Bonjour Montreal!

Inspired by my sister-in-law, Jennifer, who goes away two weeks a year without my brother or their four children, I decided to celebrate Zoe weaning herself by going to Montreal with my friend Amanda. Anyone who knows what a challenge it was (for me and Zoe) to breastfeed will agree that I definitely deserved this trip. (If there is a 1P mom reading this and you want tips on breastfeeding your child, please feel free to ask. I did not find any helpful literature and I had only met one other mom who was able to breastfeed her 1P36 child and she reported that her child nursed much like her other children and therefore did not have the issues that Zoe did with feeding).

This was the first time I was ever away from Zoe for more than ten hours. I wasn't sure if I was going to break down crying, but I have to say I ended up having an awesome time. It was so nice to walk around the city with just a tiny purse and be able to do whatever I wanted. Amanda (being the great friend that she is) was up for anything so we just did a lot of walking around since it was such a gorgeous weekend. I did think of Zoe a lot during the weekend (especially when we got completely lost in the woods and I wondered if we would ever find our way out so I could see my baby again!), but I was able to enjoy my time away. Although I felt just as tired physically when I returned, I felt renewed mentally. I think in a lot of ways, Gavin and I are both so fatigued emotionally/mentally more than physically. (Although we are pretty tired physically too these days!) Our trip to Boston for the 1P36 conference was wonderful, but there is an emotional piece to seeing the other kids too. It is wonderful to see how well some of the kids are doing but it can be tough to be reminded about how far we have to go and what Zoe's future may be like. It was great to see everyone though, and as soon as we finish going through the pictures, we are going to post of few on the blog. 1P36 families are sharing pictures on the listserve as well.

Our PA trip/ Joe's wedding and Zoe's weight gain

Zoe with Uncle Joe and Aunt Kristen

Visiting with Friends and Family
We are still recovering from our big PA trip. We had a great time visiting with friends and family. We have now learned that travelling with Zoe takes a lot longer than it would with a typical child and we have to pace ourselves. We were not able to see everyone we wanted, but decided to shorten the list of people and really spend time with the people on the list. We had a great time showing Zoe off to old co-workers at the Children's Hospital of Philadelphia, visiting with Aine and Ailish (twins that I used to take care of), and hanging out with various friends and relatives. Zoe, as always, just went with the flow and did such a great job staying calm with so many new people to meet. She did a lot of arching, but we figure that she was overstimulated most of the time. Zoe also did not eat very well but drank a lot on the trip. Since it was so hot in Philly (we forgot how hot it can get!) we figured all the drinking was a good thing. And apparently she was getting enough calories.
The Big Weigh In
We went to the doctor yesterday to check Zoe's weight (previously, she had not gained more than 3 ounces since last November) and had a great surprise- Zoe gained over a pound this last month! I was so excited when I saw those numbers that tears immediately came to my eyes. Gavin and I have been so stressed out with Zoe weaning herself and not eating very well. We kept worrying that she would lose weight. But Zoe has shown us, yet again, that she knows exactly what she needs. Zoe's head has also grown a little. We could see how relieved the doctor was to see Zoe finally putting on some weight and head cm. Dr Taylor is an amazing doctor and really gives Zoe a chance to do things on her own first. Even though we have moved and her office is an hour away, it is worth making the trip every month because we know that the doctor is making choices with all of Zoe's development and social situation in mind. Now that Zoe has totally weaned herself and is taking pediasure and cow's milk, we have decided to stop pumping. I say we even though it is me pumping because we have made this decision as a family. At this point, I am pumping for about an hour total a day and getting less than 5 ounces total. It just is not worth the effort and time for such a small amount of milk. The doctor agreed with this plan. I am a little nervous that taking away the breastmilk will affect Zoe's growth and immunities, but we feel that it is time. Zoe has shown us that she does not want to breastfeed anymore so we are following her lead.
Zoe Signed Mommy
Zoe is really picking up sign language now. Zoe is consistently using milk and eat when she is hungry or wants a drink. She is inconsistent, but trying with all done. Also, for the first time ever- Zoe imitated mommy on Sunday night. We were very excited to see this. I kept thinking "My little girl has finally said mommy!"
Getting back into a routine
When I was doing Zoe's PT yesterday, I noticed that the arching is less since we got home. Also, Zoe's sitting skills are really progressing and she will sit for about 20 seconds before falling over. She is still very tired from the trip and is sleeping a lot. Since Zoe has vision, speech, and OT/PT coming this afternoon, I am letting her sleep the day away until they get here.
More people coming to visit this week
Gavin's mom flies in tomorrow, my brother Tom, his wife, and their four kids drive up tomorrow, and Gavin's aunt Patsy is visiting from Bangkok on Saturday. So we are going to have a full house and we know Zoe is going to be over stimulated again. We will get back into a routine once everything settles down. For now, its more important that Zoe get her sleep so she can keep on eating and packing on those pounds!

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.