Happy Father's Day

For Father's Day, Zoe and I made Gavin an angel food cake with whipped cream and strawberries. We took the opportunity to practice an eating skill with Zoe- sucking food off a finger. This may sound like an odd skill to practice, but Zoe does not have the instinct to just suck food off her fingers or to lick anything. At this point, Zoe will stick out her tongue to taste her toys, our shirts, the spoon she is eating off of, etc but she does not lick or suck automatically. Now that Zoe has four teeth, practicing this skills can be a bit dangerous for the adult offering his or her finger! Zoe did not enjoy sucking the whipped cream but she did enjoy eating it off the spoon. So this picture is Zoe after she enjoyed some of daddy's dessert. She did not want the cake or strawberries (usually she loves strawberries but she was having a very picky eating day). We make the whipped cream ourselves so it has very little sugar and lots of fat so we figured, go for it Zoe!
Zoe has come a very long way with eating. She is now able to eat mashed food very quickly. When Zoe is not sick and is in a good mood, we can also give her small bites of table food. Since chewing is still so much work for Zoe, we have to balance getting the calories into her and having her practice eating. So, the meal usually consists of lots of mashed and easy to eat food shovelled quickly into Zoe's mouth (if you don't go fast enough, Zoe will slap her hand down on the tray and grunt in protest meaning "Hurry up! I'm hungry!") After Zoe starts to slow down on the mashed food, we give her bites of whatever we are eating. Zoe loves it when daddy gives her his food off of his giant fork (she won't take it off her own spoon and she usually wants daddy's food, not mommy's- we love to see Zoe showing preferences!) Zoe is able to chew some foods, but it takes her a very long time and she tends to store them in her mouth. Sometimes, it will be fifteen mins after a meal has ended and Zoe is still chewing her food.
Another eating skill we are working on is getting Zoe to take a bite out of a bigger piece of food. We have found a good food for this to practice on. Zoe loves eggs. We now hard boil a few eggs to keep in the fridge. For breakfast, I scoop out the yolk and put it in Zoe's cereal bowl and then I take the egg white and cut it in half. After Zoe has chowed down on her cereal (high fat yogurt, fruit, and oatmeal) and egg yolk, I let her practice biting the egg white. The egg is nice and soft and perfect for biting. Zoe also loves to practice biting blackberries (this gets a bit messier). Zoe enjoys biting things as seen by her laughing hysterically when biting avocado (apparently avocado is really funny). At this point, Zoe is able to coordinate her tongue and lips so if a piece of food is put on her lips, she can move that food into her mouth instead of it falling off her lips.
The key with Zoe is giving her lots of time for her meals. At this point, breakfast still takes 90 minutes between the nursing and solid food. All other meals take about half that time. One of the reasons Zoe will stay in the infant/young toddler room at daycare is so the teachers can still dedicate at least 40 mins of on-on-one eating time with Zoe for every meal.
As for drinking- Zoe has decided quite suddenly that she is done with nursing. Zoe had been on nursing strikes before (when cutting teeth or when she was sick) but it has never lasted this long. After ten days of not nursing at all, Zoe suddenly decided she does like the morning nurse. This is a relief since Zoe has always been borderline dehydrated. So, Zoe continues to get that morning nurse with lots of milk. The rest of the day, Zoe drinks out of her sippy cup with the valve removed. This way, the milk spills into her mouth and she does not have to suck it out. We have tried the cup with the valve in, but Zoe just cant suck hard enough. We have also tried straws, but again, Zoe does not really suck (with nursing, I was doing a lot of compressions to put the milk into Zoe's mouth because she has never had a strong suck). Zoe can drink a couple ounces from the cup at this point, so we just have to be sure to offer her drinks every couple hours to keep her hydrated. When we talked to her dietitian from the cardiology clinic, they said that breastmilk is still the best nutrition for her. So, I am now pumping several times a day to get milk for her cup. When I am not able to get enough milk, the dietitian recommended that we start Zoe on pediasure. So, last night Zoe had her first taste of pediasure and did not really go for it. Zoe has never been a fan of sweet things, so pediasure might be hard for her. But this morning she did drink an ounce of it- hey, every ounce counts!
Wow, this is turning into a long post. I just wanted to add one more thing about eating. 1P36 kids are typically very small when they are little and some have obesity problems later on. For that reason, we are taking the time now to feed Zoe lots of vegetables, fruits, and good sources of protein. We are adding calories to her food in natural ways (avocado is very fatty, olive oil, and now pediasure). It would be easy to fall into feeding Zoe higher fat foods (junk foods, take out food, etc) that have more calories but these are empty calories. We want Zoe to get into good eating patterns and then we can take away the fat later without her noticing (switch from high-fat yogurt to low-fat, stop adding oil, etc). We are hoping that this works. It is difficult to find any research or literature on what we are doing with Zoe since 1P36 is so new. I have yet to find anyone in literature or on the listserve who successfully breastfed a child with 1P36 past the first few months. Some people were encouraged to stop breastfeeding and start supplementing. In Zoe's medical chart it says that we started breastfeeding AMA (Against Medical Advice) but all of her doctors since then have acknowledged that Zoe would not be doing so well with oral feedings if we had not insisted on nursing her. So, we can only do what we think is best for Zoe and hope that it turns out well in the end. Like any parent.
If there are any 1P36 parents reading this who want tips on preparing Zoe's food, just let us know. We make most of Zoe's food and blend it ourselves. Jarred food has a lot of water in the food and we add milk instead of water when preparing her food. Also, we have noticed that the fruit (Zoe eats a lot of fruit since she tends to get constipated due to the low muscle tone in her trunk) has a lot less fibre in the jar since they add a lot of water. It is very time consuming to make Zoe's food but we have found a way to spend an hour here and an hour there jarring our own food and then storing it in the freezer. This way, during the week it is easy to pull out food for Zoe. Also, we have found that Zoe sometimes refuses the first one, or two, or three bowls of food we prepare for her so we have to have lots of choices on hand. Again, it would be easy to give Zoe pudding or something like that after she refuses the healthy dinner. This would give her calories, but not a whole lot of nutrition. So, it is important to keep offering her healthy alternatives for dinner.