Very very busy!
But you just want to hear about Ivy and I can't wait to tell you!
She is thriving and doing sensational!
And yet there is a lot going on with her feeds that have me drowning!
Ivy began eating the day of discharge and clearly shows that she wants to eat and drink.
However she has the NG tube due to the fact that she can not swallow any fluids due to the damage from the ventilator and she needs at least a month for that to heal. She also can not have any fats due to the chylothorax that occurred with her diaphragm plication and pacemaker placement. The fat restriction will continue until the cardiologist tells us so and who knows when that will be?
So with such restrictions, it would be very difficult to get 1066 calories a day in our little peanut. Even when eating, that is a huge number on such a restricted diet.
So the plan when we left PCH, since they wanted to encourage her to eat real food, was to leave her on night feeds and give her real food during the day. What she gets at night is super high calorie (fat free) baby formula.
Well, she has been throwing the formula up. And by Thursday morning I was crying in frustration because I can not tell if she is throwing up her medicines too. Thursday morning she woke throwing up, her feeding tube was clogged and her meds were not going to go through, it was terrible! So I pulled her tube out and gave her a bath and decided to see how breakfast went with no tube in her throat. I figured if there was a difference in the way she ate, I would just re insert her tube every evening when it was time to start her feeds and then take it out again every morning. Well it certainly made a difference. She was so much better able to swallow and gulped down lots of cold yogurt and tofu. Then it hit me! Her meds..... Duh?? How would I get her many many syringes of medicine in her little body throughout the day? She can't have liquid? She will aspirate..
Well, I used her thickener and thickened her medicines, put them in a big syringe, dipped the syringe in water followed by a bowl of sugar. I let Ivy hold the syringe and stir the sugar with it. I showed her how yummy it tasted and when she put it in her mouth to taste it I shot the gel turned medicine far in to her mouth. WE DID IT!!! She did not like the taste and the gag reflux kicked in but the interesting sugar bowl in her hands helped to keep her from throwing them up and WE DID IT!!! So that is how we got through the rest of the day. But all we did ALL DAY, was feed and take medicine. Really, thats all we can do when you need that many calories...
At 2:30 Ivy saw her pediatrician. My doctor at Phoenix Childrens recommended this doctor as the best in the valley and she happens to be located in my city! We decided to change our kids over to her office and OH MY WORD am I ever glad we did!! She is a treasure!!! We just could not be more happy with her! And she told us that Ivy looks amazing!!! I was so worried! I really was so stressed out. I was terrified she had been throwing up her meds, I was concerned that her energy level is nothing like what we all had pictured it would be when we came home and her incision looked a little red and puffy at the very top, and most of all, this throwing up...... well it had me really scared!
But..... the doctor said, after what she has been through, and how short of time it has been, She looks absolutely fantastic!! She said her incision looks excellent. She said she was absolutely amazed by how fantastic she looked after what she has overcome!
Wow!! Huge sigh of relief!!
And then.... she recommended we keep Ivy off the feeding tube until next Wednesday. At that time we will follow up with her and get a weight. Of course if things are not going well, we will see her sooner. But for now, we feed feed feed and we return in a week to see if she is gaining weight. Ummmmm can I just tell you how much pressure this is? But in a good way too. Ivy needs us to do this for her, and do this we will!!!! We did not meet our calorie goal yesterday. I am hoping to do better today, yesterday we did not have the whole day to count since we did not see the doctor until late afternoon. Today will be a better day.... I hope. And if it is not, I am capable of popping that tube back in her at any time. I just can't be guaranteed that she will not throw the formula up at night so it is not a for sure calorie adder. (is that even a word?)
Updated~
Like I said, things are busy. Before I could even hit post this morning the littles woke up and here it is 2:40 and I am back to try again. I wanted to add that at the time that Ivy went down for her nap we were at 380 calories. We get the bulk of our calories from Gogurts. They are only 2 ounces and 70 calories!! She can't have drinks so these help her thirst as well. I can usually get 5 in her a day! But.... her little tummy throws up easy and she tires very quickly. And her throat hurts, so most foods without fat are tough for her to swallow. sigh..... 5 yogurts makes 350 calories, sounds like a lot but its less than 1/3 of our goal. All tricks and suggestions are greatly appreciated here!! Please post a comment! I need you!! And remember, no more than 1g fat per serving and it can not be a liquid. Honey is the thinnest texture she can have.
As for home life...
SWEET SWEET SWEET!!
The girls are doing perfect in the same room! Lexi is the whole reason we get Ivy to eat! If she takes a bite then Ivy wants a bite. Everything has to be just like Lexi, it is sooooo completely sweet!!
They are cute cute cute together. Every day they become a little more ~sisterly~ :) Ivy's energy level is still pretty low. She tires easily and she mostly just sits. I thought there was reason to be concerned about that but our pediatrician reminded me that she was in heart failure for 2 years, it is more than just her heart that is recovering, it is her whole body. She will gain it little by little especially as she heals and eats more. I don't know why I expected her to be running in circles after all she has been through... I just needed to hear that she is ok :) She is amazing. The stress I have to put her through all day with her foods and meds, really just amazes me with her peaceful disposition and huge smiles. She is saying so many words and new sounds and can feed herself like a big girl when the little peanut was just barely introduced to silverware!
Enough words.........
This is Love.
This is Hope.
This is Faith.
This is Joy.
This is Happiness.
This is Family.
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47 comments:
So glad you guys are HOME! And she really does look great! She is a stunner that Ivy Joy, just like her sister. They are so sweet together.
Daisy
PS: With all this stress and anxiety make sure you rest too, Mary.
Oh I so love seeing these sisters together. I CANNOT imagine the stress of getting calories into Ivy. I don't think stress is a strong enough word:) So glad you all are getting settled in!!
I haven't posted any comments, but I have been following your entire journey with Ivy and praying constantly. I can only imagine that one of the most difficult parts of this journey is now that you are home and all of Ivy's care is on your shoulders during the day.
I just wanted to tell you that you're whole family is in my prayers, whenever I think of little Ivy, I stop and pray. In the morning, in the evening, at odd intervils during the day. I just know that God is with you and he is going to continue to heal her little by little every day.
Meg
So glad to hear your little angel is home and it getting better. Have you thought about contacting a dietician for some hints about what you can feed her that is high in calories yet low in fat?
Mary-
You may have already posted this somewhere and I have probably even read it :) but-just in case-when my son was discharged and we needed to add a bunch of calories there was a powder we used to sprinkle in his yogurt that the doctors prescribed that upped the calories and really helped out. I can't believe I can't remember the name of it! Eight years ago I would have laughed if you told me I would ever ever forget the name of it! :) I remember being so concerned about getting all of his calories in and praying for God to help it happen! I am so glad she is home. I have to agree with her pediatrician! She looks amazing and beautiful! :) Hope you and your family have a wonderful weekend! Angela from FL
So happy to read your update!! I bet that you are a very busy mama-- Lexi is such a sweet big sister and Ivy wants to be like her-- such beautiful pictures of these 2 cuties!!! love tho white dresses and the color on Ivy by herself-- I sent a package for Ivy ,but to the hospital probably got there after you left- can you let me know if you get it? Continued prayer for Ivy Joy and all of you !! Cathy in Illinois
AWESOME, SUCH GOOD NEWS......GYLL
I have had my entire school praying for little miss Ivy. They are all thrilled to hear she is doing well and are very surprised at how young she is and how many things she has gone through. PRAISE THE LORD she is doing well!
I would also like to add that she and Lexi look so so SO much alike it is crazy!! :)
Have fun and VERY THANKFUL that Ivy is home and doing well.
Wow- she is such a gorgeous girl- it is amazing how good she looks after all she has been through! What about lowfat puddings? Or a custard made with low fat milk (I would use evaporated skim milk) and eggbeaters? Continuing to pray for you guys.
here's a recipe for a sweet potato custard that might work- http://www.tititudorancea.com/z/recipes_sweet_potato_custard.htm
Could there be anything more beautiful?! Love it!
Mary...she looks wonderful...you are such a good Mama!! Thank you so much for taking time to post these. It warms our hearts!!!
Kathie
Spiru- tein is a powder you can add to things. Different powder flavors have different amounts of fat and calories.
Polycose is the name of the powder you want to get for Ivy...
Hi - Applesauce? fat free puddings, custard? Babyfood? Carrots, etc? soft boiled egg? smashed banana? Jam? Not sure how much fat it has but nutella?
Kefir?
Wonderful!!!
Monica, from Canada :-)
What about a THICK, smoothie with some fruit juice mixed in? Fruit juices contain high calories and low in fat. I know she has a hard time drinking but if the smoothie were thick enough to spoon it would be like yogurt. in 1 cup of Kidney beans there are 225 calories and 1g of fat. In 1 cup of green peas there are 120 calories and 1g of fat. A baked potato with the skin contains 228 calories and zero fat. Rice krispies, and cream of wheat both contain zero fat, http://www.freedieting.com/tools/calories_in_fruit.htm here is a list of fruits and their fat content and calorie content. Applesauce if it is unsweetened has zero fat. Lots of fruits have zero fat. A LOT of vegetables have zero fat.
http://averycan.blogspot.com/ here is a list of vegetables that contain the fat and calorie content.
Long grain white rice is high in calories. 1 cup has about 200 calories and 0 fat.
Hopefully this list helps you. If you could post a quick blog about teh things Ivy cannot have, I think that would help myself and possibly others find things that you could give little miss Ivy. Keep up the amazing work of taking care of Ivy. Remember to take care of yourself as well!
Natalie, from MN
Hi Mary. I don't know if this might work, but maybe you could add corn syrup (it's thick, high in calories and has no fat) to yogurt, and if it's too sweet, maybe you could add it to plain yogurt. There are also fat free puddings, and maybe mashed banana (if it doesn't have too much fat) blended together with honey or honey and yogurt in a blender might work too. Maybe also baby rice cereal or baby oatmeal (if the fat is low enough) with honey or applesauce or sugar water. Also, any fruit can be pureed and thicken it with honey or yogurt or tapioca, etc. I'll write again if I can think of anything else. While we've never met, your two sweeties have touched our hearts, and we're sending our warmest thoughts and best wishes your way.
We're so glad your little doll is home, Leslie and Julianna
Love seeing this update! I KNEW I would see it even though you had to wait so long!
As far as a thickening agent (and please understand that I'm only basing this on what I used to hear 10 years ago) a lot of people will take any fat free liquids or puree'd fat free foods and just mix them with baby rice cereal to thicken. On another note, I've always made all my babes food an have lots of great recipes that are either fat free or still doable without the fat. I'd be happy to pass them on! As an example, I love to take plain old good dried fruit and mix with a little water to use a jelly - or even better; just spoon feed her! I've got a prune butter recipe - oh and you can make hummus even with water (vs. oil). You just email me if I can help!!!!
Jordon M.
Like everyone else, I suggest smoothies. Don't add liquid if it makes it too thin- just yogurt and perhaps oatmeal and fruits and veggies.
Fruit juices are very high in calories. You could boil down a bottle of juice (simmer for prob an hour) to make a thick syrup. Then add that to yogurt, oatmeal, and such. Dried fruit is also high cal. What about soaking some dried fruit in the fruit juice syrup to make the fruit soft again and super crazy high in calories?
Beans are also low fat and high cal. How about some hummus? Or other pureed beans?
Also, starchy veggies are fat free but high cal like potatoes, carrots, corn and peas. If she can't eat them whole, perhaps add them with yogurt to a smoothie?
Good luck! I love the updates and the photos are adorable.
KK
Also, what about smoothie king? Do you happen to live close to one? These are non-milk smoothies that are high in calories and most are 1 gm of fat or less with the consistency you need.
Also, add honey to things. High calorie no fat.
Oooooh Mary! This is the sweetest thing to wake up to. Ivy looks great. I know you're under a lot of pressure but you're doing great. Thank you for the update. That Lexi is such a cutie and such a good big sis.
xoxo
Zara got's polycose in everything to add more calories!!
So happy to see you home!!!
My suggestion is Oatmeal! Not only is it thick, but, it builds muscle and is very good for the heart, and, easy to sweeten up with, perhaps some dried fruits, or, honey or molasses, which would increase the calories, as well. Hope this helps. She is a doll, no matter her expression. And, those two together are just adorable. :)
You're a trooper Mary! The pictures are so awesome. What a precious big sister Lexi is turning into. Still praying for you guys and little Ivy Joy.
Love the pictures! Ivy looks amazing and what a beautiful sight it is to see both sisters together, at home!
Trying to think of some food ideas....mashed sweet potatoes with brown sugar, oatmeal and brown sugar, maybe blended. Do you have a high powered blender? We have a vita mix, it's great for turning anything into a smoothie. Fruit, fruit juice, low fat tofu, honey, yogurt, peas, carrots, potatoes, you can control the thickness by how much liquid you add. Ella's Organic baby food, they have some great combos, comes in a pouch. My 2 yr old has/had some oral aversion issues and this really helped get her some good nutrition.
Thinking of you guys...
I would also suggest making a smoothie and perhaps freezing the smoothie mixture into popsicle molds. My MIL does that and they are delish! What little kid doesn't like popsicles?
Is it possible for you to add a "flavor" to Ivy's thickened medicine, such as a few drops of PomWonderful juice (fat free!) to take away some of that yucky favor? Wish I had other suggestions, but I usually opt for pills which can be crushed and hid in my little one's yogurt or icecream.
Please be careful of freezing anything and giving it to Ivy...when it melts it will become a thin liquid in her mouth and she could aspirate. I agree with all the other comments about thickening Ivy's foods. Adding rice cereal as a thickner should work and there is very little fat. I would also see a dietitian; she/he can make suggestions about adding things to Ivy's diet. You can ask her if you can get some MCT oil (the fat she probably CAN tolerate; its a broken down fat) and you can add it to her foods as well. Doesn't taste that great...but it does add energy....
I think we need to re-name you, Florence Nightingale!!!
You are doing a FANTASTIC job with your little patient!!! I am offering my services for a spreadsheet!!! I think you need a color coded one! I don't know how you are doing it all. But, one thing I know about you is that you are, and you are doing it with a joyful heart!!!!! And, giving thanks as you do!!!! I love the pics of Lexi and Ivy at the bottom. They look so much alike!! Just beautiful! It sounds like things are going great!!!!! Just like before, you are covered in prayer, and God has your back!!! Praise the Lord for that!!!!
Love you!
Diana
P.S: When is your sister coming back!!! :)
Beautiful photo's of your beautiful girls....together...at HOME!
God is Good!
Have a wonderful weekend:)
God Bless,
Diane
Just a thought. Did you try jello, maybe even some crushed fruit pieces in it. After my open heart surgery things like jello went down better. I had the tube in my throat and was in pain.
Ivy looks fantastic! The two together are absolutely beautiful.
We will pray that Ivy continues to improve.
Blessings from CT
Caroline
Hi there--how about the portable fruit/veggie blends like Plum baby or Happy Bellies (or many others)? They are a decent thickness and come in many different varieties. Would they work for her?? They sell them in the baby aisle of Target, Publix (in FL), Toys R Us has the Plum baby ones. They are convenient and very yummy! LOVE seeing how well she's doing at home, Mama!!!
Love,
Lisa Murphy
We use a powder that adds 40 calories per teaspoon and we give our son liberte yogurt in the natural food refrigerated section, but I think it has fats but for 6 ounces there are 290 calories. She does look wonderful!
Lisa
What about greek yogurt. Much higher protein count.
So happy to see Ivy home with her beautiful sister Lexi. Goodness, those two together can knock your socks off with their beauty. So happy to see Ivy well and Mary, not to worry....this calorie thing will work out. We will be seeing plump little Ivy before we know it. God bless you all.
Mary,
It is SO good to see Miss Ivy Joy at home with her family! I know there is noone more thrilled that you :).
What everyone else has posted looks much more helpful than what I am about too, but I have found myself looking at labels ALL day today to try and find something to help you!! Olivia also had to have everything thickened so I understand the struggle.
Gerber Graduates - for toddlers- the chicken and carrott ravioli is a soft solid and is 70 calories with 1g/fat. I know it's not much, but maybe a different flavor for her. Also, archer farms (from target) strawberry real fruit strips (tiny fruit roll up type things - but just strips) are 45 calories but 0 fat. Olivia can eat 2 of them back to back she likes them so much and they are small. Again - I know these both have less calories than the gogurts, but was just trying to think of some things that might give you some added calories with a different taste.
Hope all the comments have helped! Wishing the best to your precious family! :)
Julie in PA (but from down south :))
So wonderful to see Ivy Joy at home! A lot of moms I know of kids who need extra calories swear by carnation instant breakfast powder. It's only .5g of fat per packet, with 130 calories and 5 grams of protein. It's made to be mixed with milk, but I bet you could mix it with yogurt, or with milk and rice-cereal or thick=it or whatever and it's CHOCOLATE!
Hello from Singapore..
i'm not sure this helps but perhaps you can consider adding her medication to her feedings...
that way, u're feeding her both food & medication at the same time...
anyway... i am so happy to read the updates... Ivy is doing fantastic, really.. the word to use is AWESOME!!!
Yvonne
Part 1:
It's great to see Ivy home! I can imagine the difficulty you are having and it sounds like you struck gold with your pediatrician.
First, the calorie goal the doctors set for Ivy may be unrealistic. I've seen this many times before. They tell you that in order to simply grow, a child needs this many calories. However, that usually applies to a healthy child who is running around a lot, who has been healthy all their lives and has organs that are fully fuctioning.
Each person has a different metabolism. You will have seen skinny people who eat a ton and never gain and chubby people who eat a little and always gain.
The only way to tell when Ivy is getting enough calories, is if she is gaining weight. I am also considering the fact that she cannot eat fats, which does change things a bit.
Also to consider is the size of her stomach. It can, obviously, only hold so much!
Here are my suggestions:
Definitely look into the calorie powder and add it to everything!
If your high-cal formula is powder, put it in the yogurt and use it everywhere else you can. If you make Ivy mashed potatoes, use the milk to cook the potatoes and to get the the right consistancy.
Soak Cheerios in the high-cal formula and when they are soft, mash them with a fork or puree them, and add them to the yogurt.
Use sugars, fruits, honey, etc... carefully since you don't want to make Ivy hyperglycemic, but do use them. Tropical fuits, like mango and papaya are great. Avoice coconut because of the fat.
Research avocados. What kind of fats does Ivy have to avoid?
Avoid foods that contain a lot of water because they are lower in calories, like squash.
If you don't have an excellent blender, get one. I highly recommend the Vitamix because you have ultimate control over consistancy and can make it super smooth. The company will sell refurbished ones inexpensively to families with a medical need. I know of an EB family who was very grateful for this.
Another helpful appliance is an electronic pressure cooker. I'd choose mine above a microwave! That's how much I use it and love it and I love how it preserves the nutrients in food.
Part 2:
There is a book called Deceptively Delicious that promotes making purees to high kid's veggies and booth nutritional values of regular foods. I don't agree with hiding veggies, but I do love boosting nutritional content of foods. You can use the techniques in this book to easily boost calories as well.
Look at the complex carbohydrates and higher level simple carbohydrates. The yam or sweet potato is your best friend. It can be made to taste very delicious to a baby if you mix it with fat free cottage cheese and a pinch of cinnamon. Ivy might like it plain, too, but do mix it with the high-calorie formula to get the consistancy just right.
If you have a Vitamix or other super blender, get dried fruits and puree them with the sweet potato and with regular white potatoes. Be sure to get it smooth. The dried fruit has very dense calories per amount. It just takes a little.
Oatmeal, Malt-o-meal, Cream of Wheat will balance the dairy and give Ivy a more satisfying meal. Cook it with the high-cal formula and sweeten with the pureed dry fruits and honey. You can also mix your yogurt in for a nice flavor and creamy texture. If the cereal is not smooth enough, put it into the blender. You can make a large batch and put it in the fridge and dish it out as needed. Again, use the high-cal formula to thin it since it often glops up in the fridge even more.
Next, the legume family! Lowfat chicken broth, lentils, carrots, cumin, and a pinch of curry and ceyenne or chili powder makes a great meal over brown rice. It also purees up super well in the Vitamix. Remember, you want Ivy to enjoy eating, too.
Pasta is another way to get those calories in. Use a spinach tortalini (check fat contents!) or whole wheat pasta, then use low or non-fat cottage cheese, or any other low or non fat cheese or yogurt and the high cal formula to make a sauce. To make this taste yummy, try a little garlic powder, black pepper and a pinch of nutmeg. This makes it taste like alfredo. If she can eat the pasts as is, fine, if you puree it, add some veggie puree, too, like raw spinach or a little broccoli.
Soups are the last thing I'll go into. Make any kind of soup, boil off the fat, strain the chunks out of the broth, then puree what's left. You can make a hearty chicken and veggie soup and put it into the fridge afterward and peel off almost all the fat, which will harden on the top. If it's too thin when pureed, add a little cooked brown rice.
Watch for constipation and use pureed prunes, if needed.
All the foods I mentioned can be pureed to be comfortable when going down a sore throat.
I wish I was nearby. I'd become Ivy's personal chef for you!
Karo syrup has 120 calories per 2 tablespoons so if you can mix it into some of the stuff she is eating, that will add a lot of calories (and no fat!!). I know it is a little thinner than honey...if she can eat some type of sweet bread (or biscuits), she could have the syrup over the bread to soak it up which would make it thicker...Sorry I just am not a lot of help.
It is such a JOY to see your girls HOME together....to see Ivy Joy sitting in the grass instead of a hospital bed. What a prayer come true!!!
So grateful....
Robin
Bless you all~ I am SO thankful you are home where you can be comfortable!!! Precious photos of your sweet babies!!! Blessings and love! XOXO
Bryce cannot digest milk based proteins and is also allergic to eggs, so meeting his caloric goals has been very difficult. Our feeding team gave us a canister of Polycose (glucose polymer module). It can be mixed into just about anything and has a subtle sweetness to it. One level tablespoonful has 23 calories, so you can use it to boost her meals and snacks throughout the day.
So thought of this tonight as I was at work talking to the family I work for who follows your blog, when I go camping I will eat this meal and kids seem to really like it. Take 1 cup rice and add brown sugar and raisins and a little bit of cinnamon. It is really tasty. Good luck, you are doing an amazing job!
oh, goodness. beautiful--both of them, together!
Krista
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