to check to see if there is a meal voucher program, especially if you are breastfeeding. It may be only a few dollars a day, but depending on the length of your stay it could be a big help.

Remember, if you are ever in the unfortunate situation of needing a second opinion and/or transfer it is not your fault. Do not be afraid to ask for and accept help from as many people and organizations as you can. Even though we had traveled to Boston for vacation previously it was still scary. We knew the ins and outs of our home hospital and lived only 30 minutes away. Taking a medical flight half away across the country and having our child admitted to a new hospital was overwhelming at first. Just remember, you have been through a lot already and you can do this for your child.  Just put one foot in front of the other, one step at a time!

Getting a 2nd Opinion: An Outpatient Perspective

We often hear heart moms asking whether or not they should seek a second opinion. Our response is always the same – even if your child is not critical, if you have any concerns about your child's care, yes, you should definitely seek out a second opinion. With complex CHDers, a second set of eyes never hurts.

In the next two blogposts, we’ll be sharing the stories of two families who sought  second opinions for their HLHS children.  First is Paxton and his mom, Jessica, who sought an outpatient second opinion leading her across the country for Pax’s Fontan surgery. Jessica shared with us some great insights about what the second opinion process is like when your child is outpatient and not-critical, and how to go about maintaining good relationships with your home care team during the transition.

Thank you, Jessica, for sharing your journey with us!

(Jessica and Paxton)

Almost six months ago I passed my three-year old son over to a surgical team for his lateral tunnel Fontan at Boston Children’s Hospital. What had started as an information-gathering opinion on my son’s complicated heart and pulmonary structure turned into a 1,800-mile trip from home to the team who has ultimately saved my son's own heart.

A few months prior, I sat listening in disbelief as our “home” cardiologist sprung it on me once again that we were possibly headed down the road of heart transplantation. It had been discussed off and on since Paxton was five days old. Despite having had a dozen heart procedures, many being emergencies, Paxton was thriving with half his heart and a compromised left lung. I asked myself, “How could a child doing so well need a new heart?”

That very day I felt a strong urge in my heart to seek another opinion. I knew I had one chance at my son’s life. It was so hard to tell the team who had saved my son’s life time and time again that I needed more. After all, they became part of our extended family. I apologized repeatedly, but his cardiologist reminded me that Paxton was his baby too, and that he also wanted the very best for him.

Were his feelings a little hurt? Yes. Was his pride a little less? Yes. Did he shed a tear or two as we were leaving? Yes. I truly think it was because he had been working to save Paxton for years. He knew his case well and the thought of someone new inside my son’s chest concerned him. Upon my request, every detail of Paxton’s history was sent to Boston Children’s Hospital for a second opinion.

A top cardiologist at Boston Children’s was selected to review Paxton’s extensive and complicated history. A few weeks later we received the report in the mail that concluded Paxton had received good care at his home hospital and that they would have done nothing differently with his treatment at Boston. That was so reassuring to me because I was not seeking a second opinion to find fault. We did and always will love our home team. But what came next in the report stirred my emotions as a mother of a fragile child whom we had fought so hard to save. A final recommendation of treatment could not be made unless Boston performed a heart cath on Paxton. The report gave me no clear answers. Did my son truly need a new heart? And would my son with a compromised left lung even be eligible for a heart? My heart ached for more answers from one of the very top heart teams in the country. I knew we had to make the trip from Missouri to Boston.

I was at peace the very moment my eyes looked at Boston Children’s Hospital. A sign ran across the entrance to the building that read “Ranked #1 – U.S. News & World Report.” At that moment I realized just how easy and worthwhile the process had been to get a second opinion. What once was just a dream of having my son treated at a top heart center had turned into reality. My fears of getting lost in the crowd at a large heart center were quickly erased. I felt as if my son was their only patient. I felt as if they loved my son even though they had just met him.

As hard as it is for me to admit, there is a difference between good heart centers and the BEST heart centers. The best heart centers have the collective experience to tackle the high-risk cases and are the ones researching new treatment plans that trickle down to smaller heart centers, like our home hospital.

After completing every heart test available, Paxton went in for his pre-Fontan cath. One of the very best interventional cardiologists in the world performed the procedure and advised us that Paxton was a candidate for the Fontan. It would be considered higher than average risk, but she believed it could be done. She advised against heart transplantation.

Paxton had been at risk of sudden catastrophic event since birth. Every procedure up to this point had been high risk when it came to our son. We were not afraid to proceed. The next decision was whether or not to have the surgery performed in Boston.

The fact that my son would have a Fontan to one and a half lungs made the decision to go to Boston easy. At Boston, a team of 75 of the best heart doctors in the world would be surrounding our son, discussing his complex anatomy.

Simply put, Boston offered us more hope and experience. I chose Boston not because our home team was not really good, but rather because for this period in time Paxton’s heart required the very best!

The senior surgeon hand-picked for Paxton’s set of circumstances is in the top 1 percent in his field. He is confident and this brought me so much comfort. Even though I felt uneasy about the unknowns of traveling across the country for a risky surgery that could require a timely hospital stay, I felt such peace in the decision I had made.

Paxton amazed everyone in that he sailed through the Fontan surgery. He was up walking around the CICU with tubes coming out of his body the second day after his surgery. Paxton was back home in Missouri in just one week. Our home team could not believe that Paxton walked through the doors to see them for his post-Fontan check up just one week after boarding a plane for Boston.

All the emotions that our team back home might have felt about seeing him go to Boston all went away after they looked at him. They knew we had made the right decision for our son and they showed so much pride in our success.

Paxton’s home team is still his team. We will never take that away from them. They still love him and are still involved in his care. They are ultimately the ones who gave him his chance at life the first 12 times. It is just that we have now added to our team of lifesavers. Boston Children’s ultimately saved my son’s heart when our home hospital was considering giving up on it.

A recent post-Fontan check up at Boston Children’s proved that Paxton’s very own heart is the best that it can be. We will continue to have them check on Paxton for the years to come simply because they are one of a few heart centers, such as the Children’s Hospital of Philadelphia, that are thinking outside of the box for the future of our HLHS kids.

My husband and I are fortunate to have exceptional health insurance that paid for Paxton’s treatment in Boston. I understand that not every family has the same resources. The second opinion itself was provided at no cost by Boston Children’s Hospital. The same is available for all heart children.

I find comfort and rest knowing that I followed my instinct to get a second opinion and to follow where my heart led my son. I also find comfort in his home team that we still trust for his day-to-day care.

Ultimately, I am my son’s advocate. It is not about sparing feelings and it is nothing personal to seek another opinion. I would do it all over again. Sometimes it is necessary to separate ourselves from the team we love to make sure we are giving our children their best chance at life.

Practitioner's Perspective: Pain Management and Withdrawal

If you've been indoctrinated into the Congenital Heart Defect community, one important lesson learned is that all CHD babies and children are different.  As pediatric cardiac surgeon, Dr. Redmond Burke stated, "The babies' hearts are like snowflakes, they are never the same." 

One size definitely does not fit all.  A particular surgery may be ideal for one HLHS infant, but not for another.  The same can be said about medication administration and pain management. 

The vast majority of HLHS infants and children undergoing palliation require opiate pain medications (i.e. Fentanyl, Morphine, etc.) following the immediate post-operative period.  For various reasons, pain medications may be prolonged causing an infant to become opiate dependent or "hooked." 

It is certainly accurate to state that not all HLHS patients become opiate dependent or suffer from opiate withdrawal following open heart surgery.   As stated, each child's care and needs vary.

Recently, with growing concern and questions surrounding opiate dependency from our families, we reached out to Dr. Moffett, Pharm.D. at Texas Children's Hospital, to lend us insights regarding opiate withdrawal and methadone use in the congenital heart patient.

Methadone Use for Opiate Withdrawal

by Brady Moffett, PharmD/MPH

The most frequently asked questions I have received from parents are regarding ‘withdrawal’ and methadone therapy.  There can be a big stigma surrounding the drug methadone, even though it can be very beneficial for children with congenital heart disease who have been in the intensive care unit for long periods of time.

Below, I’ve summarized some of the most common questions I’ve received from parents regarding opiate withdrawal, methadone use, and their child.  As always, every child is unique, and the answers to the questions below provide general information.  Contact your child’s physician or the clinical pharmacist if you have any questions regarding their medications.

What is opiate withdrawal?

Children who experience opiate withdrawal have often received medications in the intensive care unit, such as morphine or fentanyl, to manage their pain.  These medications are in a class of drugs known as opiates.  When patients receive these medications in high doses or for long periods of time, they can become ‘tolerant’ to these medications.

If a child has become tolerant to opiate medications, and they are suddenly stopped, a child can experience ‘withdrawal’ from these medications.  

What are the signs and symptoms of opiate withdrawal?

Not every child will experience the same signs and symptoms, but common signs and symptoms include:  irritability, diarrhea, stuffy nose, nausea or vomiting, poor eating, high blood pressure, or high heart rate.

How is opiate withdrawal prevented?

Typically, if a child has been receiving high doses of opiate medications for long periods of time, slowly reducing the dose of the medication or reducing the number of times per day that the medication is taken will prevent opiate withdrawal.  This may occur over days or weeks, and can be done in the hospital or after discharge from the hospital.

Different medications can be used to prevent opiate withdrawal, and methadone is a very common medication used to prevent opiate withdrawal in children with congenital heart surgery.

Why is methadone used for opiate withdrawal?

Methadone is long acting, similar to morphine or fentanyl, and can be taken orally.  Therefore, methadone can be used to prevent withdrawal in patients after they have been discharged from the hospital.  Since methadone is long acting, the dose can be slowly reduced and the methadone will be slowly eliminated from the body.  This helps to prevent the signs and symptoms of withdrawal.

Is there anything special I need to do to get methadone from my pharmacy?

Your child’s doctor may have to fill out a special prescription for you to take to the pharmacy to get methadone.  Additionally, some pharmacies may not carry methadone, so it is a good idea to make arrangements prior to being discharged from the hospital so that your child doesn’t miss any doses. 

I’ve heard about people using methadone, and they are usually addicted to drugs.  Is my child addicted and that’s why he/she is on methadone?

No, in this situation, children are not ‘addicted’ and they don’t get a ‘high’ from the methadone.  The dose of methadone is carefully chosen so that patients don’t experience the signs and symptoms of withdrawal, but also don’t feel any other effects.  The methadone is helping the child feel as normal as possible.

What things should I watch for while my child is on methadone?

You should contact your child’s physician if they begin to experience any of the signs and symptoms of withdrawal as mentioned above.  Additionally, if the dose of methadone is too high, your child might be drowsy or sleeping, or appear sluggish or tired.  As always, if there is a change in your child that you are not comfortable with, or have questions about, call your child’s physician.

In conclusion, these questions represent what I have been most commonly asked by parents regarding opiate withdrawal and methadone use for their child.  There are always other questions that can come up in your child’s care, so, do not hesitate to ask if something is unclear.

Brady S Moffett, PharmD, MPH

Thank you, Dr. Moffett, for lending your time and expertise to our HLHS families. 

Nutrition Month: Busy Kiddos and Busy Families

It’s the final week of our National Nutrition Month series!  I have really enjoyed working on these posts as a resource for all of the HLHS families out there.  In this last post, I am going to review some of the feeding guidelines used after the Fontan operation, and I am going to cover some nutrition tips for older kiddos.  As promised, I’m also including a couple of recipes for the whole family to enjoy!  The postings I make on this site are my own personal opinions and do not reflect the opinions or views of Children’s Hospital Los Angeles.

Busy Kiddos and Busy Families

Before I get into talking about family nutrition, I wanted to comment on another topic that is specific to our HLHS kiddos: nutrition after the Fontan.  I’ve shared some of what we expect and how we provide nutrition for neonates, infants, and toddlers including some centers’ goal weight for the Fontan.  After the Fontan, however, some centers have different ways that they may modify a kiddo’s nutritional plan.  

Immediately following this third surgical palliation, some hospitals restrict sodium, others restrict fat, most restrict fluids, and some centers do a combination of all of these to prevent some of the post-op complications (including chylothorax) and to facilitate recovery.  These restrictions are often temporary, but they can be very important.

At CHLA, we restrict fluids while kiddos are in the hospital after the Fontan.  We also put all of our kiddos on a low fat diet for the first six weeks (or so) after their operation.  The thought is that by restricting fat, we’re trying to minimize the likelihood of a kiddo developing a chylous effusion (where fat leaks into the space around the lungs) that can sometimes happen because of surgery and pressure changes in the chest.

With the low fat diet, we usually have to acknowledge that kiddos may lose a little bit of weight but, because it’s such a short amount of time, weight loss shouldn’t be too significant.  We spend time with families helping to problem solve meals so they have the confidence they need to make low fat foods at home.  Again, this modification is usually temporary so once the cardiologist gives a family a thumbs up to resume a normal diet, there aren’t usually any lasting restrictions.

For kiddos on tube feedings, different formulas may be used after the Fontan as well.  Tube feeding changes are very individual and can be addressed by your child’s dietitian or medical team.

Once a kiddo is back on his regular diet, we encourage a variety of foods including fruits and veggies, healthy fats, and lean proteins.  Some kids do have higher than average nutrition needs so strategies for weight gain can be used but, for the most part, kiddos with HLHS post-Fontan should be following the same general nutrition guidelines as the rest of us.

What about a heart healthy diet?
The idea of a heart healthy diet comes up a lot for our kiddos with heart defects.  When we think of a traditional ‘heart healthy’ diet, we think of adults with heart disease risk factors, but having a diet focused on whole foods and healthy fats can be healthy for all of us.

In the years following the Fontan, our goal remains to keep kids healthy and growing.  When we think about what a heart healthy diet looks like, a few things come to my mind:

• After age two or so, kids don’t need the saturated fats from whole milk anymore so at that point many kids can transition to lower fat or fat free milk.
• Healthy fats can come from fish, olive oil, nuts, seeds, avocados, and other non-animal sources.  It’s a great idea to get some mixed fats into your family’s diet… and, no, fried foods are not a good source of healthy fats even if a vegetable fat is used.
• Don’t overdo it on cheeses and animal fats.  Sure, cheese, eggs, and meats can be healthy because they provide protein, vitamins, and minerals, but eating too much of these foods is not good for anyone.
• Stay away from heavily processed foods.  Processed foods often have a lot of sodium, may have trans fats, and usually don’t offer a whole lot of true nutritional benefit even if the label suggests otherwise.
• Eat fresh fruits and veggies!  It’s not new or surprising, but providing your family (and kiddos) with a colorful variety of fresh fruits and veggies will provide them with more than just vitamin C and fiber.  Plants have a variety of antioxidants that we’re still learning about and most research has said that taking a supplement is not as beneficial as eating food.

We’re busy… what can we do to keep the whole family eating well?
Even with the best of intentions, all of our nutrition and diet goals can be quickly derailed in our busy day-to-day lives.  Home cooked meals become fast food burgers and frozen lasagnas for a lot of families.  Many parents report that they just don’t have time to cook , don’t know how to cook, or feel that cooking at home is too expensive.

Nutritional benefits aside, there have been a number of studies that have proven that home cooking is usually much more affordable than eating fast food or frozen meals.  While I’m a believer that almost anything can exist in a well-rounded diet, I also believe that we should make an effort to eat well most of the time.  So what can busy parents do to prevent frequent trips through the drive through?

• Plan ahead and shop with a list: Planning a weekly menu can help cut back on grocery shopping time, save money, and prevent food waste.  While you’re at the store, it’s also helpful to focus most of your shopping on the perimeter of the store where there are fewer processed foods.
• Cook ahead:  If you have a few hours once a week to devote to cooking ahead, your food plan can be made much easier.  In our house, we spend Sunday afternoons making pasta sauce, roasting veggies, and making meals like beans, lasagna, or enchiladas that can be frozen or refrigerated and reheated for another night during the week when there’s less time to cook.  
• Get kids involved in cooking: Even young kids can help knead dough, add ingredients to a bowl, or sprinkle salt on a dish.  Kitchen tasks can change as kiddos get older and can handle more responsibility.  Including kids in cooking makes often them more open to trying new foods that they helped prepare!
• Let kids pick out a fruit or veggie at the store: For some parents, bringing kiddos to the grocery store or farmers market and allowing them to pick a new fruit or veggie is a good way for the whole family to try something different.  Again, encouraging (and allowing) kids to get involved can be a great way to get them excited about food, eating, and cooking.

What about recipes?
Historically, recipes have come from cookbooks, magazines, friends, and family members, but in the age of the internet, there are even more resources available.  The key is finding a few that provide recipes that match your cooking skill level and that you can trust for reliability.

Cookbooks: The Essential Vegetarian by Diana Shaw (now out of print) and How to Cook Everything (by Mark Bittman) are a couple of my favorites.  I always figure that it’s easy to make a vegetarian meal non-vegetarian… and Mr. Bittman’s book really does include almost everything.

Websites: I find it helpful to use magazine sites like Bon Appetit, Cooking Light, and Saveur all of whom have kitchens where recipes are well tested prior to publication.  I also like the ‘Photograzing’ section of the Serious Eats website (www.seriouseats.com) for finding inspiration.  While the pictures provide links to other websites and blogs that may or may not contain recipes, I find it to be like window shopping- I may not buy what’s in the window, but it may inspire me in some other way.

I grew up cooking Southern food alongside my parents, grandparents, aunts, and uncles so, like many others, I have a collection of family recipes that I like to refer to.  I also went to culinary school (and have my B.S. in Culinary Arts Nutrition).  Because of my cooking family and education background, I cook by inspiration and by feel more than by recipe (but that’s not how I started!).

When I bake I rely on recipes, and I try to keep note what works and what doesn’t.  The Joy of Baking website (www.joyofbaking.com by Stephanie Jaworski) is a great go-to site for me.  I especially love that all of the recipes have weight measures since when I bake cakes and things, I use a scale.

As promised, I wanted to include a couple of recipes for the whole family so here goes.  To give a little bit of background, I have been making various kinds of ‘pockets’ for a few years.  I really like that they can be frozen for a quick lunch or dinner on the go.  It’s also really easy to make different sizes for your young kiddos (just like an empanada, calzone, or other savory stuffed pastry).  I usually fill them with veggies, but you could add meat, chicken, or just about anything else.

●●●

Sweet Potato Pockets

With an Indian Flare

For those with kiddos on a low fat diet, I would suggest this first recipe since it can be made with fat free yogurt and fat free milk.  Because this is an essentially fat-free dough, it can be a little chewy, but I like it.  You can substitute some of the flour for whole wheat if you’d like and, of course, the fillings can be changed to whatever you like.  Kids can help mash, mix, and fill these little pastry pockets… though you may end up with a mess.  Have fun and feel free to get really creative!

Makes ~10 pockets

Ingredients:
For the pastry dough:
2 ½ cups flour (plus more for rolling out the dough)
½ cup non-fat plain yogurt
½ cup non-fat milk
½ teaspoon salt

For the filling:
1 pound of sweet potatoes, peeled and steamed/roasted
½ cup wilted spinach, cooked or frozen and drained
½ cup peas, cooked or frozen
½ teaspoon salt
Pepper to taste
¼ cup fresh cilantro, chopped (optional)
½ teaspoon of mild curry powder (optional)
2 tablespoons of pepper jelly (optional)

Preparation:

1. Preheat the oven to 400 degrees.Line a baking tray with parchment paper or a silpat baking sheet.
2. To prepare the dough, combine flour, yogurt, milk, and salt in a mixing bowl.  Gently mix with a fork until it comes together to make a ball of dough.  Cover with plastic wrap and allow the dough to rest in the refrigerator.
3. Prepare the filling by mashing the sweet potatoes with the back of a fork then folding in spinach, peas, salt, and cilantro.  You can add black pepper, curry powder, and pepper jelly if you’d like.  Taste the filling and adjust the seasoning as desired.
4. Remove the dough from the refrigerator and divide into about 10 pieces (or more if you’re making smaller pockets).  Press or roll each piece of dough into a six inch circle.  Add about ¼ cup of filling to each round of dough.  Fold the dough in half (into a half moon shape) and fold the edges in or press the edges with a fork to seal them.
5. Bake the pockets for 20 to 25 minutes or until lightly browned.

A few notes: You could swap out the sweet potatoes for butternut squash or even roasted cauliflower.  I do usually add all cooked items to the pockets so that the filling is soft and so that they don’t leak a lot of liquid while they cook.  One of our favorites is to make this dough and fill it with wilted spinach, feta cheese, onions, and dill for a little Greek influence.  If you’re not following a low fat diet, you can brush the outside with a little olive oil to help the pockets brown in the oven.

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Chicken and Black Bean Pockets

Tex-Mex Style

For those who aren’t on a low fat diet, I love the following dough recipe for savory pastries.  It does have butter in it so there is some saturated fat but when you break it down into servings, the amount of butter per person actually isn’t too much.  I also love the flavor of the olive oil in the crust (and it’s even better with some pepper added to it if your family likes).  These are fun to make with kids since there is plenty they can do to help out.  And you really can fill these with anything!

Makes ~10 pockets

Ingredients:
For the pastry dough:
1 cup flour (plus more for rolling out the dough)
1 cup cornmeal
5 tablespoons of butter, very cold
¼ cup olive oil plus extra for brushing
1 teaspoon salt
Cold water

For the filling:
1 cup cooked chicken (ground, shredded, or diced chicken is fine)
½ cup black beans, cooked or canned
½ cup corn, frozen or roasted
½ cup salsa
¼ cup fresh cilantro, chopped
Chopped onions (optional)
Shredded cheese (optional)

Preparation:

1. Preheat the oven to 400 degrees.  Line a baking tray with parchment paper or a silpat baking sheet.
2. To prepare the dough, combine the flour, cornmeal, and salt in a mixing bowl.  Cut the butter into small pieces and blend into the flour mixture until it looks like a coarse meal.  Gently stir in olive oil.  Gradually add cold water until the dough comes together enough to make a ball.  Cover the dough and allow it to rest in the refrigerator for at least 30 minutes.
3. Prepare the filling by mixing all of the ingredients together in a mixing bowl.  Taste the filling and adjust the seasoning as desired.
4. Remove the dough from the refrigerator and divide into about 10 pieces (or more if you’re making smaller pockets).  Press or roll each piece into a six inch circle.  
5. Add about ¼ cup of filling to each round of dough.  Top the filling with cheese if you’d like.  Fold the dough in half (into a half moon shape) and press the edges with a fork to seal them.
6. Brush the tops of the pockets with a little olive oil.  Bake for 20 to 25 minutes or until lightly browned.

A few notes: These are easy to make vegetarian with added veggies or more beans (and without chicken).  You could also swap out the chicken for another kind of meat if you’d prefer.  This is also a great way to use leftover chicken if you have some in the fridge!  I’ve also been known to use this dough to make a larger vegetable pie rolling it out to fit a 9” spring form pan and filling it with all sorts of things.

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I have really enjoyed writing these posts for Sisters by Heart; I am honored to have been included in your National Nutrition Month blog series.  I hope that the information I have provided has clarified how we think about nutrition for kiddos with HLHS as they grow.  All kiddos are different so, as I’ve mentioned, if you have questions or need help with your little one’s nutrition, let your medical team know.  I wish you all the best, and Happy Cooking!

Thank you so much, Emily, for all of your fantastic nutritional advice! All of us here at SBH, and the families we serve, have so appreciated your insights!

Nutrition Month: The Growing (and Sometimes Picky) Toddler

It’s week four of the National Nutrition Month series!  Emily LaRose, nutritionist at Children's Hospital Los Angeles, is back again, providing valuable insights into how to navigate the nutritional needs of your cardiac toddler. Thank you, Emily for partnering with Sisters by Heart to share your knowledge and advice with our families!

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In this post, I am going to provide some resources and tips to address some of the challenges we face in trying to feed toddlers.  We all know that feeding a toddler can be tough!  The postings I make on this site are my own personal opinions and do not reflect the opinions or views of Children’s Hospital Los Angeles.

Growing (and Sometimes Picky) Toddlers

Feeding a toddler can be a challenge.  As kids grow, they develop all sorts of preferences that can change without notice.  One day broccoli looks like ‘little trees’ that are fun to eat… and the next day there could be meltdowns about the mere presence of broccoli on a plate.  So what is a parent to do?

In short, it is best to stay calm.  One of the most important things to keep in mind about feeding a toddler is that eating shouldn’t be a battle.  Sometimes toddlers exert the little control they have over their ‘world’ at the dinner table.  It’s part of learning and development.  In theory, eating is the one thing that a toddler can decide not to do… and there’s not much you can do about it (in the very short term).

There are a number of feeding experts around though Ellyn Satter (http://www.ellynsatter.com/) is widely known for her realistic and practical approach to feeding little ones.  She has a great website that’s full of tips for parents of young and picky kiddos, and she has a book called Child of Mine that should be required reading for anyone feeding young kids.  I love Ms. Satter’s approach to feeding young kiddos, and I find myself referring to her work often.

When I speak with families, I usually focus on the following as a way to get started:

• Make family meals a priority.  Your kiddo is going to learn what and how to eat by watching you so eating together (without distractions like T.V. or cell phones) is really important.  If you want your kiddo to eat her veggies, you need to eat your veggies… that’s how she’ll learn.
• If you want your kiddo to grow up eating a variety of foods, you have to feed him a variety of foods.  Your child isn’t going to like everything you give him but, by continuing to offer him a variety of foods, he will be more likely to try new things.  Putting some of each of the foods offered at a meal on your toddler’s plate, even if he doesn’t eat them all, is a good way to start.
• Be very careful about saying that your kiddo likes or dislikes certain foods.  If your toddler hears you say that she doesn’t like spinach, she may not even really know what spinach is but it’s very possible that she will grow up thinking she doesn’t like it.
• Make a meal and snack schedule.  If your little one doesn’t eat much for breakfast, it’s not a great idea to chase him around the house with cereal or other snacks all morning just to get him to eat something.  The best thing you can do it wait until the next meal or snack before you try to feed him something else.  
• Kids’ tastes change really quickly.  Just because your little one doesn’t like something today doesn’t mean she won’t like it two days from now.  It’s also important to keep in mind that kids may have to see a new food 10+ times before they’re even willing to try it… and, even then, they may still spit it out a few times before they’re willing to swallow it.

What if my kiddo isn’t gaining enough weight?
Weight gain normally slows after a kiddo turns one.  Normal weight gain for kids between one and two years of age is only about 8 grams per day (which is about a pound every month and a half!).  Between two and six years of age, weight gain slows down a little more to about 6 grams per day (which is about a pound every two and a half months!).

For kids who have grown well, parents usually find there is less and less pressure on how much weight a kiddo is gaining as long as they’re on a good path.  Many times, 15 kilograms (about 33 pounds) is used as a goal weight for the Fontan with many kids reaching this goal sometime between the ages of two and five- but there are plenty of exceptions.

Having the pressure of a weight goal can make feeding feel like uphill battle for some families.  Poor heart function, oral motor problems, early feelings of fullness, and other medical problems can make weight gain difficult.  With lower weight gain norms, we have a great opportunity for catch-up growth in kids who have had a hard time gaining weight.

All kids grow differently so it’s important to know what is and is not normal for your child.  I’m a believer that we can get all kids to grow if we get them enough nutrition, but what works for one may not work for another.  Some kids need extra fat, others benefit from more protein and/or carbohydrates.

It’s always okay to ask to meet with a dietitian if you have concerns about your kiddo’s growth or intake.  Some doctors will provide you with a referral, and some insurance companies may cover visit costs.  Dietitians can help you figure out how to get your little one enough of the right foods to get him growing.  Sometimes it takes a little bit of trial and error but, with patience, things will get better.

What about supplement drinks?
Doctors may recommend nutritional supplements to help your kiddo gain weight better.  There are plenty to choose from- some with different forms of proteins, carbohydrates, and fats.

The most common supplements for kids who don’t have digestive problems are Pediasure (Abbott) and Boost Kid Essentials (Nestle) but there are a lot of others.  Many are milk based so they may not work for kids with allergies; most are lactose-free and should be okay for kids with lactose intolerance.  These products have more calories that ‘regular’ cows’ milk because of added sugars and fats, but they have added vitamins and minerals, too.

If you’d prefer, you could try making your own supplement drinks since there isn’t anything truly magical about many of the commercial products.  Of course, it’s a good idea to check with your kiddo’s pediatrician (or dietitian) first just to get an okay.

I’ve included a couple of sample recipes, but I wouldn’t use either as a kiddo’s only source of nutrition.  Either one could be added to his or her diet as a ‘boost.’  There are a lot of resources out there with recipes, but these are a couple that I have had success with.

If you were to blend the following foods you would have a drink with a few more calories and about the same amount of protein as a bottle of Pediasure (248 calories vs. 240 calories both with ~7g protein).

• 6 ounces of whole milk 
• ½ of a ripe banana 
• 2 teaspoons of honey
• 1 teaspoon of flaxseed oil

For another example, you could blend the following items for a drink with a few more calories and about the same amount of protein as a bottle of Boost Kid Essentials 1.5 (366 calories vs. 360 calories both with ~10g protein).

• 6 ounces of whole milk 
• ¼ cup of cooked/mashed sweet potatoes
• 1 tablespoon of honey
• 1 tablespoon of almond butter
• 1 teaspoon of flaxseed oil 

Since these recipes are small, you may need to make larger batches to accommodate your blender or food processor; you can always refrigerate any extra for later.  As another option, you could use baby foods that mix into milk really easily.  The options are endless so feel free to get creative; adding cinnamon, nut butters, chocolate powder, and berries are all good options- but don’t stop there!

If you were going to use almond milk, rice milk, or another type of dairy milk substitute, the recipe would not provide as many calories or as much protein as the ones I’ve included here.  Using nut butters, cooked eggs, tofu, avocado, and other additives can help to fill in the gaps- your dietitian can help you figure out your best options.

*** If your kiddo is on tube feedings, always discuss any proposed changes with your child’s doctor or dietitian before you make any changes.  The recipes I’ve included are not intended as tube feeding formula replacements.

What if my kid is on tube feedings?
For kiddos who are on tube feedings, we make adjustments for growth a little bit differently.  Sometimes we will try new formulas to see if we can get a kiddo growing with a different mixture of fats or by giving different proteins.  Sometimes we’ll change the timing of feedings or give some feedings overnight while the kiddo is sleeping.  Sometimes we can add foods to tube feedings to help with weight gain, too.

Does my child need to take a multivitamin?
With a normal and varied diet, most kids probably don’t need to be on a special multivitamin, but it’s always a good idea to ask your child’s pediatrician about what may be best for your kiddo.  If needed, most physicians will suggest a once-a-day chewable vitamin or something similar.

I’m partial to vitamin products without a lot of sugar or extra filler ingredients.  I don’t usually recommend gummy vitamins for a few reasons (though we get asked often).

• Gummy vitamins can be a choking hazard because young children tend not to chew them very well.  
• They tend to stick in kiddos’ teeth and can cause dental problems.  Since we worry a lot about the mouth being a possible place where infections can start (especially for cardiac kiddos), we try not to encourage anything that can cause decay and other problems.
• Dosage recommendations for gummy vitamins are usually between two and six per day (depending upon the brand) and, truly, no one needs to eat candy as a daily supplement.
• They usually are not complete sources of vitamins and minerals.  Many of the powdered or chewable vitamins have better amounts of all of the micronutrients we’re looking for.

As the package says, always keep vitamins out of reach of small children; overdoses can be fatal.

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For my final National Nutrition Month post, I am going to include some information about nutrition following the Fontan operation, and I am putting together some suggestions for feeding older kiddos.  I have a couple of recipes that I’m excited to share for the whole family to enjoy!