Alex Tchouchev 9/16/13 Alex Tchouchev 9/16/13

Practitioner's Perspective: Family Centered Care

by Michael V. DiMaria, M.D.

Children's Hospital Colorado

Family centered rounds have been introduced in many children’s hospitals for several reasons, but one of the primary motives is that families like to be involved in the health care decisions of their children. Family centered rounds are also a manifestation of a change in the culture of medicine, which has occurred relatively quickly. The way we as physicians practice medicine has shifted from what was a more paternalistic model to a cooperative one; this is addressed very explicitly in medical school curricula: we are in the era of ‘patient autonomy In pediatrics this translates into ‘family autonomy.’ The consequence of the rapid change is that both health care provider and patients can be unfamiliar with the process, and unsure of how to make best use of this opportunity.

To understand what this means for families, let’s start by talking about what to expect on morning rounds. First thing in the morning, after the incoming team of providers has gotten up to speed on developments from the overnight shift, the group gathers at each patient’s bedside in turn. The goal will be to review the events of the last day, discuss how the patient is doing, and come up with the plan for the next day. This is an important time for everyone on the medical team and the family to get on the same page. Often times, especially at a teaching hospital, a large crowd will be present. In order to make things flow more quickly and easily, the attending may ask that any questions or concerns be raised at the end of the presentation; it is difficult for the team to stay focused and efficient if there are frequent side conversations.

Next, the players: the patient’s nurse will be at the bedside, advocating for the family, bringing up unresolved issues, and clarifying his role in the plan. A resident or fellow will ‘present’ the patient to the group, meaning that she will be responsible for knowing all the details about the patient and summarizing them efficiently to the group. To briefly explain how she came to be in this position, after graduating from medical school and receiving an M.D., she did a 1 year internship, then began a 2-5 year residency; after residency, she may do an additional 3-4 years of training, called a ‘fellowship’ to sub-specialize. After finishing all of her training, a doctor becomes an ‘attending physician’ – the person in charge of the team. The attending will be listening, teaching, and guiding the trainee through the process of assembling the data and figuring out what to do next. Various other people may be present, including pharmacists, nutritionists, nursing leadership, physical therapists, etc.

As alluded to above, rounds will consist of a brief description of the day’s events, a review of the physical exam, then a bunch of numbers (lab values, fluid intake and output, ventilator settings, etc.). At the end of all of this comes the assessment and plan. It goes without saying that during the assessment the presenter verbalizes their impression of how the patient is doing. The plan is usually presented in parts, according to ‘organ systems’ (all of the respiratory issues are grouped together, as are all of the cardiovascular problems, etc). This will sound something like, “From a respiratory standpoint, I think we can try to decrease the oxygen from 2 to 0.5 liters per minute. From a nutritional standpoint, I think that Sam can try to eat a solid diet today…” This will continue until all of the active medical issues have been addressed.

When patients and care providers first encounter family centered rounds, some may find it uncomfortable to have conversations about sensitive topics in the presence of a large group. Of course, there should always be the option for the family to have a more private conversation with only the essential members of the team, should there be concerns about privacy. From the resident’s perspective, my colleagues and I were initially very nervous about presenting a patient history and physical in front of the patient’s family as a resident. Aside from being a little shy, I think I was nervous that I would get something wrong and that the family would correct me in front of the boss. I quickly got over this fear, when it became obvious that the common goal was historical accuracy.

There are several points during the process when the family’s input will be especially helpful. It goes without saying that nobody knows a child better than the primary caregivers, and so who better to be the definitive source of historical information? Because team members may come and go twice a day (at the end of a 12 hour shift), none will have the perspective of the family, who will have been with the patient continuously. Being able to give the team an idea of the overall trend of the patient’s symptoms can be very helpful. Similarly, it can be difficult for people who don’t know the child to tell what sorts of behaviors are personality-related and which are indicators that things are not quite right.

The goal of this process is to get the patient home, feeling well, and able to participate in all of the things that go into being a healthy, happy kid. More often than not, this means that the family will need to continue some interventions in the home. So, part of having a child in the hospital is learning about the disease and the treatments. Being an informed caretaker will better enable the family members to identify when problems occur at home, and what to do about them. Some measure of our success as care providers is whether or not the family feels comfortable once they are discharged. Our hope is that the shared knowledge and unified goals of families and care providers results in a close working relationship that develops in this setting of family centered care.

Alex Tchouchev 4/1/13 Alex Tchouchev 4/1/13

Busy Kiddos and Busy Families

Nutrition Series

By: Emily LaRose, MS, RD, CNSC, CSP, Dietitian at Children's Hospital of Los Angeles

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:

Preheat the oven to 400 degrees.Line a baking tray with parchment paper or a silpat baking sheet.
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.
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.
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.
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.

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:

Preheat the oven to 400 degrees. Line a baking tray with parchment paper or a silpat baking sheet.
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.
Prepare the filling by mixing all of the ingredients together in a mixing bowl. Taste the filling and adjust the seasoning as desired.
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.
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.
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.

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!

Alex Tchouchev 4/1/13 Alex Tchouchev 4/1/13

The Growing (and Sometimes Picky) Toddler

Nutrition Series

By: Emily LaRose, MS, RD, CNSC, CSP, Dietitian at Children's Hospital of Los Angeles

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!

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) ToddlersFeeding 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.

Alex Tchouchev 3/18/13 Alex Tchouchev 3/18/13

The Cardiac Infant

Nutrition Series

By: Emily LaRose, MS, RD, CNSC, CSP, Dietitian at Children's Hospital of Los Angeles

We're continuing on with our Nutrition Series this week, with the help of resident expert Emily LaRose, dietitian at Children's Hospital Los Angeles. Today, Emily discusses the nutritional concerns of the cardiac infant into early toddlerhood. Thank you, Emily for continuing to share your knowledge and advice with our families!

I’m back for week two of the National Nutrition Month series! In this post, I’m very excited to write about what happens for baby’s nutrition once he is discharged home from the hospital the first time. This post will take us through starting solids and transitioning to cow’s milk. 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.

As I’d mentioned in my last post, nutrition and growth are both big parts of the interstage period. While we can establish a nutrition plan in the hospital, our plans may change once a baby has had some time at home so we’re always ready to make adjustments. Once babies are home, we rely on parents to tell us what is and isn’t working.

We focus a lot on growth and weight gain in the interstage period because babies who grow well tend to stay healthier, do better with their future surgeries, and have better overall development than those who haven’t grown as well. A good nutritional foundation helps with the body’s response to surgery and with healing afterward. Good nutrition also helps with immune function and brain development.

After the Glenn, weight gain and growth are generally less of a concern for a few reasons:
• Babies tend to gain weight a little more easily after then Glenn than in the interstage period.
• The blood flow to the baby’s belly is usually more stable so digestive problems are usually less of an issue.
• There isn’t as much focus on rapid growth because there usually isn’t another surgery planned for the near future (since the Fontan is usually many months away).

After the Glenn, we are still trying to get babies to grow (so we do usually continue with high calorie breastmilk or formula) but, in a lot of ways, post-Glenn nutrition becomes more like ‘typical’ baby nutrition. Babies progress toward taking solid foods, develop regular eating schedules, and eventually start taking cow’s milk just like other babies.

So going forward how much weight gain should we expect?
As I’d mentioned before, usually we say that weight gain of 20 to 30 grams per day (five to seven ounces per week) is normal for babies for the first three months or so. But, after the first few months, growth goals for the remainder of the first year are very individual for kiddos with HLHS.

There are standard growth goals, but if a baby gets a slower start, he may go through periods of faster growth (which we call ‘catch-up growth’). If a baby gets sick or spends some extra time in the hospital, she may grow a little more slowly for awhile before her weight gain picks up. Again, there is no set way that all kiddos grow, but sometimes averages can help us figure out how things are going.

For growth goals, the following will give you an idea of what would be average, but keep in mind that your kiddo may be growing on his or her own curve.
• 3 to 6 months: average weight gain may slow down a little to an average of about 18 grams per day (about four to six ounces per week). Length gains should be about 0.5 centimeters per week (or about an inch every five weeks).
• 6 to 12 months: weight gain slows down a little more to an average of about 12 grams per day (about three ounces per week). Length gains also slow down a little more to about 0.3 centimeters per week (or about an inch every seven or eight weeks).

Another good rule of thumb for weight gain is that a baby should double her birth weight by six months and triple it by one year. So if your little one was born at seven pounds, she should be about 14 pounds at six months, and about 21 pounds at her first birthday- if everything goes exactly according to plan.

When can I start giving my baby solids?
People ask about when to start babies on solids all the time… and, unfortunately, there are a lot of different answers. The American Academy of Pediatrics recommends solely breastfeeding for the first six months of age though multiple other sources suggest that between four and six months is a good age to start solid foods. Giving solid foods is not recommended for infants less than four months of age.

For an HLHS kiddo, cardiologists will often suggest that families wait to start a baby on solids after her Glenn but that isn’t always the rule. If you’re thinking that your little one may be ready to try some solid foods, talking to your baby’s cardiologist and pediatrician is a good idea.

The way the solids are introduced to an HLHS infant is just like a non-cardiac baby. Basically, we rely on the baby to tell us when he’s ready and we go from there. For more information, this website (http://www.healthychildren.org/English/ages-stages/baby/feeding-nutrition/Pages/default.aspx) was created by the American Academy of Pediatrics and is a great resource. They have covered everything from how to know if your baby is ready for solids, what kinds of foods are good to start with, how much to give, and much more. They have even included a sample menu that could be helpful for older babies.

A few things to remember:
• If your baby turns her head away and refuses to eat, don’t force her. It’s okay to wait to try solid foods another day.
• Your baby will learn to eat by watching other people eat. Include your baby in family meals and feed him when other people are eating.
• Babies are messy eaters, but that’s how they learn to eat. It is normal for meals to end up on the baby’s clothes, bib, and face.
• Your baby isn’t going to like all of the foods that you offer her but tastes change quickly so it’s okay to repeat a food a few days later. You may be surprised with what happens!
• We always want to make sure our cardiac babies are safe so if you notice that your baby is coughing, gagging, or choking with his feedings, check in with his medical team to make sure that you are okay to continue.
• If your baby has a feeding tube, he may be able to have some solids added to his feeding plan as well. Once he is at the right age and developmental level for solids, ask your dietitian, cardiologist, and/or pediatrician if this may be an option for your kiddo.

What about food allergies?
Allergies are an important subject since food allergies have become more common in recent years. No one knows what is leading to so many more cases of food allergy, but everything from household cleaners and antibiotics to environmental changes and genetically modified foods has been blamed. At this point, we just don’t know (and, in my opinion, there are probably many factors at play).

While the current American Academy of Pediatrics feeding guidelines don’t specifically address when to introduce allergenic foods to babies, some of the most current academic papers (including one published earlier this year in the Journal of Allergy & Clinical Immunology: In Practice) on prevention of food allergies suggest starting highly allergenic foods like soy, wheat, shellfish, and even tree nuts early on.

Recommendations are always changing so, again, this is something you will want to talk to your kiddo’s pediatrician about.

How do I transition my baby from a bottle-feeding schedule to a meal schedule?
As your baby grows, solid foods will play a larger and larger role in his nutrition plan; the goal remains to get the baby to grow as normally as possible. It’s important to remember that all babies and kiddos are different so allowing them to develop at their own pace is important.

Some babies wean themselves off of the bottle and transition to meals all by themselves. They can be so excited about meals that the bottles fall away and sippy cups of milk fill in where some of the bottles once were. Other kiddos demand a more gradual transition.

If you’re having trouble, I often suggest that parents write out the baby’s schedule (of meals and bottles). At around one year, she will probably need four or five meals per day (of solids) to keep her energy levels up and to keep her growing normally. If she is taking four or five bottles per day, but only taking solids two times per day, replacing once bottle at a time with a meal or snack is a good place to start if your medical team is okay with it.

A few other things that may help include the following:
• When you can, eat with her so that she knows that it is mealtime.
• It can help to offer solids first and then formula or milk so that she’s not too full for her ‘big girl’ meals.
• You can make a schedule change every few days (give or take) to get her onto her grown up schedule.
• We try to wean babies off of the bottle between 12 to 14 months so encouraging them to use a cup earlier on really helps (if they’re ready).

We see many picky eaters in the next stage of development. When kiddos aren’t growing well or when parents worry about whether or not kids are getting enough nutrition in, the question of supplmental drinks often arises. Stay tuned for my next post which focuses on feeding our picky cardiac toddlers.

Alex Tchouchev 3/11/13 Alex Tchouchev 3/11/13

The Cardiac Newborn

Nutrition Series

By: Emily LaRose, MS, RD, CNSC, CSP, Dietitian at Children's Hospital of Los Angeles

Nutrition and related weight gain are major issues for most of our HLHSers, and for cardiac babies in general. In recognition of Nutrition Month, we have an incredible nutrition series brought to you by Emily LaRose - dietitian at Children's Hospital Los Angeles. Emily's opening post provides a comprehensive look at several nutritional concerns and covers cardiac nutrition from birth to surgery and beyond. Thank you so much Emily for taking the time to provide our families such excellent analysis!

Emily is the dietitian in the Cardiothoracic Intensive Care Unit at Children’s Hospital Los Angeles where she works with the medical team and families to provide nutrition for kiddos before and after cardiac surgery.

Over my nearly 10 years as a registered dietitian, I have worked with children and adults of all ages. After completing the Neonatal Nutrition Fellowship at Texas Children’s Hospital in 2006, I knew that I was destined to focus on working with infants and young kiddos. I began in my current role in 2009 and, while I’ve seen a lot, I continue to learn from patients and families all the time. I am part of a great medical team, and I am in regular contact with colleagues from different hospitals across the country. Together, we can all work to understand how to help cardiac kiddos grow and thrive.

I have met so many wonderful families that serve as ongoing inspiration for the work our team does everyday. I am honored to share some of my professional experience with the Sisters by Heart community; I hope you find it helpful. 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.

Since I will be covering a variety of HLHS nutrition topics over the next couple of weeks, I thought that it would make sense to divide the postings by age: the cardiac newborn, infancy into toddler-hood, growing (and sometimes picky) toddlers, and busy school age kiddos. Happy National Nutrition Month!

The Cardiac Newborn

Usually when babies are admitted to our cardiac intensive care unit, I try to meet with parents to review how we give nutrition to these little ones before and after surgery. With moms who may still be in the birth hospital and dads who may be shuttling back and forth between hospitals and home, it can sometimes take a little while before we’re able to speak but, all the while, we’re getting nutrition into these little ones as best as we can.

In our first visit, I review how we give nutrition to cardiac babies, and I try to make sure that moms have the support they need to get pumping if they’re planning to feed the baby breastmilk when the time comes. Often we talk about the progression of nutrition from IV nutrition to oral feedings and everything that comes in between. I also talk a little about my role as the dietitian on our ICU team since a lot of people aren’t familiar with what a dietitian may do when kiddos aren’t eating.

I thought for this first post I would review some of the nutrition highlights for the cardiac newborn during his or her first hospitalization. A lot of this information comes directly from what I talk to new parents about so that they know what the nutrition plan is… and so that in the midst of everything going on with the baby, they know that we’re doing what we can to help the baby heal and grow.

The Nutrition Plan

Because blood flow to an HLHS baby’s intestines may not be stable or adequate, intravenous (IV) nutrition is often the first, and possibly only, source of nutrition for these little ones before surgery. You may hear this called parenteral nutrition (PN) or total parenteral nutrition (TPN); you may hear the word Intralipid as well. All of these descriptions are talking about the dextrose (sugar/carbohydrate), amino acids (protein), and fat (Intralipid) as well as vitamins, minerals, electrolytes, and other additives that can be given through a vein when feeding into a baby’s tummy isn’t possible.

We can actually get all of the nutrition that a baby needs into a tiny yellow bag and a little white syringe. It’s not a perfect system (we’d rather feed into baby’s tummy when we can), but it’s a lifesaver- literally.

Once deemed safe, many hospitals have feeding protocols that dictate how and when to start feeding into the baby’s tummy (while the IV nutrition continues). Most of the time, feedings are started through a small tube that is placed in the baby’s nose or mouth with a tip that sits either in the stomach or in the small intestine.

With the feeding tube in the stomach, feedings may be started continuously (given 24 hours per day) or as small volume bolus feedings every three hours or so- there is no real consensus on which way is better. With a feeding tube in baby’s intestine, feeds are given continuously. Eventually, these tube feedings are gradually increased (and the IV nutrition decreased) to meet the baby’s energy and protein needs.

Feeding progress is usually very slow because tummy problems can be common with HLHS. Babies may have slowed digestion after surgery or abnormal blood flow to their intestines. They may spit up, have bloody stools, or may be excessively fussy. While some of these problems may be unavoidable, studies have told us that if we have a gradual feeding plan that we stick with, we can avoid some of these symptoms and make faster progress in the long run. If we rush a baby to get more nutrition than he or she is ready for, sometimes we end up taking one step forward followed by many steps back.

So when we start feedings, what will we use?

Amy, Michelle, and Karen gave excellent perspectives on breastmilk and breastfeeding earlier this month. Breastmilk is so amazing and provides so many immune factors, micronutrients, special fats, healthy bacteria, and other benefits to these little ones. It is super easy to digest, and there are a number of studies out there that talk about how breastmilk can help to prevent some of the digestive problems that preemies and HLHS babies are known for. It’s truly customized nutrition that formula will never match!

For some moms, however, providing breastmilk may not be an option. Breast surgery, postnatal complications, certain medical conditions, some medications, and a variety of other factors may make breastfeeding difficult or impossible. Some moms choose not to breastfeed and that is okay, too.

Using donor breastmilk (from one of the nationally recognized milk banks) can be a good option for especially sensitive infants though it is rarely used long term. When breastmilk isn’t an option, there are plenty of formulas available for feeding infants with HLHS or for adding calories and protein to breastmilk (fortifying) when needed.

Some hospitals recommend standard formulas (like Enfamil Premium or Similac Advance) while others use semi-elemental or partially hydrolyzed formulas (like Pregestimil, Nutramigen, or Alimentum) in their feeding protocols. In some cases, even more broken down (elemental) formulas like Elecare or Neocate are needed. When we’re deciding which formula to use, blood flow to the baby’s belly, prematurity (and birth weight), GI problems or surgeries, and other medical conditions are all things we think about.

Are there cases where breastmilk or one of these formulas can’t be used?

As Michelle and Karen mentioned, chylothorax (or chylous effusion) can add an extra challenge when we’re talking about feeding babies with HLHS. Chylothorax can actually happen as a result of any surgery around the heart, and treatment almost always includes diet modification. The primary challenge is to find a way to get the long chain fat out of the baby’s diet while still getting him enough calories to grow. Unfortunately, long chain fat is the primary fat in breastmilk and infant formula.

IV nutrition is an option and may be used in some cases though, as I’ve mentioned, we try to feed into a baby’s tummy when we can. Skimmed breastmilk may be an option if enough fat can be removed; other formulas and special types of fat can then be added to the milk so that the infant has what she needs to grow.

If skimmed breastmilk isn’t an option, special formulas (like Enfaport, Monogen, and many others) can be used for oral or tube feedings until the drainage stops. Treatment usually continues for another two to 10 weeks until the cardiologist is confident that the area where the leak occurred is fully healed.

When can babies start to take feedings by mouth?

As babies recover, their tube feedings will increase and the breathing tube will come out. Once a baby is fully awake and his or her breathing is stable, we will start to think about letting the baby try some feedings by mouth- usually from a bottle.

Occupational therapists and speech language pathologists may evaluate if the baby is ready, able, and willing to take some nutrition by mouth. They will come up with treatment plans to help the baby progress to oral feeding as long as the baby is safe to do so. They observe babies as they eat and work with families to figure out how a baby is responding to feedings- is he sweating a lot, is her breathing rate increasing, is he working too hard, is she able to suck-swallow-breathe safely?

If a baby has a weak cry or is coughing or gagging with his feedings, swallow studies may be ordered to make sure that the breastmilk or formula isn’t going down the airway (aspiration). In some cases, positional feeding techniques are used to prevent aspiration. Sometimes feedings may be thickened (using baby cereal or other thickeners) if the baby is aspirating with thin liquids. For some infants, aspiration makes feeding by mouth unsafe and long-term tube feedings are needed.

With practice, the hope is that the baby will begin to take more and more nutrition by mouth relying less on the feeding tube. For some babies, eating causes a lot of stress so they may be limited to oral feeding a couple of times per day or for a small amount of time per feeding until they get stronger.

Once the team is confident that the baby is able to eat enough to stay hydrated, we will start talking about taking the feeding tube out. Some babies learn to take all of their feedings by mouth within a couple of weeks and others take much longer. Unfortunately, we don’t have great ways to predict who will eat well and who will not. When a baby can’t eat enough by mouth, but is otherwise ready for discharge, the team may recommend that he go home with full or partial tube feedings.

So how much nutrition do cardiac babies really need?

We have all sorts of ways that we can estimate how much nutrition someone may need- from babies and toddlers to older kids and adults. There are standard calorie levels for term babies without medical conditions as well as standards for premature babies. All babies are different and what works for one may not work for another. Ultimately, for HLHS babies, we rely on four things to give us hints about what a baby’s nutrition needs may be: research, previous experience, healing, and growth.

Research tells us that right after cardiac surgery babies have reduced calorie needs. The physical stress that their little bodies go through causes their metabolism to hibernate (sort of) for a week or so. After they recover, their nutrition needs increase, and, if they’ve been on bypass, they increase a lot.

Most research suggests that infants with HLHS often require upwards of 10 to 30% more than other term infants though there are infants who grow well on far less than we’d expect (and some who require even more). Energy needs depend upon how well the baby is able to eat, if he or she is able to absorb the nutrition their being given, how hard he or she is working to breathe, any other medical conditions, and much more.

We think of breastmilk as having about 20 calories per ounce on average though there can be a lot of variability. Standard formula dilution, with a few exceptions, is also 20 calories per ounce. For our HLHS babies, we usually find that breastmilk and formula needs to be mixed to at least 24 calories per ounce for babies to grow- but not always. Sometimes we will increase calories even further to 27 or even 30 calories per ounce to get babies to grow.

In addition to some of the formulas I’d mentioned, hind milk feedings, skimmed fat (from mom’s breastmilk), other protein, fat, and carbohydrate additives may be used to change the nutrition profile or increase the calories in breastmilk or formula.

Ultimately, the baby will tell us how much nutrition he or she needs to grow and thrive. All babies are a little different and, like medicine, nutrition isn’t an exact science.

What is normal growth for an HLHS baby?

Weight loss just after birth is normal for all babies. Usually, up to about 10% is expected with the goal of baby regaining his or her birth weight by two weeks of age. But what is normal for a baby who has had surgery or who has relied on nutrition support? It’s tough to say and can vary greatly.

Often, when we’re talking about weight gain for a newborn baby, we’re looking for about 20 to 30 grams per day (or about five to seven ounces per week) after the first two weeks of life. We’re also expecting newborns to grow in length by 1.5 to 2.5 centimeters (1/2 to 1 inch) per month. Again, these are general goals for all newborn babies; more weight growth may be normal for some babies, less may be normal for others, it depends.

Another consideration is to look at how proportionate a baby is using weight-for-length growth standards (charts). If a baby is gaining weight well but is not growing longer, he may appear chubbier than other babies his age. If a baby is gaining weight normally but is growing in length faster than most babies, she may appear thin. Despite the average standards we use, gaining 15 grams a day may be normal for some babies while gaining 40 grams a day may be ideal for others.

If an infant is getting enough nutrition, in theory these growth goals should be possible. Unfortunately, that still doesn’t mean that growth is easy or the same for all babies. Getting enough nutrition to show good growth before it’s time for another surgery is vital, and I know that HLHS babies (and parents) work really hard for every ounce.

Things to think about

1. If you want to breastfeed, start pumping early on to establish your milk supply and continue pumping 8-10 times each day. Babies usually eat every 2 to 3 hours so pumping on a similar schedule will remind your body to keep making milk even if you baby isn’t feeding just yet. Breastmilk can be frozen for about 6 months in a regular freezer but make sure to date it so you are sure to use the older milk first.
2. Right after birth through about a week or two after surgery, a cardiac baby’s weights often do crazy things. We see weight loss in the beginning, a lot of weight gain with fluids, weight loss again… it’s a rollercoaster! A couple of weeks after surgery is usually a good time to start looking at what your baby’s weight is doing. He or she may not be gaining weight by leaps and bounds, but the average trend should be positive.

3. Be patient. Even if everything goes perfectly, it takes awhile for an HLHS baby to get to full feedings (by tube or by mouth); if we rush the process, we often have to backtrack. Keep in mind that when babies are born, it takes time for them to learn to eat. HLHS babies have some extra challenges including higher nutrition needs, different breathing requirements, a heart that’s working with fewer parts, digestive problems, recent surgery, etc.

4. A weight gain goal of 20 to 30 grams per day is a guideline but may not be the right amount of weight gain for all babies. Looking at weight for length on growth charts can be a really helpful way to make sure that a baby is gaining weight proportionately over time. Your pediatrician (or dietitian) has these growth charts if you want to see them.

5. All babies are different and it’s always okay to ask questions! If you haven’t met a dietitian and would like to- just ask! If you have questions about your baby’s nutrition or other medical conditions- just ask! We’re all here to help.

Alex Tchouchev 3/7/13 Alex Tchouchev 3/7/13

Breastfeeding the HLHS Baby - the Practitioner Perspective

Nutrition Series

Michelle Steltzer, CPNP-AC, Cardiovascular Program Nurse Practitioner

On Monday, one our Sisters by Heart moms, Amy, shared the parent perspective on the question of whether it’s possible to breastfeed an HLHS baby. Today, we are fortunate enough to have two seasoned practitioners from Boston Children’s Hospital provide their perspective on breastfeeding an HLHS baby!

Michelle Steltzer, CPNP-AC
Cardiovascular Program Nurse Practitioner
Michelle is currently working on publishing a case study on a breastfeeding HLHSer who transitioned to fully breastfeeding during the interstage period with excellent growth.

It is an honor to share my perspective with Sisters by Heart and I truly appreciate all the work that you do each day to reach out, connect, and support families with HLHS. As mentioned, the congenital heart disease population is near and dear to my heart having worked many years as a bedside nurse in the ICU and in 1999 as a cardiology nurse practitioner in the ICU/ward at Children's Hospital of Wisconsin/Medical College of Wisconsin (1993-2007). I transitioned to a cardiovascular surgery nurse practitioner on the ward at Boston Children’s Hospital 5 years ago. Through the years, I have written a lot about nutrition, spoken at national and local conferences, and gained much experiential practical knowledge at the bedside with amazing insight provided by great patients and families like you folks struggling with feeding, growth, and nutrition. I am happy to share my perspective with you and trust you find it useful.

On a daily basis, I am inspired by the dedication and passion of so many families that ensure the benefits of breast milk are available for their infant via breast feeding, expressed breast milk by bottle, and/ or other tube feedings. As a mother of two children that breastfed both infants until going back to work, it is no simple request for any parent. Breastfeeding is a lot of hard work and requires much dedication and support by the entire family to ensure success. Currently, as Amy mentioned, I am working on writing up a case study that will give a detailed description of one mom’s successful transition to breastfeeding during the interstage period. To give you perspective, I walked to the patient’s bedside following morning rounds report by my NP colleagues after not seeing this particular infant since the initial newborn surgical hospital stay. Upon seeing the infant, I promptly walked out of the room thinking to myself, “This patient cannot possibly be the patient advertised during sign out by my peers that recently had a Glenn surgery. I must be in the wrong patient room.” Needless to say, I was completely wrong in my presumption and will share more details in a journal publication in the future about this practice changing experience.

One key to success, particularly in the CHD population, is reaching out and truly engaging all members involved in your infant’s care team that is rallying for successful growth and nutrition. This includes: first and foremost the family, pediatrician, referring and primary cardiologist, hospital teams (prenatally, postnatally in CICU, floor wards, and follow-up clinic visits), early intervention, speech/feeding therapy, and cardiac developmental centers available at your institution/region. These team players (from nursing, lactation, nutrition, MD, therapists, etc) along with family dedication are essential to ongoing success with breastfeeding for this high risk and fragile population - particularly during the interstage period. This period is often described as a very isolating experience for the family, particularly for a dedicated breastfeeding mother. Thoughtful discussions with mothers and families throughout all care opportunities with health care providers are critical to ensure the best outcome for the infant and family.

As Amy mentioned, breastfeeding and oral feeding in general is a lot of work and a "stress test,” particularly for infants with HLHS. Realizing this at baseline is important because there can be additional complicating morbidity factors that may impact the stress of feeding. Some of these concerns are: poor ventricular function, valve regurgitation, breathing fast due to too much blood flow or other respiratory concerns, vocal cord injury, oral aversion, reflux, other non-cardiac anomalies, and other morbidity factors that may contribute to an infant's failure to thrive and grow. Having said that, these factors should not limit the decision to utilize breast milk and all its beneficial immune properties.

Discussions with health care providers about breastfeeding and utilizing your precious breast milk is essential. It is also important to note, that there are some special cases such as chylous effusion (milky appearing fluid accumulating or draining around the lungs), milk protein allergy, or guiac positive (bloody) stools that may require alternative supports for nutrition. In these instances, a conversation about alternative options and adjustment in the breast milk diet may need to occur in the short term period.

Practical 5 Pearls of Wisdom to Share with Moms Interested in Breastfeeding
1. Discuss prenatally and postnatally your thoughts on breastfeeding. On a daily basis bring up your desire to encourage breastfeeding and connect with all your lactation resources early.

2. Keep your breast milk supply up drinking proper fluids and frequent pumping at least every 3 hours. If concerned, please reach out to your lactation consultant early. This way you will have plenty of that nutrient rich milk with all its beneficial immune properties when your baby is ready. *Please see below our lactation consultant expert from Boston Children’s Hospital, Karen Sussman-Karten’s input for other pearls of wisdom on breast milk supply and “lactoengineering.”

3. Practice patience and persistence. Never miss an opportunity to practice. Try to breastfeed or even just work on non-nutritive suck if your team agrees during the inpatient stay (preoperatively if possible) and outpatient. In some cases, you may need to be persistent in your requests to try breastfeeding, but don't be shy in speaking up for your baby. Once your child is on bolus feedings, there are at least 8 feeds at least in a day and thus 8 times to practice daily with the health care team and ultimately the primary feeders of the infant after discharge.

4. Advocate and utilize the resources available to you in the home surveillance monitoring program (saturations, heart rate, daily weights, and logging the number, volume, and length of feeds-particularly if breastfeeding).

It continues to be an issue among some institutions that insurances will not cover scales. Advocate early with your primary team, ask for scales that weigh to at least 10grams (there are many on the market), and if possible consider scales that weigh to <10 grams.
Communicate honestly with your providers about how the breastfeeding and growth is progressing. It is important to share with your providers if you are noticing fatigue, sweating or diaphoresis during feedings because these may be a sign that your baby is working too hard to feed to adequately grow and thrive.
Avoid feeding (by bottle or breast) longer than 20-30 minutes to minimize losing more calories during the feeding process than actually gaining. There are some weeks where you may need to add more bottle feeds due to your family circumstances or or infant’s illness. Make sure to pay particularly close attention to your baby’s progress with your home scale. These periods may warrant more detailed intake and should not be thought of as a failure to breastfeed successfully.
Remember the nature of shunt dependent blood flow in HLHS heightens your infant’s vulnerability during the interstage period, and this is the primary reason why home surveillance monitoring was introduced over a decade ago. In some cases, your infant may require to be seen by your local providers (cardiology or pediatrician) or visit the emergency room for reassessment of plan of care. Some instances may require readmission for closer monitoring of feeding and cardiovascular status. This is by no means a failure on your part, but the “nature of the disease process of HLHS.”

5. Be practical with your expectations. Don't expect your baby to fully breastfeed by the time of first discharge following stage 1 palliation (whether it is Norwood with BT shunt, Sano with right ventricular to pulmonary artery homograft, or Hybrid). Lastly, please remember that you are not alone, take care of yourself, and never give up!

Karen Sussman-Karten, RN, IBCLC
Karen is a Lactation Consultant in the Lactation Support Program at Boston Children’s Hospital and is currently the Board Chair of the Mother’s Milk Bank of New England.

Amy and Michelle have shared so much valuable wisdom about breastfeeding and providing breastmilk for CHD babies. I have been a lactation consultant at Boston Children’s Hospital since 2006 and I have a few more thoughts for you.

Having adequate milk production is the foundation for success. Without it your options are limited. Since your baby will probably not be able to breastfeed in the first few days, expressing milk is essential to establish milk production. It’s important to start as soon after delivery as possible. Pumping frequently, every 2-4 hours is recommended. You may be able to collect more milk with manual expression in those early days. “Hands on pumping,” massaging and compressing while using a breast pump, can also result in collecting more milk.

Think of your early breastfeeding attempts as practice sessions. Don’t expect your baby to drink large volumes at the breast initially. Try not to get discouraged; practicing will lead to improvement over time and the skin to skin contact can help with milk production and breastfeeding.

Once your baby seems to be drinking at the breast, doing a pre and post feed weight to measure intake can be helpful, particularly in the hospital when you have access to use a very accurate scale for pre and post weights. As mentioned by Amy, our parent expert, most baby scales intended for daily weight checks are not sensitive enough to weigh less than 10 grams. Of course purchasing an accurate scale can be costly. You may want to consider renting one like the Medela baby weigh scale for home based on your infant’s progression with breastfeeding. It’s very important to keep your baby in the same clothing and diaper for the pre and post weight. Changing the diaper or weighing your baby naked will not give accurate results.

“Lactoengineering” refers to ways of altering the breast milk or breastfeeding to meet your CHD baby’s specific needs. Since getting the most calories is a major concern, there are some techniques you can use to increase caloric intake. The caloric content of your breast milk can be tested using a creamatocrit machine or milk analyzer. Some hospitals have this equipment. The assumption is that breast milk has 20 calories per ounce but when tested it is often higher. This becomes important if your infant’s EBM is being fortified above 20 calories per ounce, potentially up to 26 or 28 or more calories per ounce. Some infants do not tolerate the additives for a higher calorie diet so it can be very helpful to know the general caloric density of your breast milk as a baseline. Sometimes the additives can be reduced or eliminated depending on the results. Beware, the fat content of your milk varies throughout the day so testing once is like a snapshot of the calories per ounce.

Another interesting phenomenon is that the fat content of your milk increases toward the end of a nursing or pumping session. If you make more milk than your baby drinks, you can use more of the fat rich “hindmilk” to increase the calories. You can pump for the first 3 minutes and freeze that “foremilk” for later use. Then either nurse your baby or pump the remainder of the “hindmilk” and use only that.

If your baby has a chylous effusion, they cannot tolerate the fat portion (long chain fatty acids) in breast milk. It is possible to separate the fat from your milk and use the “skimmed” breastmilk. This can be done with a centrifuge machine or with other methods of allowing the milk to separate and removing the cream layer. This “skimmed” breast milk will need to have other oils and nutrients added to make up for the calories lost by removing the cream. This allows your baby to continue receiving your milk rather than a special formula while they have a chylous effusion.

Thank you so much, Michelle and Karen for your helpful insights into breastfeeding a child with a complex congenital heart defect like HLHS!

Stay tuned for next week’s post in our nutrition series, “The Cardiac Newborn!”

Alex Tchouchev 3/7/13 Alex Tchouchev 3/7/13

Breastfeeding the HLHS Baby - the Practitioner Perspective

Nutrition Series

By: Michelle Steltzer, CPNP-AC, Cardiovascular Program Nurse Practitioner

It continues to be an issue among some institutions that insurances will not cover scales. Advocate early with your primary team, ask for scales that weigh to at least 10grams (there are many on the market), and if possible consider scales that weigh to <10 grams.
Communicate honestly with your providers about how the breastfeeding and growth is progressing. It is important to share with your providers if you are noticing fatigue, sweating or diaphoresis during feedings because these may be a sign that your baby is working too hard to feed to adequately grow and thrive.
Avoid feeding (by bottle or breast) longer than 20-30 minutes to minimize losing more calories during the feeding process than actually gaining. There are some weeks where you may need to add more bottle feeds due to your family circumstances or or infant’s illness. Make sure to pay particularly close attention to your baby’s progress with your home scale. These periods may warrant more detailed intake and should not be thought of as a failure to breastfeed successfully.
Remember the nature of shunt dependent blood flow in HLHS heightens your infant’s vulnerability during the interstage period, and this is the primary reason why home surveillance monitoring was introduced over a decade ago. In some cases, your infant may require to be seen by your local providers (cardiology or pediatrician) or visit the emergency room for reassessment of plan of care. Some instances may require readmission for closer monitoring of feeding and cardiovascular status. This is by no means a failure on your part, but the “nature of the disease process of HLHS.”

Thank you so much, Michelle and Karen for your helpful insights into breastfeeding a child with a complex congenital heart defect like HLHS!

Stay tuned for next week’s post in our nutrition series, “The Cardiac Newborn!”

Alex Tchouchev 3/4/13 Alex Tchouchev 3/4/13

Breastfeeding the HLHS Baby - the Parent Perspective

Nutrition Series

By: Amy Bennet, Parent

March is Nutrition month! In honor of Nutrition month, we’ve created a special blog series on nutrition. We’re kicking off the month with a post on breastfeeding, written by one of our own Sisters by Heart moms, Amy, mom to Bodie. We will follow it with a series on nutrition issues faced by our HLHSers, all provided by Emily LaRose, Dietitian at Children’s Hospital of Los Angeles. Without further adieu, Happy Nutrition Month – and happy breastfeeding!

“Will I be able to breastfeed my baby?” This question gets asked SO often, and the answer is not terribly straightforward. I wanted to take a few moments to answer this question from the perspective of a mom who’s been there and wondered the exact same thing.

I should mention that I’m a huge fan of breastfeeding. I breastfed my heart-healthy (now 5-year old) daughter until she self-weaned right around her 2nd birthday. So, breastfeeding is important to me. It was something I desperately wanted to do with my HLHSer, but, for a myriad of reasons, was unable to. I ultimately pumped for him for 10 months and had enough breast milk to last him until 15 months of age. For most HLHSers, breastfeeding, at least exclusively, simply isn’t feasible. There are a lot of factors working against breastfeeding our special kiddos. The rare mom who is able to exclusively breastfeed is a bit like an exotic animal observed in the wild, while the rest of us stare and whisper in awe. BUT it is possible for some mothers, and partially breastfeeding is possible for many more. If breastfeeding is important to you, by all means, try to make it work! Here are some things to keep in mind:

Monitoring
Many hospitals follow an interstage monitoring program, which requires parents to track specific data points (i.e. oxygen saturations, heart rate, weight, intake). Thus far, monitoring programs are reducing interstage mortality. Feedings are tracked closely interstage, since even slowing down slightly during feeds raises a red flag for practitioners. The ability to monitor the exact amount of “ins” for your baby is crucial – an easy task when armed with a bottle, but obviously more difficult with breastfeeding. For this reason, some hospitals discourage breastfeeding. Some doctors are uncomfortable with how difficult it is to measure feeds done via breastfeeding. But it’s not impossible! You can overcome this obstacle if your insurance approves a scale, by purchasing a baby scale, or renting one yourself weighing your baby before and after each feed to calculate the exact amount of breast milk taken. It’s more challenging, but definitely not impossible. There are some scales that weigh to smaller increments, but are also much more costly. Finding one that weighs to 10 grams is often reasonable enough for most families to track the daily weights.

Weight gain and cardiac function
This is probably the biggest obstacle to exclusively breastfeeding an HLHS baby. One of your primary goals interstage is to grow your HLHSer big enough to be ready for his or her second stage surgery, either the Glenn or the Hemi-Fontan. Many interstage HLHSers struggle with growth because their hearts are working so hard. It’s very common for interstage babies to receive supplemented formula or breast milk for higher caloric concentration. In my case, I pumped, and my son was not able to gain weight on the calories in my breast milk alone, so my pumped milk was fortified with a high calorie formula. If your baby cannot gain weight on the calories in breast milk alone and fortification is necessary, exclusive breastfeeding simply may not be a possibility, at least until after the second stage surgery when growth is typically less of an issue. But, that doesn’t mean you can’t breastfeed at all. I do know a number of HLHS mothers who’ve breastfed a few times a day and fed with fortified formula for the remainder of their feeds. If this is the only thing stopping you, definitely check with your cardiologist to see whether this might be a possibility.

Related to weight gain, it takes a lot of work to eat, whether by breast or bottle. For some babies, particularly those whose cardiac function is depressed, it can be really hard to gain enough weight on oral feeding, even if it’s supplemented, because their hearts are simply working too hard. For these babies, tube feeds are necessary to allow the baby to grow without having to work for it. But again, that doesn’t mean you can’t pump breast milk and tube feed your baby, so that they can still get the immune boosting benefits of breast milk.

Swallowing
Another thing that can sometimes play a major role in whether or not you’ll be able to feed is whether your baby has any swallowing issues. In my son’s case, his left vocal cord was paralyzed during his Norwood (not an uncommon complication following open heart surgery where work is done on the aorta, as the nerve controlling the vocal cords run alongside the aorta – due to the extensive amount of aortic reconstruction during the Norwood, this complication is seen). Vocal cords are what protect the baby’s airway. For a baby with vocal cord paresis, the paralyzed vocal cord lacks the ability to adequately protect the airway and, depending on the severity of the paralysis, oral feeds may need to be thickened using a thickening agent or avoided altogether. In either case, although breastfeeding is not safe for the baby until either the affected cord heals or the remaining cord compensates, you can still pump breast milk and feed it to your baby via bottle or feeding tube.

Feeding Difficulties
Many of our HLHSers have difficulties with feeding in general. Often, these difficulties come in the form of oral aversions, or difficulty coordinating sucking, swallowing and breathing simultaneously. There are many factors that can cause this. For babies at institutions that do not allow oral feeds prior to the Norwood, sometimes, by the time the baby has had surgery, been extubated and finally given a chance to take a bottle or breastfeed, the newborn’s sucking reflex is gone and they quite literally do not know what to do with a bottle or breast. Or they can suck, but can’t quite coordinate their swallowing and breathing effectively. For others, particularly those on the ventilator for prolonged periods of time, they may associate things being in their mouth with discomfort and pain, and oral feeds are quite challenging. In both of these cases, breastfeeding is unlikely; however, there are a few things you can do to try to work through this and enable your baby to take a bottle of pumped breast milk.

In Sisters by Heart care packages, we include newborn pacifiers, and encourage parents to use them with their newborn prior to surgery and until the baby is permitted to attempt oral feeds. While it will not guarantee a baby will retain that sucking reflex, it can help keep the baby in touch with that sucking reflex. You can also ask your medical team to intubate through the nose, rather than the mouth, so that the baby can take a pacifier even while intubated. (Some, but not all, institutions can comply with the request, depending on your child’s situation.) And, definitely, seek out occupational therapy, lactation specialists and feeding therapist as soon as possible at your surgical center because they are often very practical at providing a lot of strategies to encourage oral feeding and breastfeeding.

As you can see, the question of whether or not you’ll be able to breastfeed your HLHSer, or any complex CHDer for that matter, can be a loaded one, dependent on a lot of factors. Yes, the odds are stacked against you being able to exclusively breastfeed, but that doesn’t mean it can’t happen; many mothers are able to pump and alternate breastfeeds with bottle feeds. If this is something that’s important to you, then push for it. Let your medical team know upfront that you intend to breastfeed (I told my entire medical team while I was still pregnant, in fact!).

And if breastfeeding simply isn’t an option for any of the reasons mentioned above, pumping is almost always an option – so, to those of you moms who fall into this category, I say pump, pump and pump away!!! The benefits of breast milk are huge, regardless of the source: breast, bottle or feeding tube. It’s not easy to pump exclusively, but take it from someone who’s been there, in your shoes – it is absolutely worth it! Do what you can to keep your supply up and pump as long as you can – whether it’s 1 day, 1 week or 1 year, your CHDer will receive benefits!

Many hospitals have resources dedicated to lactation support for cardiac patients, so make sure to ask! For instance, Children’s Hospital of Philadelphia provides a lot of great information on breastfeeding a cardiac patient here!

Another hospital currently focusing on lactation support for cardiac patients is Boston Children’s Hospital. Stay tuned for Thursday’s post, where two practitioners from BCH share their input on this important topic!

Thank you, Amy, for sharing your insights with us!

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